Scott Benner 7/19/23 Scott Benner 7/19/23

#957 Pickle Juice

Bill and Ann are the parents of a child living with 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 episode 957 of the Juicebox Podcast.

On this episode I speak with Bill the father of a child with type one diabetes. And then partway through the episode Bill hands the microphone to and his wife. The entire thing happens while Anna's cleaning the refrigerator. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Start your day with ag one drink ag one.com forward slash juice box. If you're looking for a Dexcom on the PA G voc hypo pen, a contour meter us med touch by type one Athletic Greens better help or cozy Earth go into your podcast player into the shownotes. And there are links there for all of the sponsors. You can also find those links at juicebox podcast.com. When you click on one of my links, you're supporting the production of the podcast and keeping it free and plentiful. Don't forget to check out the diabetes Pro Tip series and all the series that are available in the podcast there at juicebox podcast.com. We're in the feature tab of the private Facebook group. This episode of The Juicebox Podcast is sponsored by cozy Earth. Get yourself the same towels I use the sweatpants I wear and the sheets that I sleep on and so much more at cozy earth.com. When you use the offer code juice box at checkout, you will save a full 40% off of your entire order. 40% off your entire order at cosy earth.com Hello. Hello. Hello. Yes. Bill. How are you? Perfect.

Bill 2:06
Good. How are you?

Scott Benner 2:09
Can I be honest with you? Sure. I've been sick since Saturday for sure. The week or so prior to that. My son and I would look at each other once in a while ago. Do you feel okay? He'd be like, Oh, I thought I was gonna get sick today. But then I didn't. Like my wife came home from Paris with COVID. Okay, he had to go there for work. She came home, she was fine a day or two or three later. She's like, I don't feel good. She's like, let me you know, I'm gonna get away from everybody. And let's get me a COVID has to be, you know, be sure none of us have ever had COVID before. And so sure enough, she has it. And we my satellite just without, excuse me, I'm sorry. There's so many noises over here. That won't be happening in a minute. My son, my son and I without any concern for her at all. Just jam her into a bedroom and we're like do not do not come out of there. Like No way. Yeah. If you're really lucky, we'll bring food, you know, but if you come out, you know, that's it, we'll burn the house. So she's in there for five solid days. We're doing fine. You know, it's sucks and all. But um, but nobody's sick. And she tests negative. And she says, Well, I'm negative. It's you know, the CDC says, this is long enough. I'll stay in here another day. And I was like, Okay, so the next day goes by she goes by I feel terrific. And I was like, great. Okay, so she kind of re acclimates into the house. Yeah, 36 hours later, she goes, I don't feel good. And we are like, what the? Are you serious? So she's just, we chambre back in the in the room, but I'm guessing the damage was done. Because for the next three or four days, like everyone's will on hold, be like, I thought I was gonna get sick today. But then I didn't. And I said, Oh, I've had that feeling a couple of times. So Saturday comes and he just, he's dizzy. And I'm like you already because I'm not okay. And he goes and lays down. I don't see him again. And, and I don't feel good that day. And then the next day, I'm not okay. And he's getting worse. And then Monday and Tuesday and we test ourselves and we don't have COVID and our symptoms super look like this RSV that's going around, like everywhere. So we think that's probably it, you know, and nothing just sick. In the evening. It's the weirdest thing but like I get up in the morning, I don't feel good. In the middle of the day. I'm okay. I get a little tired at night, can't sleep. And then around 11 or 12 o'clock my body gets super hot and I stay up all night and I can't sleep. It's happened three nights in a row. Well, I fall asleep I guess four or five o'clock in the morning. So anyway, last night around, I don't know what time it was one or two in the morning my wife has just taken other COVID tests like I stuck it my nose stuck it in the thing and the line popped up immediately.

Bill 5:13
Immediately Yeah, that's that's about that sounds about right we all had it back in January. I will accept my wife Believe it or not she I don't know how she didn't get it. But we all had it. And immediately if there was a waiting around it, we all popped two seconds. Two seconds at that line. So and I'm in sales so anytime I you can hear it to me I actually have a head cold. I woke up this morning with a head cold because it seems like with three kids there's somebody has been sick in this house with something for the last two months. It's just somebody's stuffy somebody's coughing. Something's going on. Yeah. And I, I got it again. And but so I have to test all the time for COVID. I was negative. But yeah, when we hadn't exactly right. But it sounds like you're, well, you're fortunate enough to go to what two and a half, almost three years? Yeah. Well, I

Scott Benner 6:00
mean, I listen to I didn't like being in my house. But I was very healthy. I was very healthy touring. But now geez, I mean, look. I recorded an episode. You'll be people will hear this. We are recording Bilbo I'm sorry. Well, people will hear this just like forever after this happens. But I did an episode for Jeeva hypo pet and me and Jenny did kind of like an instructional episode about how to use the pen and reasons why you'd want to tell people about your diabetes and how to help you with glucagon and you know, kind of stuff that probably falls through the cracks for people like that. But it was a but it was a business arrangement. And so you know, there are four people on this recording from companies and everything. I just get up. Like, I get on the thing. And I say to people, like I'm so sorry, I have a blanket here. You might see me wrap the blanket around myself during this you will not I swear you won't hear it on the recording. I did a really good job. But the exact opposite happened. We started talking and I just broke out. I looked like I was kicking heroin. Like I was just sweating like a waterfall. And yeah, and people I know are looking at me going like, this ain't gonna work out. But I did it. But I was pretty good. I was pretty impressed with myself. But it was.

Bill 7:20
Yeah, you pulled through it. I was I had it the worst. That's how I was my first night. I mean, I was just like you said shivering wrapped up. And I'm a I'm a big guy. I'm a former college football player. So you know, I I feel like I can take pain. Even my wife will tell me that I'm the typical, stereotypical dad who is tough 99% of the time, but the minute you're sick, you're kind of a wuss, but it kicked my butt. I was sweating and shivering and chills and couldn't get warm. And it was it was something else for a few days.

Scott Benner 7:49
Well, it's interesting how owning like your own business, like if this podcast was, if it was somebody else's, I would have called them three days ago and be like, I'm sick. Yeah, good. Good luck. I don't know how you're gonna do it. I'm not coming. But when it's me, like I got up this morning. And I was like, I'm like, alright, you, you ask, like, get moving. Like you get I'm like getting a shower, wake yourself up, like, go, go, go. You're broke out in a sweat. You'll deal with it later. Like, I It's funny. You know what, Bill, I'm sorry. After this, we'll introduce you and get going. But my dad, like my dad bailed on us when I was pretty young. Like, I was like, 13. And I don't I never thought I took a ton of like, I don't know, examples from him. Other than, you know, don't treat people like this. But yeah, there's this one thing when I was a little kid, I remember he if he was sick, he went to work. Just like he just did it. And I and I remember being in this kitchen of our house one time and I and I was like watching him get I must have I must have been like this my whole life like this. I have a real concern for other people. And like, I'm watching him get ready to leave for work. And I said that I think you should stay home. You're really sick. And he goes, No, no, I want to save my sick days for something good. And I was like, what now? And he goes, I'm gonna be sick today no matter what Scott might as well go do it somewhere where they're paying me. All right. Oh, man, go get it. You know, like it'd be I now I think back. He was probably like, he's probably like, 3840 years old, you know? And he was yeah, he's like, listen, I only get a few of these days. I'm not wasting them on laying around the house.

Bill 9:32
Okay, very true. Yes. It's very funny.

Scott Benner 9:35
So, anyway, I'm sorry. We had this whole conversation before we started. I just want to tell you Oh, you're wearing I'm wired headphones. Is that right?

Bill 9:44
Correct. Yeah, I'm actually attached to my iPhone with the wireless. That's cool. Can

Scott Benner 9:47
you just do me a favor like when you're moving the cable the the wire side with the mic is robbing something. So if you keep keep that from happening, that'd be terrific. Why don't you just introduce yourself? Are you talking?

Bill 10:01
Okay? Hi, my name is Bill stalker from eastern Pennsylvania. I have a daughter Sylvia, who is type one diabetic. I have two other children as well. Sophia Weston and married to my wife, Andrea.

Scott Benner 10:16
Alright, so you have Sophia type one, is

Bill 10:18
that right? No, so Silvia is type one.

Scott Benner 10:22
This might go like this a little bit today.

Bill 10:25
It's quite alright. their name, their name. Their names are so close. It's Sylvia and Sophia. So they're, you know, it's very, very easy to get them confused, but no, Silvia is type one and she'll be 13 next week, actually.

Scott Benner 10:35
Oh, happy birthday, Sophia. younger, older.

Bill 10:38
Sophia is younger. She's 15 months younger. Okay, because she's 11 right now. All right.

Scott Benner 10:42
And your wife, your wife,

Bill 10:47
okay? Yes. And then Weston, my son Weston, who's eight years old.

Scott Benner 10:51
You have a boy though. Okay. All right. So three kids, a wife, one type one diabetes. Okay, how long ago was she diagnosed?

Bill 11:01
She was diagnosed actually, we're coming up on her diversity in three days. So Rocktober 30 at the 2015

Scott Benner 11:12
Well, 60s 70s Okay. Wow. A good long time right before Halloween.

Bill 11:17
Yeah, yeah, it's interesting. It's the poor kid was in the hospital over you know, you're hospitalized for three days while they get everything situated and they had trick or treat on the on the pediatric floor. And this poor kid has been diagnosed with diabetes while everyone's trick or treating. And, you know, God bless their hearts. The Lehigh Valley Hospital didn't know much. You know, they didn't, didn't realize what was going on. But they had a funny event plan for the kids. And my kid was newly diagnosed with diabetes,

Scott Benner 11:44
lots of low snacks. That's all. Yeah, it just that what they should have thought it was like, no, not the chocolate. I'll take anything with sugar please. Just a Skittle in there something. Exactly. Wow, that's and that's a that's a long time ago. already? Yeah. Does it feel like it's been a long time.

Bill 12:05
It doesn't mean it just becomes you know, your, your instincts kind of kick in, it just becomes a part of life. It's, you know, it's always been a part of her at first. You know, it was like, we kind of had four kids, you we had the three kids and then diabetes, you know, where we had to make sure we you got to make sure everyone's packed and shoes are tied. Everyone's going to the bathroom. But then you add your backpack? Do you have loads do you have at the time, glucagon do you have this? But now it's everything's just second nature. And we're blessed. But Silvia, she kind of took over with her, you know, helping to run it at an early age by, you know, six or seven. She was doing things on her own. That was just we were just blessed to have and she had such a positive attitude about it. Wow. So it's really it has not, you know, we look back and say, Wow, I can't believe it's been seven years because it just it hasn't. It's kind of flown by just like any other, you know, any other day or year. What the wait

Scott Benner 12:57
time? Yeah, you're not the primary caregiver, the kids or you are.

Bill 13:03
I'm not No, I work and my wife stays home and she's a primary caregiver for the

Scott Benner 13:06
kids. So this is for me than your perspectives. Much different than what I get normally. So I really want to hear if you don't mind, I'm going to ask you first to tell me you don't even cuz your perspective, I usually hear Bill I usually hear I called my husband at work. And I told him, We got to get the kids to the hospital. Like that's how the story goes. 80% Yeah. So how about for you? Like what was the lead up? Like, and how did you realize that? Sylvia had type one, the whole thing.

Bill 13:34
So it's, you know, it's kind of we've even before and after, while I work I've always been fortunate enough to at an early age and the kids came to be home a lot with with work. I've always coached the kids and so we've we've been a real close team, you know, I've had like growing up, my dad worked 1216 hours a day. So while he coached us, it when my mom really kind of helped take care of us. But we've been involved. I've been involved with it a lot. But Andrea, my wife does so much of it, but she leading up to it. We had just moved. So Sylvia, we moved to school districts, we didn't move for only a couple of miles, but we had changed school districts, so it was changing schools. And we just started started to see and notice some behavioral changes. Excuse me, I'm going to walk around a house here to get a drink of water here. So we started notices of things. So it was always the nicest kid she was always very patient. You know, everybody always said and this is mine, kind of how I recognized it. And some of the things my wife noticed differently. She had always been a great color, right? So everyone says about her kids, oh, she's such an artist, but she would always call color in the lines and be very patient. We noticed that started to change sometimes, you know, she would kind of just get frustrated easily or get frustrated with your sister. You know, think things start like if she was coloring she would walk away from it. Because it wasn't as neat as it was she was my wife started noticing on By using the bathroom a lot more. She one night we had caught her in the bathroom, drinking out of the faucet, just shoveling water into her mouth. She was so thirsty. The tip, the typical signs, and my wife had kind of picked up on it earlier than me, you know, those are some of the things I noticed. And of course, a dad coming home just saying she's fine. She's just, you know, she's changing mentally. She's just having an issue changing schools. She's having a hard time, you know, changing. She's moved from her old house for the first time she's ever known to a new, bigger home. When my wife really started looking into it and had an idea. When it happened, she let's just say it was a shock. But Andrea wasn't wasn't fully surprised. Yeah,

Scott Benner 15:40
it's interesting to just see how I always again, I always hear that story from the other side, like, you know, I was seeing it happen, but my, but the person from outside of the house who's coming, you know, who's not there during the day to see all the little quirky things happen. That person either does what you did, or they come in and they have like the flip perspective where they're like, I don't know, we should check because I don't know what you're talking about. It's it's the coloring thing. Yeah,

Bill 16:07
yeah, it's something it's something that I've noticed that that I, I can see it in my there's a specific time where we she was sitting at, we have a nice bench table in the dining room, and she was sitting there. And she just got up and walked away from it. And she kind of snapped at her sister a little bit. And I just looked at the drawing and it just the coloring wasn't what it used to be. And she because she she was having a having a hard time. You know, obviously focusing she was having headaches and her blood sugar is being so high and she just having a hard time focusing and looking at these drawings. And it just changed. It went from inside of the lines beautiful. We have actually some of her art when she was a kid hanging up in our house to just coloring outside the lines and just filling it in or this is going to be green. So I'm just going to scribble it in green, as she would just get up and walk away from it. She didn't have the concentration. She did not she could not sit down and focus on it. She couldn't

Scott Benner 16:54
so then how does that translate to medical care? How do you decide we should take her to a doctor

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Bill 19:22
Yeah, so we so we have it's funny again, this is all around Halloween. So she was scheduled to go to a Halloween parade at her school that day. And we were it was any typical Friday, my wife was gonna take the kids in the school, go to the parade. I was. I was home a little bit early. So I was waiting to for my dad get off work. My dad and I my dad's younger he hadn't even he was 20 So we're, we're very close. So he him and I were going to go out and watch some sports and she was gonna take the kids to the physical so she decided to have a doctor's appointment for Sylvia's Hey, I'm just gonna take her to the doctor's give her a physical kind of see what's going on. So okay, so let's get that she she had her costume Halloween costume in the car ready to go, we're gonna go from the doctor's back to the house back to school and figure it out and then it just kind of all fell apart from there. Yeah. That Andrea kind of knew. That's why she took her in for the physical and the doctor. The doctor kind of knew right away as well that something's something's not right. It's probably it could be the timing of juvenile diabetes. Yeah.

Scott Benner 20:22
And he told he told Andrea that right in the doctor's office.

Bill 20:26
Yeah, if you don't mind Andrews Andrews here, she's just a little shy on on talking on so and the doctor told you at the office, correct? Yeah. Yeah, we they kind of knew what they knew over the phone even over the phone. They know. Oh, yeah. Yeah. So so the symptoms that that end was giving to the doctor, they kind of knew I gotcha. Okay. So what they wanted her to come in and do the finger stick and just kind of confirmed what their what their thoughts were and then I got the call from from and that they were heading out to the Valley Hospital.

Scott Benner 20:54
What was the Halloween costume

Bill 20:57
it was a we have also pictured it was a bad girl costume. It was a pink back girl costume. And we have a picture I think the day before even the date of the day before she had it on in front of our in front of our garage. And she has she's standing in this powerful you know, super woman type stance with her arm pointed up in the air like showing off and we we've used that on certain things we've done for diet. You know if she's ever done a poster for diabetes or pictures for it, that's kind of been our, our poster of you know, it's a super, you know, here she is dressed as a super woman. And the day after or the next day she's you know, yeah, giving, giving her she's given her kryptonite right the next day.

Scott Benner 21:37
Something else? Oh, wow. Okay, so how long did they keep her at the hospital?

Bill 21:42
She was in hospital? Three, four days. Okay. Yeah, it was it was over a weekend. So the staff was like, right, there weren't specialists there over the weekend. It was, it was it was rough. I mean, we had great support from friends and family that we just didn't, you know, didn't expect. We had cousins show up to bring their kids to visit Silvia, we had a lot of support. So it made it made it easier. Especially my wife, you know, and she's, it's, like I said, I was distracted with with work and the other kids and she was at the hospital whole time with Sylvia. Yeah. But we were we had a great, great group of support. We did,

Scott Benner 22:20
how does that work backwards? Well, while she's at the hospital learning, is she calling you and filling you in? Is she taking notes and saying I'll come home and explain all this? Or did she feel like it was going to be her thing? Primarily, like,

Bill 22:36
No, we did it together. So I would be so we had, again, we're fortunate that we've a lot of family that live in the area. So you know, we'd have my mother in law helped us out a lot. She was here with the kids during the day, my mom would help as well. So we had a lot of help where I would then go out to the girl to the hospital. And I'd spend four or five hours there with with Andrea when they did when they had meetings that they were going to explain things like that, I would make sure I'd get there as well. And I had a job at the time that was really supportive of it. You know, take whatever time you need, learn everything. So we were kind of there side by side learning everything as it went along. Now emergency I would come home at night about nine o'clock at night to the other kids get them ready for bed and and then, you know,

Scott Benner 23:20
you were doing the functional stuff at the house. Yeah,

Bill 23:24
absolutely. And she she would get she would get through the, through the nights with Sylvia and then I'd come back out once the kids got situated. And we would head back out to the hospital with Andrew.

Scott Benner 23:36
Was there any indication? As far as family line goes that you were looking for type one diabetes?

Bill 23:44
Well, my brother's my brother is type one. So my my younger brother is type one diabetic. But other than that, I mean, we weren't really looking for any we've had. There's some type to through sprinkled throughout the family. But there's nobody that we directly know on, you know, that we've dealt with. I mean, we never really recognize it. Even with my my brother. He always lived. He didn't live in the area. So we weren't really

Scott Benner 24:10
sure. How old was he when he was diagnosed?

Bill 24:13
He was 17 or 18. He was a freshman in college. So he was diagnosed later in life, and you're how much older than he? I'm four years. So I'm four years older. He were so adult

Scott Benner 24:25
and he was just getting into college. Okay,

Bill 24:27
correct. Yep. I had just graduated college and he was just starting that we were exactly, exactly a high school career apart, basically.

Scott Benner 24:34
So when when he was diagnosed, like, I mean, is that a thing like your parents call you and you're like, Hey, your brother has diabetes, or how did you intersect with that?

Bill 24:45
I kind of was it was just hey, they, you know, again, my parents were hard, hard workers, right? They didn't they they were factory guys or worked in a hospital as a secretary. So they weren't really on top of it as well because they hadn't had any experience with it. And that was kind of do my own thing. I was living at home, but just graduated from college trying to figure out what was going on. And it was it was kind of like, Hey, your brother has diabetes, visited him in the hospital, he got out and they kind of helped him do it. And I just didn't really have much, much contact with it. I guess it was just kind of, because he was a little bit older. So it wasn't like he needed help. As far as taking care of himself. You know, he was he was old enough to learn it on his own.

Scott Benner 25:25
No, no, I understand completely. I was just Yeah. interested about like, it was a specific time in your life. Like if that would have happened to him? I don't know, six or seven years prior, you would have had a lot of experience with type one. It Oh, absolutely. Yeah. But yes, because of the way it landed. You just didn't really. Yeah, exactly. Right.

Bill 25:43
Exactly. I was exactly. So So you would have thought it was. So when my daughter was diagnosed, it wasn't like I was, I had this bank of information I could fall back on it was it was just as just as fresh as new. If I had never met anybody with it.

Scott Benner 25:58
Now when she is diagnosed, do you call your brother and go? Hey, you know, so he's got that type one as well. I need? Like, I don't know what your relationships like. But I'm just wondering, did you have that avenue?

Bill 26:09
Yeah, yeah. And I think he was living in Florida at the time. So you know, we call it unexplained. And, you know, there was, there was things that we definitely kind of leaned on him for, as far as checking on things, any, any technology we should look out for. But again, it's hard with that distance in between, in and again, not not being a child. So he couldn't directly relate. What it was like for him to be a five year old diagnosed with it or to be a parent with you know,

Scott Benner 26:37
so then what was what was that like for him? Or did they I mean, it's, it's a it's a while ago now, like it was right at the beginning of CGM. So I don't imagine you had one of those. What did they Weaver

Bill 26:50
when she so we were fortunate. We we had we had CGM. And quite quickly, I mean, it was four months. Really? That's great. So yeah, we had the Dexcom rep in our area did a great job. And we and again, the Lehigh Valley network. They did you know, with the social worker, they were on top of everything, they've answered every question. I wish I could remember names to kind of give them give them a shout out. But they they did a great job really, again, so did my wife and she, we she really researched and, you know, we were really advocates for her as getting it, you know, getting everything we could for her as quickly as possible and make it as easy as it would be.

Scott Benner 27:28
That's really cool. So she had to CGM pretty quickly. MDI, yes, for how long?

Bill 27:34
And di meaning I'm

Scott Benner 27:35
sorry, multiple daily injects. She was injecting in? Oh, yeah. At first, how long does she and does she still do that? Maybe?

Bill 27:42
Oh, wait, I think we should have coffee tomorrow. So it was it was a matter of months as well with the pump. So we probably had, we probably have full, we had her full bionic suit, if you will. We had the pump and the CGM and the pump with in three to four months of each other it was it was quite quickly.

Scott Benner 27:58
What What year was that? Again?

Bill 28:00
This was so your it was? It'll be seven years. So 2015 to the end of 2015.

Scott Benner 28:06
That's great. That's really great. Yeah,

Bill 28:08
yeah, it was. I mean, we were very fortunate for that. I mean, those first three months of the sleepless nights, you know, constantly checking her doing the night shift. You know, I'll check her this hour, you check her the next hour. You know, I think our sleep patterns have for mine in particular, I've never really changed. You know, we still you still don't get more than two hours at a clip, you know, because you're still getting up checking your Dexcom and things like that making sure everything's okay throughout the night.

Scott Benner 28:37
Is that a worry for you? Or is that a real? Like need? Oh, she getting a lower high?

Bill 28:42
No, no, it's especially now she's been good. She plays three sports, you know, sometimes two sports in a single season. So there are nights where it's, it's, it's an extra, it's an it's a need. We're sure you know, she's swimming throughout the day, and then has basketball tournament or softball tournament, hard nights, there could be some long nights where it's, you know, four or five, six juice boxes in the night. But it's more I think it's more of a it's more of a more of a conscious thing for me more of a habit. Because when she was I would travel a little bit too when she was first diagnosed some overnights here and there. And, you know, that was I would always just start keeping making sure I was checking it because Andrea was home with them. But I would also make sure even though I was distant, I was still checking it calling texting, making sure everything was you know, it was more habit. So she's she's, she's been pretty good for a while as far as lows throughout the night.

Scott Benner 29:31
Wow. That's great. Yeah, I mean, all that activity during the day. It's tough. You know, it's yeah, I've definitely, I'm picturing ourselves in a in a hotel room after a softball tournament where we're art and just, you know, we didn't have that much stuff with this at the end of the day, and we're down to like a banana and two more juice boxes. And I'm like, I hope this gets us through this night. You know? Yeah,

Bill 29:56
I know. That's what we've we've had a couple of nights like that where we've gotten through it and we're just Hey, wait, it's on the shopping list. You can you can see it's, you know, pick up juice boxes and fruit snacks tomorrow or, or whatever. And then that night prior, you're down to one juice box and you're looking through the back of the refrigerator. Is there an orange juice? Is there anything left over? We can better? Yeah.

Scott Benner 30:15
So what is? Sorry, I'm sorry, I'm trying to think about how short how the kind of Daddy daughter thing works with the diabetes? Does it because you have another daughter? Like, do you notice? Do you notice your focus being different? You treat them differently? Even? I don't mean poorly. But like, sure, yeah. Is there? Can you talk about that a

Ann 30:39
little bit? Um,

Bill 30:42
I do in a sense where I could see it. I don't know if it would, you would say I'm harder on Silvia, just because of the diabetes, or she's, she's just a, She's a great kid and a great athlete. And she, you know, she, she wants to do everything. Well, she, you know, I'm gonna take a step back for a second. I remember when she was in Girl Scouts. After a year, she had she did a presentation on diabetes, the pancreas, how it doesn't work. And they all got a patch for the for diabetes, because of her, she stood up. And because of her presentation, she stood up in front of her elementary school after a year being diagnosed, and gave a presentation on stage to the teachers and the students about diabetes and what she had. So So I think from early start, she was she was that way, and I never wanted her to feel she couldn't do anything. So I think I may be pushed her, I still do push her a little bit more, I'm probably a little bit tougher on her to not give up on anything, even if it's not diabetes related. So I, but I, but I don't think it's it's just but that could just be because she's my oldest as well. So you know,

Scott Benner 31:48
there's no way to know, I, like I had a moment with Arden last night, she's away at college, and she's doing a really great job. But there's moments where she's, if she's gonna drop a ball, it seems like during the day, she's decided it's going to be your blood sugar. And, you know, I've been helping her like, you know, like, hey here, but there are times we're gonna like Arden, do something right now. Well, you can avoid this problem. And she's, she hasn't always done it. And she's gotten into a higher blood sugar for a couple of hours. And I sent her a note, let you know, I'm usually like, Hey, do this. And I'm trying to be supportive, and I'm trying not to ruin her, her her college experience. And at the same time, I'm not going to let her get into a situation where she's just like, Oh, my blood sugar's 200. It's okay. And so I sent her a text last night and I said heart, I said, hey, hey, and she was I know, I'm taking care of it. And I responded back and I said, I'm calling in five minutes answer the phone. I might gave her five minutes, because I don't know what she's doing. I want to give her a moment. And she responds back, like a minute later. And she goes, I don't need you to call me. And I said four minutes answer the phone. So I got on the phone, and she was irritated, like she's working on our homework, and I get it. And I said, this is gonna be a quick conversation. I'm not mad at you. I was like, You're doing a great job. We're just have to do these things sooner. You know, we're causing our own problems. You know, you and I are gonna the food is difficult at school. Sure, we're gonna do meals together for a few days. That's it. We just are. I don't need you to do that. I said you do. It's it's the food's hard to cover. You don't know what you're doing. There's some simple things we could do here to fix this. Yeah, that's what we're gonna do tomorrow. And that's, you know, there's no reason to yell at her or anything like that. But I was really direct. And I've said, Look, this is what we're doing. I didn't do what my dad would have done, which probably would have been like, Look, do what I tell you where you're gonna find out what a student loan is. You know what I mean? Sure, yeah, exactly. But I just but I, but I was, you know, I was I was more firm with her than I think we normally are. And she responded, she responded fine to it. And then we talked for a minute, I said, By the way, I think I have COVID I'm gonna go now. And I'm gonna go pass out. But, but yeah, there's, yeah, it's tough, right? Because you don't want you don't want to overwhelm them and burden them with it. And you don't want them to not take it seriously. Right? Is that how you feel?

Bill 34:18
Exactly right. And and I think that's, that's one of my that's one of Andrea, my wife's points with her is, look, this is not, you do need to take it serious you do, do if I'm texting you to treat or if I'm texting you to adjust or do something, respond back to me, take it serious, whatever you're doing at that moment is not as important as what we're talking about right now. So get it, you know, get it done, get it situated, and then we'll figure it out. So I absolutely do you and you don't. You don't want to like use it. You don't want to burden them where it's, you know, she's in the middle of doing something with her friends and she's having fun. But you see, she's dropping or you see she's starting to skyrocket. You don't want to pull her out of that fun situation. But you also have to she also has to learn that This is the way it's gonna be, you know, so figure out that happy medium. But, you know, we do get a little stern with her at times and have to dial her back in to refocus on it.

Scott Benner 35:09
I think I give a lot of weight, also to the conversations I've had on the podcast with young people whose parents pushed too hard. And then the kids just went, like flipped around with the totally opposite way. And like, I'm just not taking care of this at all. You know, like, I'm not i I'm trying to be cognizant of that. of that line. I don't know how

Bill 35:31
that's up. Yeah, absolutely. Yeah. I think we think that to it with everything. We don't ever want her to get to the point where, you know, I think it's seven years. She's maybe said it a handful time that I hate diabetes, right? hate this. She's never gotten she hasn't gotten to that point, often. And I think we, it's because of, you know, how, how good of a job my wife is with her and teaching her and, and part of its Sylvia is, you know, her just her mentality. She's just again, we're just blessed to have such a good kid. We always we joked around about, you know, what if our, one of our other kids got it while our middle daughter she's a she's a pitbull, man. She's, she's, she's tiny, she'll tell you to go to hell in a heartbeat. So we always we always joke like, man, if we were going to have a kid that this happened to Sylvia was just calmer and just more dialed in on focusing on things. So you know, she's made it a little bit easier on us.

Scott Benner 36:24
Yeah. Hey, so this recording is interesting. Like, your, your wife made this appointment, right?

Bill 36:31
She did. Yeah, she was she did. And then she she kind of said, Hey, would you mind talking, talking to, to, to Scott, because? And then so? I said, Yeah, I mean, absolutely. You know, whatever, you know, again, being a sales guy. So it's easier for me to talk than it is for a stay at home mom.

Scott Benner 36:48
No, no, no, listen, this is super interesting. So she she wanted to be on the podcast, but she she chickened out about talking on it. Is that what happened? She

Bill 36:56
Yeah, she basically kind of chickened out on it. But yeah, she's there right now. She's, she's, I'm watching her now. She's listening to me making sure I you know, I get things right as she, as she to be honest with you as she cleans the refrigerator.

Scott Benner 37:11
Do you think like in the last 10 minutes of this, do you think she would jump on with me and talk to me? Is she getting more comfortable? Or does she really not want to do it?

Bill 37:20
Would you be able to talk for a couple minutes? Yeah. Sure. She

Scott Benner 37:23
said, Sure. That's cool. All right. Well,

Bill 37:26
she she I think she I think she's warming up. You see, once once. Once she's done, what she's done cleaning the spilled pickle juice out of the refrigerator.

Scott Benner 37:36
Once she's done that, put it put her on, but I'm interested to see what happened here. But so day to day, you're pretty involved with all this? And are things going the way that you hoped? Like, are you having outcomes with a one season variability that you're looking for? If not, like where's the struggle?

Bill 37:58
I think we are I mean, we're we're still we're still struggling to find her because one, you know, find that sweet spot I guess, you know, using sports terms. It's once we once we feel like we we've got her in a good level. She's She's staying she's staying where there's, there's no Pete There's not many peaks and valleys, and something changes as she gets sick, right? And then we're making, we're making changes to her insulin delivery, or we're changing something out and then it's or she hits a growth spurt, or she turns 13 And those those womanly things come up, and you know, it seems like you know, yeah, as a parent, we're, we want we want our lives or our children, so we don't ever feel like we're doing good enough for her. But, you know, we go to the doctor, we get the pep talk she's doing she's doing very well, she's, you know, she's there, we see so many horror stories that you know, be confident be you know, that you guys are doing the best you can for so, you know, we just never feel like we're doing enough. Of course,

Scott Benner 38:54
not hormone stuff is real. Yeah, absolutely. Yes.

Bill 38:59
She we started last year, and it's sort of earlier this year. And it's been, it's been wild. Say,

Scott Benner 39:05
ya know, yesterday morning, I Arden's blood sugar look difficult. And then we got a little more aggressive with it. And then the rest of the day, it was on the lower side. And you're just like, how did that? How did that switch flip so quickly, you know? And, and then then you come into that last meal of the day, and you're you're a little frozen, you're like, well, in the morning, we needed to be more aggressive. And throughout the day and the Eve in the early evening. We need to be less aggressive. Now. Here comes food. Which one are we going to pick up? Like, are we going to be aggressive here and is she going to get low? Or are we going to err on the side of caution here and she's going to get high? And yeah. If she was here, I know I would have been like be more aggressive. But because she wasn't. She was using her experience from the day like a day where at the end of her day like she had a low Blood Sugar approach her that she ate a lot of carbs to cover and it didn't really, it didn't make her high afterwards. So you're like, wow, so, you know, I was she was trending low all day, but holding on, at all added all these carbs didn't make her high, goes to eat food an hour later and probably thinks, Well, I'm low right now. And then of course, complete opposite.

Bill 40:21
It shoots up. Yeah, we've we've had plenty of days like that, especially especially with sports where you're, you're, you're how do we give this meal your home at home, it's 830. At night, she's going to be going to bed in an hour. You know, we don't want to, we don't want to have to wake her up three times and give her give her juice. So we don't want to be overly aggressive. And then we make a decision to Alright, let's let's give 10 on treat it. And now all of a sudden, she's skyrocketing. And you just think then it made the wrong made the wrong choice. They're

Scott Benner 40:48
wrong. I did the wrong thing. I thought that I did the wrong thing. Because she's like, What do you think? And I was like, Well, what are you thinking? Well, I've been low all afternoon. And I'm like, Alright, so I'm not like, I'm like dangerously low just on the low end, where you're just like, Sure, popping a gummy bear once in a while watching your blood sugar be 75 or 80. And then it drifts again. And you know, like, it's just, it's I don't know, it sucks. Yep. But

Bill 41:12
that's, and that's how that's how Ann and I are a lot. I mean, it's we do kind of handle. She'll be at a birthday party. And she'll you know, we always either food up first, what's the cake look like? What's the, what's the pizza situation? What is how is a thick crust? What is it? So she's doing all that texting me while Sylvia is playing? Hey, this is the crust of the big regular Neapolitan pizza with chocolate cake. What do you think as far as you know, so we're texting back and forth, I got the other kids, maybe, you know, we're home playing basketball or something like that. But he and I are texting back and forth, you know, game planning for when these kids get done, and they're ready to sit down and eat their lunch. So it's always like that. Even at nighttime. Hey, what do you think that was just knocked off? And just give her 10? On treat it? Or do we? And you know, so we're certainly involved together a lot, you know, to where there's times where she'll text me and ask me and I just I, you know, I either can't get back to her. And then I finally do and my answer is the opposite of what she did. And it's kind of like, well, well, I guess we wait and see now

Scott Benner 42:07
that's always fun. What do you think? 10? I think 20 Great.

Bill 42:11
Exactly. Right.

Scott Benner 42:14
But during the day at school, so there's so be pretty, like, self sufficient? Do you help her with meals? Does she go to a nurse? How does that all work?

Bill 42:23
So we she packed lunch every day, so or worse while she started? Okay, she's starting to so we used to pack lunch every day. But now she's starting to buy. So she's pretty self sufficient, where we can see the meals up front. And she's gonna know but she actually doesn't visit the nurse at all she does, she does everything on her own. So she's, she's playing what she wants to eat. And we've noticed what a day she she will get some spikes because she won't make her remind them prior to lunch show sometimes get there and switch it up. So that's, that's that part of being, you know, a, a teenage kid that we don't want her life to be completely planned out. So we'll let her kind of make a decision. But there are certain things where, you know, she she self sufficient. But if we notice it getting out of control, we have to tell her, Hey, look, you got to, you got to learn to we got to figure out how you're going to Pre-Bolus Here, give yourself at least a little bit a little bit before we get into lunch, if you're not sure exactly what you want to eat, and start, you know, start start treating sooner. And then we can figure the rest out later.

Scott Benner 43:17
That's a good balance that it gives it gives weight to both ideas that everything can't be so structured that you're just like, I gotta get away from this. And yet the it's structured in the places that keep her safe and things to that nature. So

Bill 43:34
and that's where we I mean, as she gets older and she's in high school, if if we see she's able to deal with the structure better who I'd love this structure, if you don't have more structure for Hey, this is this is your this is your meal plan for the week. This is what's for lunch, this is what we're going to do. But at this point, I'm not so sure just being that way she just wants to be with her friends being a almost 13 year old girl. We don't want to give that full structure there. Because when she comes home, she's gonna get it. So you know, we kind of give her a little bit of leeway there.

Scott Benner 44:04
Good luck with that bill. Because last last night on the phone, I could feel Arden's irritation with talking to me, like I could feel it in the silence. And I said, hey, hey, and she goes, Well, she didn't even say anything. She just I don't even remember what she did. I just knew it was there. And I was like, Hey, listen, I'm really sick. We're just gonna do this and get it done and move on. And nobody needs to be upset, because I don't have it in me to be upset right now. I was like, let's just have this conversation and get past it. So she's like, Oh, she goes, okay. All right. There we go. It's not the time to pick a fight with me because I don't have enough. I'm barely holding my head up. So

Bill 44:43
she probably she probably could have gotten a win, but she's good.

Scott Benner 44:46
She could have knocked me over easily. I also have, you know, there's also a, you know, I've when I was younger, I would have gotten in the car and drove in the 15 hours to or knocked on her door and been like we weren't on talking yet. You know, so I don't think I Have that in me anymore. But

Bill 45:01
no, I'm curious to see. I feel like I could be that way as well. So, you know, we obviously have five, six years before that. That comes about, but we'll see here, you know, we'll see. I don't want to think about it right now.

Scott Benner 45:15
It's great. All right. What can I try every now? Absolutely.

Bill 45:20
Okay. to hand her the headphones. Thank you. Thanks a lot, Scott. Appreciate it.

Scott Benner 45:26
Oh, Bill, you were terrific. Thank you.

Ann 45:30
Okay. Hello.

Scott Benner 45:35
Is it an or Andrea?

Ann 45:37
Either one is fine.

Scott Benner 45:39
Because he flipped back and forth so easily between con you and Andrea wasn't sure. Yeah.

Ann 45:43
I think he uses both everyone does.

Scott Benner 45:45
I first I thought you guys might be Mormon. And there were two girls there. But I realized that it was just it's you one of the others.

Ann 45:51
Oh, yeah. No. No. Okay. I'm not Mormon.

Scott Benner 45:57
So I don't know how much you heard in the beginning. I'm viciously sick. I have recently tested positive for COVID. I've been sick for a week. Doesn't matter. I'm doing good. But I need to know before I die, because this could kill me. Okay. You're well, you're like sign up is one of the most like, interesting and confusing. Alright. Can you hear me? Hello? Yeah, yeah, it's

Ann 46:24
just crackling a little bit.

Scott Benner 46:26
Oh, I'm sorry. i It sounds clean on the sensor. I didn't know that was happening. Okay. You signing up to be on the podcast is one of the most interesting confusing things that I've I've got, I've had like making people sign up. There's some questions like, Hey, this is what you know, What's your connection to diabetes? What do you want to talk about? Like that kind of stuff? So did you sign up to be on the podcast?

Ann 46:49
I signed bill up to be on. But physically you did the typing is what I'm saying. I did the typing. Yeah. And I felt and I asked him, Hey, would you want to go on?

Scott Benner 46:58
Okay, because I was. So on my end. It just says, you know, Andrea? And then it asks questions about like, why you want to be on everything. There's no, like, the I understand, I'll be purchasing a little discount. There's no answer about what you want to tell. And I must have

Ann 47:15
missed that part. And he asked me, What am I supposed to talk about? And I said, I don't know. I guess you just talk?

Scott Benner 47:20
Well, that's what usually happens. But so I just look and I'm like, okay, whatever, this is what it's gonna be, I'll be fine. I didn't know I was gonna have COVID While we did it, no big deal. Like, if I take too deep of a breath right now, I think I'm gonna fall over. But so I just, ah, found a nice pace. Anyway, so a few I don't know how long ago, I get an email from Bill. And Bill's, like, Hey, I'm coming on the podcast. And I'm like, Are you like, I like some, I'm searching his name. And I'm like, I don't like I don't have this person on here. You know, like, I don't know what's going on. And then I then he starts telling me, No, my wife signed up for blah, blah. And I'm like, Oh, okay. So I just could not figure out what was happening.

Ann 48:01
Oh, yeah, I signed up under my name. And I figured I'd just hand it over to him.

Scott Benner 48:06
And what what was your? What was the onus? Like, why did you want for you or he to be on the podcast? Like, what was? What's the idea that you wanted to get across?

Ann 48:17
I just thought that I don't know the way my daughter handles diabetes, I think it could maybe give a better impression to newly diagnosed parents. Okay. Parents of newly diagnosed children just that I see a lot of posts and blogs and things just being so down and so sad, which it is. But I just want to show like, it doesn't have to be forever, you know, you can be positive, you can move on. You can do anything that you wanted to do normally. Things like that. I gotcha. Yeah. Just more positive experience. Really?

Scott Benner 48:57
So did you have like, did you have a bad experience that you were able to move in a positive direction? Or do you think it's just your daughter's personality in general?

Ann 49:09
Her personality, her personality, I think she took it better than I did. At first. I was really super sad and just seeing her be hurt. She thought she was being hurt by the needles. She thought everybody was hurting her. And that just made me sad for longer than it made her sad. She she moved on quickly. She went right back to playing soccer, which she didn't stick out but

Scott Benner 49:34
it makes sense. She just gone sport and I mean, honestly, they run back and forth and nobody scores you can't it's terrible.

Ann 49:40
Oh yeah, my kids all tried soccer and quit.

Scott Benner 49:45
But But So you think that well, not you think but you were I mean, were you sad like depressed or sad? Just like sollen like for a while. How long did that last for you?

Ann 49:59
Oh a while. Till a couple months, I would say.

Scott Benner 50:02
And she Yeah, she wasn't in the same space like she had left that. No, we're still on it.

Ann 50:07
No, they were getting in trouble in the hospital, her and her little cousins putting the bed all the way up. The nurses kept having to come in and tell them to calm down. And she was she was okay. Yeah.

Scott Benner 50:18
So the I mean, the sadness is the life change. You didn't know anything about it, I imagine, right? Like you never once looked at Bill's brother and thought, oh, he has type one diabetes. I have to worry about this for my kids. Like you didn't have any Yeah,

Ann 50:31
no, no, never thought about it. Okay.

Scott Benner 50:35
So how did you get out of that feeling? Do you know?

Ann 50:38
Oh, no, I don't know. I guess it just kind of stopped. Yeah, yeah. I guess just time. I guess. I'm being busy. Busy with other kids. And

Scott Benner 50:50
so you're the plan here is make so many kids that you don't have enough time to focus on life's problems, I believe. Yeah, just

Ann 50:58
get overwhelmed. Fill it all up.

Scott Benner 51:01
It's like the 1940s They're like, I don't know. We had nine kids. One of them got lost. We didn't even look for it. You know, like,

Ann 51:07
Yeah, that's probably Yeah, our kids were all back to back. They all play sports, three sports a year. And then we just swim all summer. So yeah, we just moved on with life, I guess.

Scott Benner 51:18
Yeah, stay busy and keep moving. And so when you when you say you see other people kind of in the sadness, like you know, where they've been, you've been there. And are you afraid that they're not leaving?

Ann 51:31
Kind of sometimes I feel like well, maybe if you just tried, like the way they yell at you get mad at school and just stay so angry, which we had our share of things with school to really bad experiences. But I don't know, just the way the negativity just stays there. And they just stay mad. Like, everything is so hard and it is harder. But you can work around things a lot easier if you're more positive. Well, I will

Scott Benner 51:59
say one thing that I think might make you feel a little better, because my experience with online communities is that there's, there's different waves, right? Like there's newly diagnosed people who are scared and don't know what they're doing need help. Then there are people who move on to the I don't know the phase of being upset about everything about diabetes, right? Like I heard a comedian make a joke about sugar. He doesn't understand I'm gonna get him fired. Like, you know, like that whole thing. Yeah. And then there's the you know, we're being treated poorly by the school the these people this I tried to go to God, what was the one I saw the other day, like, somebody tried to go to a water park. And the people that they the waterpark wouldn't let us bring in our food. And you know, like, I'm like, ya know what, no one knows about diabetes. Like, yeah, you know about it, like they know exactly. Right. And you have these big you see these big reactions from some people, by the way? I don't think everybody you know, that walks into that water park for the first time with diabetes and is told you can't bring in outside food. I don't think everyone starts a letter writing campaign. I think some people just go, Hey, stick that food on the backburner. sneak it in. Let's get going. You know what I mean? Like,

Ann 53:18
now, and maybe we're lucky, but we've never had a problem. We went everywhere. Like, yeah, Phil, you know, Philly stadium, we were just at the Eagles stadium for a different game. But all he did was say, Hey, you should have taken the medical line. And I was like, sorry, I didn't know. You. Just like, okay,

Scott Benner 53:32
and that was it. Yeah, well, I so my point was gonna be that sometimes online, you're seeing people in these bands of experiences. And it can feel like everybody feels that way. But I think I think it's just the most the the people who are the most lost and scared and in need of help are usually more vocal. I think. I mean, I'm not sure like maybe the world's full of people who are just like, everything sucks. And this is horrible. But I don't think so. I think that there's a time during your diagnosis when you feel that way. And yes, it's helpful. I like them. I almost prefer that they voice it because then when you see it, you can think well, oh, they didn't need to do that. Or they could have done this this way. And it kind of spurs conversation. I think you'd get it through. I think the problem is that the following month when the next person feels that way, it can start feeling like that's the only thing people are talking about. So I tried to stay positive on there and you know, let people tell their stories of successes and things like that. So for Sylvia like what are some of the things that are going right for her now?

Ann 54:45
Um, she loves not having to see a school nurse. We stopped seeing the school nurse last year just because mainly her school is so big, and it was too inconvenient to walk there. Yeah. So that is That was a that was really good for her. She loves that she loves not being singled out. Just being able to treat herself when she needs to watch the Apple Watch solved that so she can always hear the phone. It's, you know, quieter. What's up with all my messages.

Scott Benner 55:15
So you're on the Apple Watch. I'm

Ann 55:16
just playing field hockey, she stays after school every day for two and a half hours. The Running is tough. That's really hard to figure out. Because she runs pretty much for two and a half hours after school. So that was really difficult. I don't think we figured it out even to the end.

Scott Benner 55:32
She is she so first of all, she uses a pump. Omnipod five. Alright, shall we? Okay, so how long have you been doing that?

Ann 55:42
Since July?

Scott Benner 55:45
Oh, pretty. Pretty. Pretty close to the beginning. Yeah. Okay, you're about three months into it. So is she? Is she utilizing the exercise mode? Or is she Yes. Is that helping?

Ann 55:59
I think it helped more with swimming over the summer. But with the running, I don't know if it did very much. So she's, she still went in with like 40 uncovered carbs and then treated mostly halfway through it most of the times.

Scott Benner 56:16
Okay, so when she's gonna do all this running, it's for field hockey, right? So she's, she's taking in a pretty big snack prior to field hockey and then running and then halfway through this two hours of running, she actually needs more food. Yes. Okay. Is she getting low after practice? Or she making dinner? Okay?

Ann 56:36
She'll make it to dinner then. Okay. And I try to try to get her up to like 200. So she doesn't have to stop while she's running. And she can keep because they raise they do a mile all kinds of exercises.

Scott Benner 56:50
Right. And there's not a ton of pausing in between, they're going from one thing to the next overnight.

Ann 56:54
No, not really interesting. Yeah. What is she? Yeah, the running is difficult.

Scott Benner 57:00
What does she eat before? What does she use? I usually give

Ann 57:03
her a juice box and a protein bar. So it'll be like 30 carbs. Or sometimes she'll have peanut butter sandwich. Nutella sticks. I tried to get it to 30 carbs. So you

Scott Benner 57:15
do some, like a little bit of fast acting with the juice. And then you do a little more like slower acting carbs with the the bar or the peanut butter.

Ann 57:25
That's what I try for unless she'll change it. She'll say, oh, somebody gave me a snacks and then she'll be in something else. And but yeah, she I try to make sure she has 30 carbs.

Scott Benner 57:34
Okay, what sir? Would you share with me? Like, what's her agency right now?

Ann 57:39
Seven. Oh, that's

Scott Benner 57:40
great. Well, yeah,

Ann 57:42
she is she stays steady at like 7.2. Sometimes up to 7.4.

Scott Benner 57:47
And this and this is mostly a function of what you're shooting for because of how much activity she has.

Ann 57:53
Yeah, it makes it harder to stay at the lower numbers.

Scott Benner 57:58
What does she think? Well, what that's what if, listen, if that's your experience, and that's what's happening. So what about beyond the field hockey? Like, is she playing another fall sport? Oh, yeah. Softball. Okay. Wow. So that's mostly what practice at night and then weekends, tournaments.

Ann 58:17
Yeah, yeah, right now, she hasn't done a tournament for this one yet. She was just on a football team that just ended. And now it's a fall travel team. And so to her first one next week, but they'll play two games. How old? Is she? 13. She'll be 13 Soon.

Scott Benner 58:34
Does she? How much does she like love the sports part of it? Like, is it? I always wonder about sports? Like, is she doing it? Because that's what she thinks she does. Where is she doing it? Because she really loves it?

Ann 58:46
Because I know she loves it. She loves it. She wants to beat everyone. She just loves it. It's her. It's who she is. Yeah, she could we don't we ask her. So you don't have to do it. Do you want to do it? Somebody asked her to be on the football team. And I said, Hey, it's up to her. So I'll go home and talk to her about it. And then she was like, yeah, absolutely. I mean gym class. She's tough. She's like, probably the worst person in gym class. She does yells at all her friends and I asked her good answer the other day. Can you tap test please? She's like, nope, kickball.

Scott Benner 59:27
ARLEN came home one day and she said the gym teacher pulled me aside. And I was like, what she goes he said, You can't throw the ball that hard at people. And she's like, What are you talking about? So they were playing one of those like, just half the classes on one side of the gym and half on the other side. And he's like, give you these balls. You throw them back and forth. It's dodgeball basically. Right. And, and she's she's like, What are you talking about? She's like, people are complaining. And she's like, that's so funny. Because those are i She's like that. They're boys. Oh, Were there I hit like I, like, you know? And she's like, No, it's everybody like you can't you throw the ball so much harder than everybody else. You can't do that. And that is so fun. She took so much pride in that story. Like,

Ann 1:00:12
I bet she would love that. Yeah,

Scott Benner 1:00:14
compliment exactly where everyone else is just like, oh my god, I'm hurting. People aren't just like, apparently I'm not allowed to throw it my full strength. What else is a baby? That is so funny. But But when Oregon stopped playing softball, she never looked back at like, once she got hurt, and so she couldn't play. And then she just like, you know, as we were trying to get her back again. She's like, I'm done. She's like, forget it. And I was like, Yeah, okay. And that was kind of it. I've never once. I've never once thought that she is sad that she's not playing softball anymore, which really surprised me. But it was, it was interesting to learn. Yeah, no. So we'll see. I mean, she just don't know. Last night. Last night, two nights ago at college. She got to meet Miles Teller from that top gun movie. You know, I'm talking about?

Ann 1:01:08
I don't I didn't see the new one. I don't really remember the old one. I know. I've seen it. It's okay.

Scott Benner 1:01:13
It's a it's a handsome young man to have the shirt off in the movie. And he's an act. Okay. Um, he came to a film festival with her college. And oh, wow. And, you know, she was she was dressed like she was like she was in the movie. And having such a good time. And I thought and I actually remember looking at the picture thinking like, I can't believe that's the kid that used to like, dive around the dirt. And for all I know, she'll

Ann 1:01:36
teams one day. Yeah,

Scott Benner 1:01:38
yeah, it's it's so super interesting. Okay, so we're up on an hour. And I know you didn't want to do this. I don't want to push you too far. I just wanted to get your voice on here, because I was worried at first that you were that he had you chained to that refrigerator that, you

Ann 1:01:54
know, someone spilled something and left it, you know, like they do.

Scott Benner 1:01:58
Yeah, no, no, no, it's my it's my whole life. And it's my whole life. Guy. Did it ever walk past the sink and say, Does it ever occur to any of you to, like, wash one of these off or move? Oh, yeah, forget it. Nobody cares. Like if I wasn't here, I know. Like, we're all sick right now. There's three people in the house. Three people are sick. If and I really I realized this morning, if I was dead. My wife would abandon the dog sent me the like, just leave. She would just be like, I'm not taking care of those things.

Ann 1:02:32
Does everyone have COVID

Scott Benner 1:02:35
Kelly came, Kelly had to go to Paris for work. She came back had COVID and we isolated her. And then she was okay and tested negative. We even kept her in there extra time. Let her out. She had a rebound after she was back in the house. Oh, then Cole and I got sick on the same day. But we did not test positive for COVID. And now it's like one two. I'm like six days into being sick. And last night Kelly came up to me she's like, just take another one of these COVID tests. I told Bill like the barely put the thing in the thing. And the line just was like, bang you have COVID Okay, so apparently that's what I have.

Ann 1:03:16
That's what happened to my family to the positive came right up. Yeah, immediately. That's what he was saying.

Scott Benner 1:03:21
So anyway, yeah. So I basically think I used up all my days energy to have this conversation with you on bill, but I'm glad I did it. I'm not certain what's gonna happen when I say goodbye in a second. But I think a nap is coming. Oh,

Ann 1:03:35
well, you know what, really quick. What's funny about you saying, you know, no one would do anything if you were sick. They all got COVID Except for me. And I was able to take care of everyone keep everything clean, clean up after them serve them. Oh, no, I didn't get it. That's definitely.

Scott Benner 1:03:49
Maybe you got oh, maybe you got a little good karma out of that. Like, although I was helping, and then all of a sudden I'm sick. So apparently karma doesn't care about me. But oh, but no, I listen, they're all terrific. But just you know, some people are more focused on things like I am sick. We're all sick. But I got up this morning and took the dogs out. Like, those dogs want to go out. They have to go outside they want to eat. Everyone else is just like, look, I'm sick. The dogs will live. And I'm like, Oh, okay. All right. This is why I didn't want dogs. I hope you all feel better injured. I really appreciate you doing this. Please thank Bill for me as well. Okay, and if you hold on one second, I just need to tell you like two things before you go.

Hey, how about a big thank you for Bill and Anne for coming on the show today. And of course let's thank cozy Earth and remind you that cozy earth.com My offer code juice box at checkout will save you 40% off of your entire order. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes doesn't matter if you have a lot of type one to your caregiver. You're welcome there. 40,000 members strong 300 new members every seven days. Check it out. It's a fantastic, fantastic environment. Are you looking for the diabetes Pro Tip series? It begins at episode 210. In your player, maybe you're looking for the bold beginnings, the defining thyroid or any of the other series, look for them in the feature tab of that private Facebook group or at the top of juicebox podcast.com

#956 Diabetes Myths: Type 1 Diet Restrictions

A brand new series examining the myths surrounding diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 956 of the Juicebox Podcast

Jenny is back and we're gonna do another diabetes myth episode today's topic was sent in by listeners. And they say that people think that they have diet restrictions because they have type one diabetes. Jenny and I are going to talk all about it and read some listener feedback. 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. Save 10% off your first month of therapy@betterhelp.com forward slash juicebox. Get a free year's supply of vitamin D and five free travel packs with your first order at drink a G one.com forward slash juice box. And you will in fact save 40% off of your entire order. When you use the offer code juice box at checkout at cozy earth.com I actually use that offer code the other day and bought myself some clothes, cozy earth.com. If you're looking for the bold beginning series, the diabetes Pro Tip series, the type two Pro Tip series or any of those sorts of things, go to juicebox podcast.com. Look up in the menu or in the feature tab of the private Facebook group Juicebox Podcast type one diabetes. This episode of The Juicebox Podcast is sponsored by the Omni pod five, you can learn more and get started today at Omni pod.com. Forward slash juicebox doesn't matter if you prefer the Omni pod five, where the Omni pod dash, my link is the place to go. omnipod.com forward slash Juicebox Podcast is sponsored today by better help better help is the world's largest therapy service and is 100% online. With better help, you can tap into a network of over 25,000 licensed and experienced therapists who can help you with a wide range of issues. betterhelp.com forward slash juicebox to get started, you just answer a few questions about your needs and preferences in therapy. That way BetterHelp can match you with the right therapist from their network. And when you use my link, you'll save 10% On your first month of therapy. I was thinking that we could tackle the myth today that people with diabetes have diet restrictions. Sure seem fair. Okay, that seems fair. So I'm going to just go right to the first piece of feedback. Okay, this person said, people tell me that type ones can eat certain things. And I have a couple of family members that tell me about my type one, and oh, how he can't have this. And he can't have that. And, you know, maybe they should shy away from this. Like, like, it's a lot of that verbiage is being used, like, you know, so this person is trying to tell them, Listen, my kid can eat food. And here's how it gets handled. But people don't want to hear it. It seems to be the biggest problem. Next person says, everyone thinks I have to eat sugar free everything. That everything I eat has to be diet, but a lot of that stuff tastes gross to me and I don't want to eat it. So even that even that is interesting, right? Like the person does not want to eat the thing, but they're getting so much pressure from someone that they've tried it. They now know that they don't like it, but they still feel the pressure. Right? Yeah, absolutely. Does this happen to you?

Jennifer Smith, CDE 3:46
Ah, let's see. Recently, no. But in the past, in the past it has and I think and I think we met we talked about this in one of the other myth episodes as well is there's some old school thought to what's being told about what you can and can't right have. I mean, years ago, when I, the years after I was initially diagnosed, there were things that were just, I don't do them anymore, right. But they're also things that my family just, they just didn't do either. So it wasn't a my brother gets this but Jenny doesn't get this. My parents were like, No, it's going to be fair and clean. Everybody is just going to do it the way that Jenny does it right. At holiday kind of types of gatherings with friends or family my my favorite aunt actually, she would always make the vegetable tray right? Because those at that time were considered free food. And so Jenny could always have Have those items versus the other trays of things that were all of the cookies and treats and the bars and whatever, which did my parents let me have that occasionally? Sure. But they were definitely more of a, I'm not the greatest to have or indulgent or have four cookies at one gathering with friends just because I wanted them. Could I have had them? Absolutely. At that time, though, we didn't have the knowledge of how to take care of that. Today, we have the technology, we've got the information. And so I think it we have to transfer that old school thought into today, we've got insulin that works faster. We've got technology, we've got a visual on our glucose levels, we've got machines and pumps and things that they leap over that, yes and no food, and they allow people to absolutely eat what they want to

Scott Benner 6:01
eat. Yeah, it allows the separation between what should I have nutritionally? And what can I do without it impacting my diabetes poorly? Because you know what I mean by that, like the Cookies, cookies are a great example. No one, none of us should be eating four and five cookies at an event? No, no, but we. And I think these things get blurred together sometimes. But if you're going to eat them in your blood sugar is gonna go to 325 for four hours. Well, then that seems like a more imminent, you shouldn't do this. I think that's the two things to get blended. Right?

Jennifer Smith, CDE 6:37
Correct. Yes. Well, and I think you brought up a good a good point there. Like, nobody should eat four or five cookies at one time, you just shouldn't. And so there's a whole nother avenue of a discussion that is a little different than this, but it it kind of gets blended in because if all the kids or all the adults are doing something at a party or a gathering or a social event, or at a business meeting or whatever. Sure, you can follow suit. But in general, is it really good to do it all the time? Yeah, no, it's just not.

Scott Benner 7:18
And I see, you see where the resistance comes from, from the mother of a child, a father of a child or the adult living with? Because you don't want to be told what to do? Like, that's the that's the worst feeling in the world. Like, you can't I mean, you can't eat that as a statement, or a direction. Right has to be incredibly difficult to hear, right? And then you go, Yes, I can. And either you think, yes, I can, because I know how to cover it with insulin, or you think yes, I can, my blood sugar is gonna go up and I don't care. Like I'm not going to be stopped by this thing. Right? These things are, again, they're completely different. It's so interesting that you said about the plate of vegetables, because the next thing on the list says, I wish that people understood that candy is, you know, I'm told all the time that candy is the root of all evil, but somehow fruit is okay. And so she she gives an example. I'm not saying By the way, you should eat candy over fruit. This is her bigger point. A family member that meant very well made a beautiful tray of fruit for a holiday party, brought it put it down and came over and said, Hey, I made this because I know you can't eat the other stuff. You can't have desserts, right? Meanwhile, the impact from a fruit tray or the impact from a piece of cake is probably the same. Maybe worse. If it's the fruit like who knows, you know? So again, nutrition and blood sugar, two different ideas. Are you better off eating a plate full of fruit? Sure you are. Right, then then having a plate full of cake nutritionally, of course, that makes sense blood sugar, right? Maybe no difference.

Jennifer Smith, CDE 8:55
Maybe no difference and or, you know, maybe in fact, depending on the cake, or the cookie or whatever it was with cream cheese frosting. Maybe the cake actually doesn't hit you like the big plate of grapes and cherries that you're planning to eat instead. So it's a spike now versus a spike leader. So but they're absolutely it's a great point. I mean, it's sugar is sugar is sugar. Sometimes there's more complex sometimes there's a little bit slower, something that mixes up how that sugar impacts your blood sugar. But yeah, I mean, lovely that the person was like, Hey, I brought the fruit for you. You're thinking that's great. I'm still gonna have the key I got you

Scott Benner 9:36
covered. Don't worry. I know about I know all about your bees. I'm on top of wonderful. I don't know wait here go. My most recently my father said to me, oh, about my son. His blood sugar must be so well controlled because of the diet weed. And the person said it's not because of that at all. I know how to use insulin. And so by But that's not but that's not what the father sees. The father sees, oh, the kids not spiking all over the place, it's got to be this food that gets so interesting how people see ghosts and so many things, they think they see something, it's not really there. Now, sure, the other side of this would be if you ate a very low carb existence, and you had type one diabetes, you would require much less insulin, you'd have much less variability. And there is no doubt that from just that blood sugar perspective, things would be easier, very likely, right?

Jennifer Smith, CDE 10:32
Very likely abs, yes, 100%, the majority of people who really are following a very low carb, or what a lot of people call a ketogenic diet, right, there is a lot of stability following that. And if you're doing it the right way, nutritionally speaking, you're not necessarily doing all of the fancy stuff that's on the market, but you're actually just eating clean food, and getting in really low carb intake and high fat intake, to complete your caloric need, right, you're gonna get stability, you're probably going to get some weight modification, you're going to go down in insulin need, although your insulin needs will change in a different way you'll learn insulin effect, to work with that type of fueling plan, in a very different way than covering for carbohydrates. Yeah,

Scott Benner 11:30
I once had lunch with a type one who ate completely like, no carbs, all meat, this and 45 minutes later, they picked up their controller and gave themselves insulin to Bolus for the protein and the fat rise that they knew where it's gonna come. It was much less insulin, etc. I think again, the problem comes when this is a little different than the other thing, but in the diabetes community amongst the group of people together, who all have diabetes and have different experiences and have figured out different things. If you say, Hey, I don't know how to like, stop this spike, my kid went and had ice cream and this spike happen. You're gonna get somebody who is very low carb, keto, something like that. And they're gonna come in and say, oh, you know, don't eat carbs. And that won't happen. And you're like, well, that's not helpful. You know, like, like,

Jennifer Smith, CDE 12:24
Oh, that's not what, that's not what I want to do. Right? It's not the masking, right? That's not the question, right?

Scott Benner 12:30
Yeah, no, that that's, you know, it's not a Hey, Doc, it hurts when I do this. Don't do this anymore. Like, it's a decision you've made as a person eating that way, which I think is terrific. If anything, you figure out what works for you is amazing. You know, so but you can't just show up at somebody's door and say, you can't you can't eat carbs. That's the problem. You can eat carbs. I'm not going to bore you with it. But artists 24 hours, or just last 24 hours include a late night meal. I'm talking like 10 o'clock at night. Rice, steamed carrots and shrimp. Now, were there concessions made its basmati rice, not white rice like sure, right? Correct. All right. And there's not a bunch of there's no breading on the shrimp. It wasn't fried was sauteed like, okay, right, those things. But there, I gave her a bowl. I mean, between the rice and the carrots, and there had to be 45 carbs in there maybe like more maybe? Who knows?

Jennifer Smith, CDE 13:30
Let's not have been a very big bowl. It was pretty. It wasn't huge. I've been here. Okay,

Scott Benner 13:36
fair, a fair amount of rice, more carriage than rice, the shrimp except her blood sugar has not been under 70 or over 120 in the last 24 hours. So that it's doable. I saw her during the day, have a little chocolate thing where she ate a bunch of those little dove, like dark chocolate hearts. Sure, you know, like, I don't know, like, it's just do people with diabetes have a diet restriction? Yeah, no, but no,

Jennifer Smith, CDE 14:07
no and. Right. It's a little bit of both. Like somebody actually asked, I think this definitely fits here. Somebody asked me not long ago. Well, do you restrict yourself? No, but I also have certain preferences. I have many years of learning what I can do almost all the time, and I know it well enough to take care of it and handle it right. And then there are the things that are there not the 80 to 90% of quality food that makes up from a fuelling standpoint, from what I want to put in my body because it needs good nutrients, right. Those are the foods that I don't restrict them. But when I do the non typical foods I tend to do them when I know I can I say good got away with it. I don't. And I don't mean it in that way, but it's kind of the way that it works out. Like, if we're, if I've had a day that I've had just a lot of activity, or I've had a really good run or something like that, I have a sensitivity component that I can get away with. Now we're gonna go out for like the dinner,

Scott Benner 15:24
a lot more insulin, because you've got all that exercise on board. That's gonna correct,

Jennifer Smith, CDE 15:27
right. So I'm not restricting. I'm just, I guess I feel like I'm saving those types of things that I may want to do occasionally, for times, when I know that it's really going to work out to my advantage, and that I've figured out how to work it in.

Scott Benner 15:41
I feel like the word restricted stems from this idea that we should be able to just eat as much of anything that we want. So it's like, it's like an American freedom idea. It's like, you're not gonna study, right? We're gonna, I'm not going to make a pork chop for lunch, we're going to kill a whole pig. And you know, that kind of thing. Like, like abundance, like that whole, like, bigger is better. I mean, you go to some restaurants, and they give you food. And I think is this for all of us? Like, like, I but eventually you just eat it. You're like, Okay, I'll eat this. And then that like clean your plate mentality comes into your head. It's interesting how, in the 50s, it was clean your plate, right? So that's how our parents, my parents were definitely raised that way, like clean your plate. This foods expensive. I mean, if you grew up at my time, and somebody didn't tell you, there was a child starving in Africa. So you had to eat all this food, like I don't know, like that happened constantly. Well, and there

Jennifer Smith, CDE 16:39
were commercials for it on television. So wasn't just that you were hearing, or seeing these poor children.

Scott Benner 16:45
Oh, my parents knew they had television, right, like so this was the way people spoke. So now, we shift into a more kind of abundant lifestyle in more modern times, but we were raised with, like, eat all that food. Like if I think back to the amount of food my mom gave me versus the amount of food a restaurant makes, and then I start making for ourselves, those are significantly different portions.

Jennifer Smith, CDE 17:09
Yeah, I was actually going to ask comparatively, if you remember, what was the difference between what was put on your plate as an expectation, you will eat this, versus what we now have the ability to put on our plate, you know, if you have access, and enough to do it, it's probably at least double if not maybe triple. In some people's eyes,

Scott Benner 17:31
my simple example is this, my mom would buy five pounds of potatoes, and try to figure out a way to make them last until spuds started growing out of them. I open up a bag and I go, Oh, just make these five pounds of potatoes like this. As far as someone said they wanted mashed potatoes, obviously, five pounds is the way to go. And then. And then eventually they go into the refrigerator. And people kind of pick it them throughout the week. I'm not saying we'd five pounds at a sitting. But I do think you put more on the plate because it feels like generosity, it almost feels like love, like here have a bunch, you know, like that kind of thing. And so I think that again, these things get blended together. And that's where these conversations end up coming from. Yeah, absolutely. I realized, Jenny that the myth series was going to be more about psychology when we started it, by the way, but Oh, been fun so far.

Jennifer Smith, CDE 18:23
It has Yes. And I think that's another piece that as you talk about portion, I think it's a really big missing piece in education overall, it really is. Nobody, nobody these days gets educated about a real portion of meat or a real portion of vegetables or what a portion of fruit should look like or like your potatoes, like half your plate shouldn't be potatoes. I don't care if you like, half your plate doesn't need to be potatoes with three sticks of butter on it. So necessary.

Scott Benner 18:56
I just recorded with Jake leach yesterday from Dexcom. And that he discussed how they're going to present a sensor next year that's going to be for people with type two who don't use insulin. And my Oh, which is terrific. Right. And I immediately talked about how you know Arden moved from G seven from G six. And we had two sensors left and a transmitter. So I put it on my brother who has type two diabetes. And in 10 days, the light bulbs that turned on for him that hadn't been turned on in years of doctors yelling at him you don't eat right, like, you know, like, probably not trying hard enough. Like all that stuff. He suddenly was like, Oh, I see what happens now when I eat these foods. And it's so quick. It turned the light on for him. But people don't know about food. Like it's just so this is it. This is exactly what happens here. You get diagnosed, somebody tells you you can't do a thing. You brusque against that because you don't want to be told what to do. Somebody else who has no idea what they're talking about says something to you like let me read a quote here. Oh, I didn't know she could eat that. Or when this woman says her co Workers brought snacks pass them out to everybody skipped her

Unknown Speaker 20:03
except

Scott Benner 20:07
as she cruised by, I'm picturing a cubicle said I know you can't have this and rolled right past her. Right? So, or even when somebody here says they're trying to stop a little blood sugar with a pack of Smarties, and during the low blood sugar incident, someone a loved one looks at them, he goes, Do you really think you should eat all of them, you have diabetes. So, so when those things get blended together with just the misunderstanding about food to begin with, and this generational inclination to eat more, give more. It's what led me to say, when you and I did an episode about like ozempic, and things like that we did like a type two, it was part of the type two series, I had this kind of like whimsical idea while we were talking that I've not let go of yet, which was if you injected everyone right now with this stuff and took their hunger away, that in one generation, a whole new group of children would not eat as much food, because you would draft you would teach them to eat less by example. Absolutely. I'm saying we should like put it in the water or anything like that. But like, you know, it's not wrong. Like if everyone's parents used less food, more nutrition, it would literally take a generation for that to flip flop around. Right? Yeah, yeah. And I saw it just recently, because my son has been gone for seven months, he's been living on his own. He flew back to spend a couple of days around my birthday. And he had a couple days off from work. And while he's off on his own, he's cooking for himself, pre making his meals, he's trying to be very conscious about money. But also he realizes he's not as active as he used to be, like, all that stuff. And he came home, and he started eating more like he was a kid than the adults that he is off on his own. I noticed that in a couple of days.

Jennifer Smith, CDE 22:00
It's because mom and dad's house has more up here,

Scott Benner 22:03
because we have more money, because we make more money than he does. And so there's extra stuff here. And he's like, Oh, I haven't had these in a while, which was I didn't want to pay for these. But then his stomach started hurting. And I was like, Yeah, you're eating better on your own because you're eating less food. It's for you. It's because you don't have as much money. But who cares why the truth is he's making clean meals for himself. And I don't know, it just it's all so freakin obvious.

Jennifer Smith, CDE 22:34
And the interesting thing is that he's learned that almost on his own, it's not like you gave him a big a big sit down lecture before he left the house to be like, You know what, you really have to think about all and maybe you did, maybe you talked about some things in terms of budgeting, or he just saw that while he was growing up or whatever. But he's kind of taken this on, on his own, which is, it's really adults, like good for him.

Scott Benner 23:01
That's fantastic. I'm excited for him the extent of what I mean, listen, we're careful with money in our house. And that stems from me. You know, while we're talking about where everything comes from, I grew up broke. It's not hard to figure out right? And so, but on the food side, I've told them throughout their life growing up when they were old enough to understand, I grew up like a monster with food, like everyone, for the most part did unless you had a nice granola mom like Jenny who's like was going to be like, hey, I'll grow some stuff in the backyard. Like the rest of us. The rest of us grew up eating like Kentucky Fried Chicken and drinking orange drink and thinking it was juice and like anything you juice was good for you, etc, and so on. And like so I figured it out as I became a young adult.

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And I did my best to change the course of the ship. But it wasn't that easy. So, you know, so I told I would tell them along the way, we've done our best to give you a better view of food. But the truth is, you do not have a completely correct view of it. Like it's better than what I had. And I'm moving in that direction again. But and they took that seriously. So, you know, I got lucky there, basically, yeah.

Jennifer Smith, CDE 26:40
I know. I mean, we've tried to do the same. You know, with our kids, we have a garden, we teach them where food comes from, we've taken them to farms, they know what a chicken looks like, they know what a cow looks like they know where food comes from. And a lot of people just don't have the opportunity or understand that that's an important thing to teach. I mean, we've teach we teach portion, like my kids know how to read a food label. Not many kids their age, without diabetes, know how to read a food label, you know. So, you know, these are again, they're things that aren't being taught. And we need to remember to teach them I would say that people with diabetes are probably a step ahead in terms of understanding compared to the general public, which isn't a bad thing. Yeah.

Scott Benner 27:25
So I've so that's my public service announcement, you should eat better, you should eat whole foods and limit sugar intake and like you shouldn't, you know, your day shouldn't be 600 carbs or something like that, you know, like, like, all that's aside. Now, having said all that, if you can't accomplish that, for some reason, the answer isn't give away your diabetes health on top of it. Like right, that's it. So maybe you'll get the eating thing together, and you'll figure it out. But in the meantime, we don't just go Oh, sugar makes my blood sugar go up, and I don't do anything about it. And I can't stop eating ice cream. So I guess I'm gonna die. Like like that's, that's what the at the core of what I think this podcast is about, I think it's about taking the correct amount of insulin for what you're eating.

Jennifer Smith, CDE 28:08
Correct. And that goes right along with not having to think about the word restriction, right? It's learning how to use this medication that we have to have in order for the food that we choose to put in to actually work well and keep our body healthy. Long term. Yeah,

Scott Benner 28:27
I choose to take a bigger, holistic view of the whole thing. I don't I think that it's obvious where we all are as a society. I don't think that you just changed that with a light switch because someone told you you have type two or type one diabetes. So we're going to take care of our health, learn how to manage that. And then hopefully over time, you will come to a better understanding about your food. And if you don't, at least your blood sugar's have been under your control threshold. And by the way, at least, amazing, you know, right? That's always been my, my perspective. Like if I step back a little bit from like two people having a conversation and talk to you like the person who makes the podcast, it was my expectation that we didn't you can't make everyone do the right thing. So they should have as many tools as they have to apply to whatever their thing is correct. Yeah. And I don't have any trouble with it like to say that. I don't want people to hear that and go, Oh, he says Bolus for whatever but he's at home eating quinoa. I've never had chemo on my life. I couldn't identify. And I had three chocolate chip cookies last weekend. But, but what happens again, like Jenny, our pediatrician diagnosed us and the first thing I thought is I can't bake anymore. I love baking. You know like so that's that's how that hid a person who didn't know anything about diabetes five minutes before. People think I have to bring or drink something special because they don't provide drinks for me when I come to fat family gatherings. This is a big one. And isn't it? diet drinks? There's a divide in the world. There's people who don't worry about their blood sugar who say, I don't eat that aspartame, it makes mice go crazy or whatever they say. And then there's people like I, I can't have a drink with sugar and it'll make my blood sugar go up to 400 That's that one happens constantly, doesn't it?

Jennifer Smith, CDE 30:22
It does happen and I'm, you know, I'm in a different sort of lane altogether. I don't expect somebody to have something for me for a beverage. I always bring my beverage along. If I want something outside of water, which, these days most people have bottled water or something available for people to drink. Great. I'll have that. If not, I will bring my own stuff along that I know what's in it. I know that it's not you know, whatever color such and such. That's going to turn my eyeballs green.

Scott Benner 30:54
Well, Jenny, now that I jacked up on the Wii govi I'm bringing, I'm bringing my own drinks places. Not that I would, I would never drink a sugary drink. Like I just was beyond like my I can't even tell you what it tastes like if I drink something like that.

Jennifer Smith, CDE 31:11
Did you? Did you grow up with sugary drinks? Or did you not because I I also don't prefer sugary or sweetie types of drinks. But we didn't grow up. We did even before I was diagnosed. It was not in the house because my that was just it was either milk or water. That was what

Scott Benner 31:28
we drank cut rate soda. So whatever like the you remember the Did everyone have a grocery store that the bags didn't have printing on it. So they were cheaper. And the labels were all white is like poor people grocery store, you might not have had one I had one. And that's where we used to go. So like off brand soda juice, like in, you know, giant tubs of sugary crystals that you dissolved in water. Like that's all we drank. But I as I got older, I was like, That's stupid. I'm not going to do that. And, you know, and so I changed that. I think I went to diet soda first. And then I lost my flavor for it. Like now I can't like I was in a restaurant in Atlanta visiting with my son. And they had Mexican coke. So like real cane sugar, Coca Cola, and I was like, give me one of those please. I would like to try that. It was like a 12 ounce bottle. I was halfway through it. I'm assuming that's what meth feels like. Like, holy hell. I was like, I can't keep doing this. So I just I stopped. I was like, Does anyone else want to try this? I can't completely drink this gel on my stomach. It felt weird in my head. It tasted horrible. Like as far as I could tell. But no, I grew up with it. I just changed my palate. On that one. Yeah.

Jennifer Smith, CDE 32:50
So I think the last sip of like real soda actually had was we went on a trip to Peru with some friends who were Peruvian. And they insisted we had to try this, like neon yellow soda from the bodega down the street. Like, okay, like there's no label on it. This is a total like, swig of sugar, or whatever.

Scott Benner 33:16
I guess I'll see what happens. I don't even know where this came from.

Jennifer Smith, CDE 33:19
I don't know what the flavor was. I have nothing to compare it to. But I could not believe that this was the like it was the beverage. Yeah, it was like the thing did

Scott Benner 33:30
you know what also changed my palate is that I grew up with like legit sugar. Like my example here is if you eat Fruity Pebbles, or Apple Jacks, if you're a person who's doing that right now, in real time, you are eating a terrible version of Fruity Pebbles and Apple Jacks because they were so much better in the 80s that I don't know why I have no idea why. But they changed the food that I grew up with. And so I was like this. I don't even like this anymore. It's not good anymore. It got me away from it too. I can't tell you how many here are just like my son. They they told me my son can't have cake. My daughter has dietary restrictions. This goes on and on. Here's one though. I hate that people think my child cannot eat sugary foods or junk foods even because he has type one, or that his diet somehow caused this type one. a teaching assistant at school tried to deny my eight year old non type one son ice cream because his brother has diabetes. So that lady turned to the sibling and when you people you're prone to this you can't have no ice cream. Like that's that's something

Jennifer Smith, CDE 34:40
I also am what I'm astounded about in this whole line of like discussion is how somebody who has not lived it is taking it upon themselves to make a decision for somebody who clearly is living with it. Right like where where do you get one Sorry, where do not make my decisions for me, if I want to down those five cookies, I'm gonna down the five cookies and I'm gonna figure it out and take care of it. And it's, it's not on you. It. So don't worry about me, please,

Scott Benner 35:14
this might be a dangerous part of the conversation for me. I'm fascinated by all the things people think they're qualified to do some way your life is is a dumpster fire this year. Sure about like, fascinating, you know, absolutely fascinating to me. You know, that's a different conversation. That's the conversation, Jenny, I'll have them private when we see each other. On the podcast, maybe. Let's see, people brought meals to our house after my daughter was diagnosed and asked, or told us they didn't bring desserts because they didn't want her to get worse. There you go, Oh, or to keep having diabetes. That was another thing they got. I understand their intentions were pure, but I just kept saying, Oh, she can eat anything. diabetes isn't going to go away. It's a lifelong autoimmune condition. And sometimes sugar saves her life even. She said the looks that she got made made made her feel like they were looking at her like she didn't know what she was talking about. So same thing. And she throws in something else here that has nothing to do with this topic. So I'm going to jump over the I mean, what I'm getting is that people hear constantly Oh, you're diabetic bla bla bla. But here's one, an endo ask them. I was once asked by an endo should you should should you be eating that? Like not their endo and endo in a in a social setting? Wow. What are you gonna do there? I don't know.

Jennifer Smith, CDE 36:44
Maybe that was an endo. who clearly doesn't see a lot of people with diabetes in their practice. Maybe they focus on like hormone regulation, or? I don't know, I'm trying to give them I'm trying to give them some reason for being silly. And what their what they said to that person.

Scott Benner 37:00
You want a funny one? A friend of mine told me I shouldn't eat onions because they're just pure sugar. Think that goes back to your other. Your other statement of like, how do people talk about things that they don't know about? Right? That's it. He's more fruit and vegetables. My gosh, there's so many things here, way back, a school principal asked my mom, if she could wean me off of the snacks. We, oh, that's a quote wean me off of the snacks. And she's saying these were the snacks I use to bring my blood sugar's back up when they got low.

Jennifer Smith, CDE 37:41
I'm curious how it probably isn't in the post. But like that, that sounds almost like when I was younger in school, I did have snack times that were very specific because of the type of insulin I had and the way that it worked. So they were timed. And it almost sounds like this person has had diabetes a long time and remembers that being asked, without the understanding that there was probably something in effect there that the snacks were necessary for not necessarily just for low blood sugars. But maybe that was just the way that it was because that was the way her insulin was working right? And again, we'll weaning you off. Like, when are we going to get to the point that you don't have to send the snacks to school with your child? Well, when the pancreas starts making some more insulin,

Scott Benner 38:35
where are they thinking? Well, the snacks are the problem like one or the other. It doesn't matter. It's it doesn't matter. I'm gonna skip through the your feet will fall off comments. There are a lot of them. But here's the one I was once treating my low blood sugar with Smarties, my husband's grandpa regaled me with a story about how his mother's feet at age 90 lost. She lost a toe and he said you shouldn't eat that. That's how my mom lost a toe. So by the way, that might be how his mom wants to tell. Like maybe she had untreated type two diabetes for most of her life. And like, I have no idea by the way it 90 If the worst thing that happens to be at 90 Is someone takes one of my toes. I'm gonna be like I'm killing it here. But

Jennifer Smith, CDE 39:17
I didn't need it anyway.

Scott Benner 39:19
No kidding, though, Jenny. I'm scrolling past a page of comments about people who have been told about feeds or feet. Yes. People who love to say, oh, that's diabetes on a plate, or that's diabetes in a cup, that that sort of thing. She says I hate that. And I hate it when comedians use it as a joke. This one's interesting. My family was shocked when I explained to them that we actually have more juice and candy in the house now that my child has diabetes than we did before they did. And this one's interesting. This person was told that you can't do intermittent fasting as a type one. I'm going to tell you right now that's not true. That's definitely not true. Arden's I mean listen Arden's on a, on an algorithm. So in fairness, like there's a thing trying to stop her from getting low, but it's very successful. And she is definitely a person who eats at a window. Like I would, I would bet that in a 24 hour period, Arden probably only eats for eight or 10 hours of that. And she's not running around low constantly. Right? Yeah. That's it. That is the end of the diabetes myth. For that we have diet restrictions you have anything to add to it?

Jennifer Smith, CDE 40:34
I don't think so. Not about the diet restriction stuff. Do we have more myths to deal with? Oh,

Scott Benner 40:39
my God. Yeah,

Jennifer Smith, CDE 40:40
don't we, I was gonna like we had 52 pages, there have to be more

Scott Benner 40:44
complications are inevitable that there is a cure, that there are strict rules to follow like strict do's and don'ts. And insulin pump will fix everything. These are all episodes, you will still hear coming in this that you have the bad type of diabetes. Type ones can't be overweight type twos are definitely overweight. Type Two can become type one, vice versa. i You should see. Oh, that this isn't a myth. This is just people who don't understand insulin is what you get when your blood sugar's low. Oh, yes. Insulin pumps are bad for diabetics.

Unknown Speaker 41:27
Huh? Yeah. Really?

Scott Benner 41:30
Yeah. How about that you're doing drugs?

Jennifer Smith, CDE 41:35
Yeah. I mean, that was that's a funny one. I mean, it is and it isn't, I can understand from one perspective that clearly it looks very weird. From one angle to some outsider who just doesn't know. I mean, my friends. I mean, I did not have a pump until I got married. So I was MDI for a very long time. And all of my friends, they love to hang out. Jenny's got a shoot up, it's time to eat. Like they thought it was hilarious. And I did as well. I mean, I was not bothered by that. I'm, I let a lot of things just sort of roll. I'm like, Ah, doesn't, that doesn't hurt me. So whatever. It's kind of funny. So listen, it's

Scott Benner 42:13
one of the all this falls under that category to some if you think it's funny, it's funny. Like, right. Arden does not care if you joke about diabetes. Yeah, she goes so far as to say I don't understand why people are upset by that. So it's just her personality. It doesn't bother her. But there are plenty of people in this document are like comedians that make jokes a diabetes infuriate me. So it's just it's personality. That's all. Alright. Well, I appreciate you doing this with me. Thank you very much. It was fun.

Hey, isn't it nice to have Jenny back. Thank you so much, Jenny. If you'd like to, you can hire Jenny. She works at integrated diabetes.com Thanks so much to Omni pod for sponsoring this episode of The Juicebox Podcast. Don't forget Omni pod.com forward slash juicebox Get started today with the Omni pod five, where the Omni pod dash and everything check your eligibility. Take a Test Drive. It's all there Omni pod.com forward slash juicebox. If you're looking for community, check out the Juicebox Podcast private Facebook group, which now has 40,000 members in it and adding more every day. Check it out. There's something there for you. Juicebox Podcast type one diabetes. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. Hey, everybody, better help as a sponsor of the podcast, and they're offering my listeners 10% off their first month of therapy. It's a great deal. I hope you can check it out. Better help.com forward slash juicebox. Now better help is the world's largest therapy service. That is 100%. Online. They have over 25,000 licensed and experienced therapists, they can help you with a wide range of issues. All you have to do to get started is hit my link. answer a few questions about your needs and preferences and therapy. And that way better help will be able to match you with the right therapist from their network. Better help.com forward slash juicebox you're gonna get the same professionalism and quality as you expect from in office therapy. And if for any reason your therapist isn't right for you, you can switch to a new one at no additional charge. Do therapy on your terms, text chat, phone video call and you can even message your therapist at any time and then schedule a live session when it's more convenient. So if you're looking for someone to talk to check out better help

#955 Hindsight is 20/20

Sami has type 1 diabetes, is unsighted and has some other issues.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello Friends Hello friends Hello friends Hello Hello Hello Hello friends and what? Hello friends and welcome to episode nine I don't like the way that sounds Hello friends Hello Friends Friends Hello people of Earth Hello friends and welcome to episode 955 of no no not okay you guys hearing that? Am I gonna leave all this? I'm? Probably not hold on all right Hello friends and welcome to episode 955 of the Juicebox Podcast nailed it

Sam is with me today she has type one diabetes and is blind. She also has some other issues she's had a transplant. There's a lot going on here. This is a very, very, very, very, very interesting and honest interview. While you're listening to it. Please remember that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin, drink a G one.com forward slash juice box that's my link to get started with a G one. When you use the link you'll get five free travel packs in a year supply of vitamin D with your first order. My cozy Earth offer code now gets you 40% off everything at cozy earth.com that offer code juice box. I'm talking about super comfortable luxurious bedding, clothing and towels. Cozy earth.com use the offer code juice box at checkout to save 40% off your entire order. All right, I hope you enjoy Sammy as much as I did. I'll see you on the other side

today's episode of The Juicebox Podcast is sponsored by Dexcom Dexcom of course makes the Dexcom G six and Dexcom G seven continuous glucose monitors dexcom.com forward slash Juicebox Podcast is also sponsored by touched by type one, they've got their big event coming up soon. I'm going to be there speaking you should come touched by type one.org. The event is free and open to everybody whose lives are touched by type one diabetes.

Sami 2:41
Hi, I'm Sammy, and I am a diabetic. who is blind from type one diabetes.

Scott Benner 2:51
Okay, Sammy, you were how old were you got type 117 How old are you now? 4817 48. Okay. And was there other type one in your family or other autoimmune diseases?

Sami 3:05
No, no one on either side. It was it was new. I didn't even in high school. I didn't I never even heard of the word diabetes. Never heard of the disease. So it was all new to me and my family.

Scott Benner 3:20
And just 17 years old bang, here it is. That's 31 years ago. Is that right? No? Yeah, no. Okay, so in the early 90s,

Sami 3:30
yep, 90 to the end of my junior year. So this is

Scott Benner 3:35
right around the time. People are transitioning to faster insulins away from maybe starting to get away from regular an MPH did you start? What did you start with?

Sami 3:52
I just remember it was a violent syringe. I honestly don't remember what I started with. At that time I was sighted. And over a two week period is when I kind of experienced the symptoms of weight loss and having to urinate all the time. Dry mouth. I didn't really think anything of it. My brother had mentioned something and so went to the doctor and tested my blood sugar and is over 600

Scott Benner 4:24
Wow, your brother mentioned that you look like you lost weight.

Sami 4:27
Yeah, yeah.

Scott Benner 4:32
Interesting age. So you're 17 does this lead to your parents saying sent me we're gonna help you with this? Or does it lead them to say, well, this is your thing. You have to take care of it or how does that go?

Sami 4:46
Like I said it was it was new to all of us. So we were learning. We were learning together. And at that time back in the 90s I kind of had a older doctor who was kind of by the book we're no sugar, you know? None of that good stuff. And I'm like, I'm a teenager, I live off of sugar. I live off a mountain dew and Snickers. And so that was a big, a big step to try to change. But I didn't I just thought the doctor was thinking no not being I'm a teenager, nothing's gonna happen to me. I'm invincible. I know better.

Scott Benner 5:20
So, so you're met with change your diet? And do you say no, I'm not gonna do that.

Sami 5:26
No, I didn't. I didn't say because I was still in that kind of fear mode. What is happening to me? And don't know what, what it's going to bring to my future, you know? So I just kind of did it on the slide. Underneath, kind of underneath my parents knows when they were trying to help me eat right and stuff. But when you're at school vending machines, that's was my that was my go to lunch.

Scott Benner 5:57
How were you doing the insulin? Was it? Do you remember? were you shooting it twice a day? Were you shooting it at meals? How were you? How was the management setup?

Sami 6:06
It was supposed to be with meals. But oftentimes I skipped because I was in between the in between classes and stuff. Didn't check my blood sugar at my locker trying to be really discreet. And so oftentimes, I just skipped it and kind of guessed on what I ate and what my blood sugar was, and kind of went from there. And over 12 years, that kind of habit. lead to losing my sight.

Scott Benner 6:34
Well, how long did that take to happen?

Sami 6:40
Happening Oh, four. So there was a more he was gradually over eight months, I noticed. Ironically, I was working at a deaf and blind school. And I woke up one morning and my eyes were swollen. And my vision was blurry. And it took half a day for my vision to return. So then I decided to go to see an eye doctor. And they said, My, both my retinas were detaching, and I would need surgery. And then at that time, I was working part time, no insurance. And back in the 90s. If you didn't do college or anything, you weren't under your parent's insurance. So after 18 I was on my own. So no insurance, paying out of pocket for meds when I really couldn't afford using syringes, twice, sometimes three times just to save money. So it was a lot, a lot of mistakes, for sure.

Scott Benner 7:40
So that onset of that issue is about 12 years after your diagnosis. Yeah, okay. And for those 12 years, I want to try to give people a picture and by the way, you're very kind to come on and talk about all this. What what did you not do for 12 years? That I think that's what I want to know about like, and were you not doing it? Because you didn't know better? Or you're not doing it because you just thought oh, it's not going to happen to me like what was your whole mindset around it?

Sami 8:14
Like it's going to interfere with my mind because my sports again, nothing's going to happen to me, you know, going into my early 20s very active in sports and taking the time like in between games, especially on the weekends competitive softball there was no you know, you didn't really have time so just skipped like I said skipped eight meals skipped my insulin sugar was skyrocketing high would take it just for their blood sugar the correction and then it would drop with the sports so it was a it was a roller coaster up and down all the time. But more so on the high side than the low side. We're talking three hundreds for hundreds back then I would wouldn't feel sick like some people do. This more of the dry mouth that I would experience and everyday go yep, I no time to try to save on test strips because those are expensive too. So guessing what my blood sugar was based off how I felt. So a lot of them misbehaving I guess I'm like, again, I couldn't afford to go to the doctor. So I try to do everything on my own. And at that time, I'm still new to it. So a lot a lot of guessing of what I should do a lot of bad guessing.

Scott Benner 9:40
Do you recall getting information from doctors that was valuable that you were ignoring or, or misunderstanding or was it not even coming?

Sami 9:51
It was probably there. I mean, back then there was no internet nothing. So it was it was paper and I'm like I don't have time to sit here and read this you know but it wasn't. I don't even think I even met with a nutritionist back then too. It was just strictly the doctor. And like I said, she was kind of older and old fashion. And I didn't like her. My parents didn't like her. But that's, that's who I had as a doctor. So, again, trying to avoid that going to see her was my biggest thing. And then she retired and got a new doctor, which was younger, who I liked a lot. But again, still couldn't afford the appointments, couldn't afford the insulin, the syringes, the test strips, so a lot of

Scott Benner 10:36
your parents school, your parents couldn't afford to help you either.

Sami 10:39
No one had four brothers shows. It was tight.

Scott Benner 10:44
Was there ever any conversation about what the consequence would be of that?

Sami 10:50
Um, probably, I don't remember. But probably I know, over the years, doctors who have kind of warned me and like, Hey, you don't know nothing. You know, this is my health my life. I'm okay. But I did notice a few years and before I lost my vision, and Oh, for that my vision would get blurry. And I just thought, Well, I'm working nights. I'm tired. My eyes are tired. But I never got my honest because I couldn't afford it either. So there were signs that I just ignored.

Scott Benner 11:23
Now I understand. What does it mean that you lost your sight? But what is the level of are you citation?

Sami 11:31
There's no vision, nothing whatsoever.

Scott Benner 11:34
Okay, so things are like, as you and I are talking right now? How do you describe what you what you take in? Is it black blackness?

Sami 11:44
Yeah, like, if you were, if you were in a dark room, that's like you don't see anything? Or if you close your eyes, there's nothing there.

Scott Benner 11:50
Right? Is it helpful in your day to day life that you recited for a while? Or does it not matter?

Sami 12:01
It's yeah, I definitely miss it. I miss my brothers growing up. And I have nephews that I've never seen, or last time I seen them was two years old. And they're 28 and 23. Now, so that's the last image I have, in my mind is last time I saw them, my two younger brothers were elementary and middle school. So there's a lot of things that I've, I miss, for sure I miss driving. For sure. Uber and Lyft is great, but it's expensive. And so not being able to get in the car and go whenever I want to, wherever I want to. I simply I, I really miss. But on the flip side of that is, I've met so many nice people as a blind person. And I tell people that I've been more blessed as a blind person than I was as a sighted person. And kind of what I mean by that is, as for me as a sighted person, more superficial than those who maybe were prettier than me, or more athletic than me just to try to fit in. And now I don't I don't you know, I don't see skin color. And I see personality, I see what comes from the heart. And that makes a big difference as to who is in my life now. And before?

Scott Benner 13:34
What our day to day, day to day. Are there things that you can accomplish that you miss? Or do you just adapt?

Sami 13:41
You adapt. There's lots of technology out there, like the Apple has what's called VoiceOver. And Apple specifically created that for blind and visually blind and visually impaired people. So that's been helpful. I've been able to use a cell phone, my laptop has what's called JAWS, which is Job Access with speech. So it's what's called a screen reader so it can read it, what's on my screen, anything that I type, same thing with the phone. So that's been helpful. There's talking looking meters, there's talking skills, just just a lot of technology out there that I didn't really have when I first lost my vision. And now it's like, you know, I don't need to learn braille, but I couldn't read it because I had neuropathy and in my hands and my fingertips and neuropathy in my feet. So Braille was really no use to me. So the technology has been, for me a good blessing because I'm able to do things on my own. It's very rare that I asked for help. Whether it's finding something or do See my phone's acting up and I can't scan the barcode to get the nutritional information for my carbs and serving size and stuff like that. That's when I rely on family and friends. But for the most part, I can live on my own.

Scott Benner 15:16
What do you think you're a one sees where for those 12 years,

Sami 15:21
double digits for sure. In my early 20s, as a type one diabetic, I was drinking a 12 pack of Mountain Dew a day. And now I just drink strictly water, a more plant based than anything. And that's helped my blood sugar's quite a bit, especially with say, chronic kidney disease, which led to end stage renal disease, which now leads to dialysis. So that's coming from uncontrolled diabetes.

Scott Benner 15:54
Have you How long have you been on dialysis?

Sami 15:57
Couple months,

Scott Benner 15:59
couple months? And what what's the prognosis? What are you hoping to have happen? Are you waiting for a transplant?

Sami 16:05
Yeah, my older brother is a match. I had my first transplant was in oh six, my dad gave me one of his kidneys. In oh seven, I had a pancreas transplant, which was great, because no more No more diabetes. That field unexpectedly, two and a half years later. So in 2010, I believe back to being a type one diabetic 2013 had another pancreas transplant, which lasted five years. And that failed unexpectedly as well. So back to being a diabetic again. And now I am into the July 10, I will go to one of the hospitals where I'm at and get evaluated for a transplant, my older brother is a match. So that's good. I don't have to wait years to find somebody, especially with three transplants, the antibodies are are harder to match. And so But thankfully, he's he's a match. And then once he does his evaluation, I do my evaluation, we get our testing completed, we can put something on the calendar for a transplant.

Scott Benner 17:20
Can you tell me what it's like to approach a person and ask them a question like that?

Sami 17:25
Oh, hey, family, does anybody want to donate one of your kidneys? My older, I have four brothers. My two younger brothers have kids, I didn't want to approach them. My second brother is single. And he he wanted to donate. But I know he's little he's nervous to do so my older brother, he's got two older sons in their 20s. So he felt comfortable enough to get tested.

Scott Benner 18:02
It seems like a really difficult thing to ask somebody.

Sami 18:06
It is. There's a lot I mean, the typical risk involved, and but there's no even though my older brother's a match, there's no guarantee that my body's gonna accept it, even with the rejection that so there's that chance of going through this whole process going through the surgery, and then my body says no, no, thank you. And then it's dialysis for the rest of my life.

Scott Benner 18:30
Yeah. So any chance to grab another pancreas while they're in there? Or?

Sami 18:34
No, they say because it has to be on the right side. And so the the vessels, arteries that are used or have been used already twice, I should say three times because I still have my original pancreas for the, for the digestive enzymes. And the transplanted pancreas is more for the insulin. So that's, I was hoping but that's out of the question. So the kidney Can is transplanted in the front. Kind of Viva hip bones. The first one from my dad is on the right side. So for my brother's gonna be the left side. So this is probably going to be the final one. And I'm hoping it'll last

Scott Benner 19:15
yeah, I hope so too. You're in a unique position to answer a question. So you've already said, you know, it's not going to happen to me. I'm young, like that kind of thing. Like that's how everybody thinks. And when they're faced with the idea of what could happen. Everybody just they dismiss it somehow, right? They're like, Oh, that won't happen. Bah, bah, bah, but when it actually happens, and there's no rewind button. Can you explain how that feels internally?

Sami 19:54
loss here My life is over. I, I, when my when I was losing my vision over the, the months, both of my retinas had detached by then my optic nerves were dead. And little vessels were growing out to try to get oxygen. But the high doctor that was going to was, was lasering them to shut that down. And every time he did that my vision got worse. So knowing that from full vision, and it gets smaller and smaller, kind of like tunnel vision, and then you wake up one day, and there's nothing, absolutely nothing is terrifying. How am I gonna live my life? Am I gonna have to live at home forever? You know, I mean, when I worked at the deaf and blind school, I had seen the deaf students travel quite a bit, you know, I'm very way younger than I was, and like, they can do it. But you know, now I'm in my 20s going to 30 How is it even possible for me. But you learn, like, you learn to adapt. And it's always easier, you're always kind of in survival mode, because it is a world of the sighted. So it's hard to thrive. In a society that kind of looks down on people with disabilities, you're always out there trying to prove yourself. And it's difficult to have been looked at as a liability instead of asset because people with type with disabilities tend to work harder, because they know how hard it is to get a job and wants to get a job. They want to stick with it. So they tend to work harder, and are more dedicated and able bodied people

Scott Benner 21:48
was there. Was there self reflection as the vision was waning? Like, did you say, Oh, my God would like do I can't believe I did. This was did you? But did any of that happen? And am I my my follow up? Question is that is? Are you the same person? Now you were when you were 27? Or are you a completely different person?

Sami 22:11
Yes, self reflection, even now self reflection, I mean, going on 19 years later, still self reflection, self reflection all the time. Because I'm missing out on stuff. My family is so used to me moving around the house. Without my without my white cane that they tend to forget that I'm flying. And same thing with friends. So hey, it's over there, you know, it's over there, while whereas over there. So stuff like that really kind of hurts in a way that they're, I mean, in a way, it's it's nice that they're forgetting that I'm blind, that they're not treating me any differently. But on the other hand, it's like, you know, you can't, you can't put a sharp knife in the sink. And that in that tells me you know, a little stuff like that. Or if you're gonna move stuff, taking the heads up, I've broken my toes. From objects being in, in the walkway, you know, my path. So forgetting to tell me and I go off to too late another broken toe. But I'd say the second part of that for sure. I've am a different person, for sure. In so in good ways and bad ways. And I have a lot of irritation, get irritable, quite a bit of people trying to be my voice and trying to do things that they think I need or want to do. And a lot of times, we may not need help or want help. So the best thing is to ask instead of assume. So you try. I mean, I try to be patient. It's always a teaching lesson and a learning lesson for others as well as tech because a lot of them a lot of people have never interacted with a person with a disability. So I tried to take that moment to teach and have learned something new instead of kind of being Oh, you're such a jerk. You're so ignorant, you know? I mean, it might go through my mind. Hey, if I put on the Uber app, hey, I'm blind need assistance. And this, you know, they pull up and don't say anything to me. And I'm like, Asus, my car is not my car. So thank you.

Scott Benner 24:38
Yeah, no, you initiate and it's not an Uber, but it's somebody with ill intentions. They'll be like, Yeah, this is the Uber good end.

Sami 24:45
Yeah, yeah. And I've done that where I've tried to get in a different car because I thought it was the Uber or Lyft and it's not. And it's not because the driver doesn't say anything or they don't hop on the car and say Hey, can you send me you know, and so on. stuff like that. It's kind of frustrating, for sure. But do you try to take an Australian try to show patients for sure. Like I said, a lot of people, they see people with disabilities, but never have really interacted with them. And we're just the same as everybody else. We bleed red, just like you we have a heartbeat. We have a mind we have a voice. But we're not treated like that. Which is,

Scott Benner 25:25
which is really hard. I can't imagine honestly, do you? Do you ever have like, one to one feelings? Like, I traded my site for Mountain Dew? Like, like, do you really mean like, you ever think of it that way? Like, well, I did these things. And somebody told me not to, but I did it anyway, I was sure I was gonna be okay, I was really wrong. And I don't even have nothing to do. And I mean, it's not like you. It's not like you ended up with something for your trouble that was positive. And I guess I'm asking you, Sammy, because it just in general, like about food, like, Forget diabetes for a second and your blindness and all that, like, every day people make decisions like that. And we say it, but I don't think anybody thinks that, like, you know, a cigarette takes a certain amount of moments off your life, a decision, you know, blah, blah, kills a brain cell, like that kind of thing. Like I'm gonna run into something I play football and you know, blah, blah, blah. Like there's, there's trade offs you're making, and you're paying with the end of your life. And, and I just don't think that anybody sees it that way. And I'm, I am almost desperately asking you to put into words like what what would you not give to go back?

Go to your browser type in touched by type one.org. The one is the numeral one. When you get there, you can check around look at the site, it's delightful. Or go right to that Programs tab and see what touched by type one does for people with type one diabetes, after you've poked around a little bit, go right to that annual conference. That's where you're gonna see that on September 16 2023. I Scott Well, I don't think my name is there yet. But trust me, I'll be there. I am going to be at touched by type ones annual conference, giving a number of different talks. And I hope you can be there with me. Touched by type one.org. registration opens on August 1, we're getting close. But go check out the venue and and see if you can't get your ducks in a row to come. Come see me. We'll say hi, take some pictures, smile or smile. You don't have to if you don't want to. You want to try to look serious in the photo. It's fine with me. But I'm going to smile touched by type one.org. Today's podcast is sponsored also by Dexcom dexcom.com. Forward slash juicebox. I just typed it in. Oh, look at this. They've updated my page. It's very lovely and colorful, cool people wearing Dexcom G sevens. The new Dexcom G seven it says the most accurate CGM system manage diabetes confidently with a powerfully simple Dexcom G seven that could be you. I won't read the site to you when you get there. But once you get there and read past those words, you're gonna see a button that says Get Started. You can click on that or you can scroll down and look a little bit at that and look more at the bit of a bit of them. Well, that was technical. Let me start over again. You can click on get started and fill out the data and what's wrong with me feel like I hit my head dexcom.com forward slash juice box click on get started I'm lost what am I am I have Hold on Alright, I got this dexcom.com forward slash use box click on get started and you'll be taken to and you'll be taken and you'll be taken yeah taken and you'll be the mother of click on get started and you'll get taken down to the new patient form where you can get started with the Dexcom CGM fill out a little bit of information Dexcom is gonna get right back to you. But you can also look around the page and learn more. Learn more about the connected pumps that work with Dexcom G six. You can learn about getting started with Dexcom G seven. Take a look at the receivers how it might work with your Apple Watch what the device looks like on different people. And you can read about how you can share your data with up to 10 followers there's so much information on this page. Don't Don't worry about the fact that I'm something seems to be wrong with me. The page Just terrific g7 For Medicare costs and coverage information, how it works an overview of the product Dexcom G six, everything is that my link dexcom.com forward slash juicebox. I am now going to go make sure that I'm okay. Because I think it's possible I've banged my head and I'm not aware of it. Anyway, I'm going to leave all that in, you should know that there are times where I just I can't talk. Today was one of those times don't take that out on Dexcom though. dexcom.com forward slash juicebox touched by type one.org links in the show notes, links at juicebox podcast.com. Oh, look at that. Now I'm rolling now it's over, right.

Sami 30:47
I mean, I'd give up everything to have. So even even if it's for one day, really, I think I think about that a lot of there are times where I give up my life just just to have a mission for 24 hours just to see my family just to see my nephews.

Scott Benner 31:06
No, I mean, that's what I appreciate you saying that.

Sami 31:11
It's, it's to me, it's, I know it's going to be for because I do my 2004 I lost my vision and over the years, because my eyes are not getting oxygen, they started to change color. Um, I got cataracts and glaucoma and was treated for that, but so that my, the whites of my eyes kind of turned yellowish, and my pupils were constantly dilated, and they started to shrink. So I can feel people staring at my eyes all the time. So I made the decision to get prosthetics in 2012. Okay. And now that you people can't, people don't even know the difference. They don't know that I have prosthetics unless I tell them or unless one of my eyes is looking the other way. You know, sometimes that happens when I rub my eyes and forget about it. But other than that, you know, back in the day, I guess, kind of like marble types where you they would put it in the eye socket. So what they did for mine is they put like a tiny, a tiny rubber ball in my eyes, I can only stretch the muscle over it. And then the doctor hand handmade my eyes and hand painted my eyes. Which is kind of cool. Because I could choose a color I used to have blue and now I have gray. So it's kind of cool that I could change my colors with with a Medicare, I can change my eyes every five years so I can get a new color. Every five years, I've had my original blue, I've had green and now I have gray. But you know, that moment of there goes my eyes, there's no chance of in the future. Being able to see again,

Scott Benner 33:09
yeah, it feels so similar to when my son left for college. And I told him I'm like, there just a couple of things in life, you can't. If you do them, you can't go backwards. And that they'll that they'll stay with you forever. And and you're not going to know that those things aren't going to be as impactful as they are. So I listed them out as I saw them for him. And it's funny, because as you're talking, I almost picture you in a jail cell because you murdered somebody sitting there every day having to think about it and and saying I wouldn't do this again. Like if you could let me do this again, I would do it differently.

Sami 33:52
We put it into words. That's exactly what it feels like.

Scott Benner 33:56
So sorry. I mean, not not especially but because even when you were diagnosed, like they really weren't giving great advice at that point. And the technology was specious. And you know, and you're just being told don't eat sugar that's not valuable. Like you know, just to tell somebody hey, just change everything, you know, you just had this diagnosis. You're 17 Now just go ahead and change everything about your life on top of that. And you have one year to figure it out, by the way before you lose your insurance with your parents. I mean, you weren't you weren't given a level playing field that's for certain you know, I mean, I don't see this as your fault like you and I hope that's clear. I don't I don't see it as fault I just see it as very just bad luck circumstances. But at the same time I don't know how you could possibly not put it on yourself internally I think I would I guess is what I'm so yeah, for sure.

Sami 34:51
I blame myself all the time thirds in my vision. It's my fault for not taking care of my blood sugar's for not doing the insulin like I should have found that listening to it. Yeah, there's always a blame. It's it's a heavyweight that I carry on my shoulders and I don't think will ever be removed.

Scott Benner 35:08
Yeah, but and isn't isn't the gift we're gonna have to say fault like it. Yeah, I mean, okay letter the law you did it right. But I mean, did you really know you were doing it while you were doing I mean honestly, it's not like pulling the trigger on a gun like I if I point a gun at you and I pull the trigger, I have an expectation that the person I shoot is gonna die. You didn't think that's what you were doing to yourself though?

Sami 35:31
No, absolutely not. I figured, well, you know, as long as I can get my sugar's back down, everything is going to be okay. You know, I can make up for it. There was. And the reason I had reached out because there was a podcast, with a mother who had talked about her teenage son, who kind of was doing the same thing that I did back then, of catching up kind of catching up. And that's what made me want to come on the podcast. And say, I, you know, I was in your shoes that you are in now, don't continue down that path. Because look what's going to happen? Yeah. And it's, it's, yeah, and like I said, it's fearful, it's terrifying, to be able to go from 2020 vision to absolutely zero vision.

Scott Benner 36:19
And at the level of at the level that you are managing at for those 12 years. I think that's about what I hear from people because there are other people who have come on with other kidney issues or sight issues, etc. This like 10 year thing, like 1012 years like, of really not paying attention and not doing the things that you need to do. It seems to be about as long as your body can take it. You know, for a lot of people. Were you thought you were taking some insulin, but what were you doing like running background insulin, not really injecting for food all the time, stuff like that.

Sami 36:56
It was more just for food and not for correction. Because again, the test strips didn't always test to see what my sugars were. So okay, so I didn't really understand the whole carb issue as well. So I'm like, Oh, well, I'm gonna guess I know, it's one over six, one for every six. But I'm not sure what these carbs are because I didn't look at the label. They really quite still understand that because again, no nutritionist no education. Just whatever the doctor said, Here, you Here you go. This is what you're supposed to do. I'm like, Okay, well, I

Scott Benner 37:34
don't imagine that even people right now, like 2023, somebody who's 1520 30 and 2530 years old, even when we could believe that but it's true. Like when we were growing up, Sammy, when we were growing up, no one discussed that any food was better or worse for you than any other food. That was not a consideration. Like soda was like, soda was a thing from like Happy Days, like from the 50s like a treat that happened at a diner for example. And it was and it was tasty and different than soda. Like, you know, like no one. No one thought about it as a bad thing. My parents drank copious amounts of coffee, no one said, Hey, you probably shouldn't drink 10 pots of coffee a day, my dad smoked two and three packs of cigarettes a day. No one ever said to him like, hey, that's gonna kill you until time went forward. And, and society started talking about it differently. And that's the first time my dad was like, oh, people say this is gonna kill me. Like my dad would go into coughing fits. That were, I mean, maybe beyond description. And it ended and everybody was just like, Ha ha like that happens to Ben. Like the only means really? Nobody if you did that. Now, if you coughed in public the way my father coughed 10 times a day, someone would have taken you to a hospital. And back then it just wasn't like that. And diabetes was was that personified? Like, like, I wonder if that doctor didn't wasn't saying to you look, do this stuff. Don't eat sugar. Did they ever tell you you're not gonna live long?

Sami 39:21
I don't remember. Yeah, I

Scott Benner 39:23
don't. It's right on the cusp of when it started getting think thought about differently. I mean, there are people older than you are not older than you but who have had diabetes longer than you who have who I've I've spoken to were told, just like, I had a woman told leave college, it's not going to be worth it. You're not going to live that long anyway. And I mean, when that's the expectation, then a How are you supposed to live like that's not going to happen and be What are you expecting from doctors, you think you're gonna die anyway? You know, and you were just on that cusp, right there of when we were starting to figure it out. little bit. It's so terrible. I am very sorry. I know that's not. I don't know if that's something that you care to hear or not. But I mean, it does just seem to me that your situation, even if you're going to blame yourself for it, like, it just seems random to me.

Sami 40:17
Yeah, yeah. Just the information that I know that I mean, it's, again, diabetes is is a moving target. It doesn't stay still, you know, you could, for me, I've had lots of changes, even within days of the doctor setting my correction scale and my carb ratio. I'm like, Okay, this is not working. I'm having month lows. I'm having lots of highs. It's, it's, it's constant. You know, it's constantly moving. And sometimes it's frustrating, because my mind is set on this dose, but Oh, darn it, I forgot I have to do this dose now. And in that sense, it's kind of frustrating because it's always changing. And now we have this new medicine. Oh, now we have this and this Miss. And it's like, Well, which one is which one is best? For me? I've been on this Novolog for a long time, that seems to work.

Scott Benner 41:08
A different one or something like that.

Sami 41:10
Yeah. And now Now I take three insolence. So I have my Nov along with the meals and then I take NPH in the morning with my transplant meds because I take prednisone every day. And no other doctor has ever mentioned the how prednisone could affect my sugars ever. To this recent doctor,

Scott Benner 41:32
that fascinating. So you're taking a medication that you have to take that's driving and holding your blood sugar up. And no one's ever put those two and two together and said, hey, you know what, why don't we go back, reach back to this mph stuff. And so you have a nice background of of, you know, trying to push down on this number.

Sami 41:50
isn't crazy.

Scott Benner 41:52
I mean, I wish I have to tell you something I wish it was and I don't think it is. Yeah, wow. That's something else. What is how are your outcomes? Now? Where's your agency? What's your variability? Like? What are your goals?

Sami 42:10
Last time I checked, I believe my A once he was a 6.9 which came down from last year I believe was 11. So I focused more on especially going into end stage renal disease of hey, I really need to pay attention. And there are days where I'm like, You know what, I don't care. I really don't care. Because of dialysis. It just makes you weary all the time. You're so tired all the time that I don't I don't feel like eating but I know I have to eat I know I have to take my insulin. I know I have to take my transplant meds and that's what kind of keeps me me going is these half twos. I wish they weren't but they are.

Scott Benner 42:57
Can I Can I ask a question? Did the blindness not move you on the diabetes stuff? Was it the was it the kidney stuff that got you to do differently? Or it was like the kidney stuff? Yeah. Wow. Can you walk me through that a little bit? How did losing your sight not kick you into gear?

Sami 43:18
Oh four, I had to I had to. I had to move back with my parents again. Because I was working at deaf and blind school couldn't drive anymore. So they had to come drive an hour and a half to come pick me up and all of my stuff move back home. I don't know. I mean, it's, it's when I lost my sight. I was so fearful of getting out of bed. I slept for 20 hours a day, my parents had to force me to get up to eat to take my insulin. They did all of that for me. Until about six years. deep dark depression. My life is over. I can't live as a blind person. Of course thoughts of of suicide go through my head. But then I'm like, you know, it goes kids. And this is what kind of changed the tide of working at the school. There was a student who was blind and he was on the wrestling team. And I was coaching assistant coach to the basketball team. And I would just watch him travel the halls of the gym, out on the campus back to the dorms all by himself. Like oh, she can do it and I know he's yet a lot younger than me. I should be able to do that too. And before that I only had one interaction with a student who was blind in middle school, he had a locker next to mine and he would travel this, the school hallways and so those two memories came back to me like, if they can do it, I can, I can definitely do it. So it took a lot of training, I went to, like a blind Training Center to refresh my memory of how to cook how to clean with different techniques and methods. But yeah, I mean, I don't know what I mean, no blindness was, was already going to be permanent. And there's nothing I could do to change it. But then with the chronic kidney disease, and we'll even know why that struck more of a chord with me. Because maybe, maybe, because I could I could lose my life with the kidney disease versus blindness.

Scott Benner 45:41
Is that also a view? Because you've worked through the Depression part of it too?

Sami 45:46
Could be I mean, there's still some depression there, of course, but it's not as as drastic as it was back in 2004. To 2010.

Scott Benner 45:56
Back then, did you have a plan?

Sami 45:59
Back? No, no, I was just going to be in bed the rest of my life, what my parents do everything, I was afraid to take my dishes to the sink to walk 10 steps from the table to the sink, I was afraid to do that, that I dropped. And so I didn't do that. I didn't do that for the longest time. And then I saw how somebody had to be home with me all the time. Because again, violence syringe, so they had to measure up my insulin. So they would kind of take turns between their jobs and stuff. Someone would be home with me all the time. I just, I just kind of felt inhibited in their voice of how exhausted they were.

Scott Benner 46:40
That's the second time you said that. So the first time you said that you could feel people looking at your eyes. And I wanted to ask him about that is it? Is it like, you know, when you're in a room, you can feel there's another person there. But you don't, you don't have to see them to know like, it's almost like the air pressure is different, or the pauses are different or something is that there's nothing you're reading when you're like, I know they're looking at my eyes right now.

Sami 47:05
Yes, you can kind of feel that, you know, sometimes when you feel someone staring at you, you know, you know, someone's looking at you. And that's kind of how it is. Again, there's an everybody has an aura so it can feel that. And like you said that the pressure in the room changes. Like when I'm walking, I can feel like the tree overhead like the branches overhead. I can feel that. I can feel if there's a car next to me, I don't know how big it is. But I know there's something there. And

Scott Benner 47:37
so the same thing with when you're living alone with your parents like you feel that is it. Can you feel that they're burdened by this that that they wish it wasn't happening? I'm sure nobody said it to you. But did you have that feeling?

Sami 47:53
Yeah, their energy had changed for sure. That's what I mean. Yeah, yeah. Yeah. Still kind of that. That way, too. They're older now. They're in their 70s. And that's kind of where I'm helping to take care of them now. My mom is deaf and my dad's hard of hearing. So thankfully, growing up, I knew sign language. If I had lost my vision without knowing sign language that would have been difficult to communicate with my mom, but we make it work. We do tactile signing, where she can send it to my hands or use my body as part of the sign and I signed to her. Yeah, just anything. So we we make it work.

Scott Benner 48:36
Is there any lightheartedness about it at all? Anyone ever said, Hey, what a pair we make or something like that?

Sami 48:42
Oh, yeah, yeah. When my mom and I are out shopping, she's my eyes and her ears and people come up and comment on that all the time. Oh, you guys would make a great pair. Yeah,

Scott Benner 48:54
how about? Again, this happened to you. 2029 years old. Am I right about that? Yeah. Okay. Were you in a relationship at that point? had had you had relationships prior?

Sami 49:11
Nope. Nope. Never, never. I mean, I've dated but never been in a relationship. And I feel too, and I was back then I was all about sports. That was my that was my thing. I don't have time. I don't have time to date men. I don't have time. You know, it was all about me and my sports. And then now losing my vision outdated, but a lot of times I find and I've done almost don't tell my pants icon on those stadiums. Those dating sites. And they're not always accessible, but I found a way to make them work like Bumble. And I start talking with a guy and in my profile, I would say I'm blind, you know, but they'd still reach out to me and And then when I bring it up again, they just think ghost. It's like really?

Scott Benner 50:04
Like they didn't see it at first. And then they were like, oh, geez, yeah. Or some

Sami 50:08
of them are like, hey, yeah, it's great. I'm cool with that. But it's like, Hey, you want to meet and then they're gone.

Scott Benner 50:15
Sammy, you just said, Don't tell my parents like you were 15. That was really interesting. They're not gonna listen to this podcast on their hands. Yeah, I mean, they're a part of hearing and deaf. They're not listening to the podcast, for sure. Yeah. Are you okay? With like, humor around about this stuff like it? So if you're with a person you trust you hear about or, you know, well, it's talked about make no differently than, I don't know, break balls with a friend about something.

Sami 50:46
Yeah. And I A lot of times, I use my blindness as an icebreaker. Because a lot of people are like, I don't know how to act around her. I don't know how to treat her. And so I'll use my blindness as an icebreaker and, and I'll laugh about and be like, Okay, well, that's cool. You know, she's cool about it. I'm cool about it.

Scott Benner 51:05
Yeah. I thought for sure. When you told me when you're on Bumble, and they found out I was blind, they still tried to send you a picture. That was exactly where I thought guys are so wanting to do that, even if they don't even think you can say it.

Sami 51:23
Well, I want to say it probably I want to say one guy did and I'm like, really? I think I got to the point of texting. And so he had said he's like, send me pictures of your wife. How am I supposed to do that?

Scott Benner 51:40
You should have you should have sent a picture of half your face and the armbar. Hilarious. But, but he still did it. I still was like, here. Let me show you.

Sami 51:51
Yeah. And I'm like, Okay, well, that doesn't help. Were fascinating

Scott Benner 51:55
people, men generally. That really made my point. And by the way, most people heard me say that and think oh my god, Scott, You're ridiculous. But see, it happened. I know people. Okay, so. Do you ever Can Can I ask you a really uncomfortable question. Ever? Consider getting like, I don't know what it's called. I guess it's a prostitute, right? If you're like, Yeah, have you ever thought of doing that?

Sami 52:30
As long as I don't share this with my family. Yes, I have. But it makes me fearful because being taken advantage of.

Scott Benner 52:39
Yeah, you need a third party. You gotta have a real good friend. Be your your reverse pimp somehow, like somebody's gonna be there for you for safety.

Sami 52:49
Yeah, I've talked with one of my good friends. And she's helped me with stuff like that before, but it's always the it's always the vulnerability that stops me.

Scott Benner 53:00
Sure. No, I would have a hard time imagining how you could get over it. But I still think you would think about it.

Sami 53:08
Oh, yeah, I mean, even even going out for a walk. You know, I really can't enjoy the sun. I can't enjoy hearing the birds. I have to pay attention to where I'm going what's around me and all the noises around me to make sure that I stay safe.

Scott Benner 53:23
Yeah, because in a world where a guy would send a pic to a blind woman on Bumble you need to watch out for yourself. Yes, yeah. 100% No. 1,000,000% like I definitely get that. Oh my gosh, yeah. It Do you have any other autoimmune issues? No one else has ever come up.

Sami 53:42
No, thyroid has always been normal. And I've heard you talk about that. My mom and her mom has had thyroid issues, but thankfully mine has always been normal and I haven't had any issues with that

Scott Benner 53:52
suit. No celiac or anything like that digestion stuff.

Sami 53:56
I ended up getting gastroparesis in 2010 I had no idea what it was lots of vomiting after meals and stuff and then finally diagnosed so I was on medication for the longest time. And and I went to a chiropractor because I was having back issues and after a couple adjustments my gastroparesis went away. Relative to not I could do not Yep.

Scott Benner 54:24
Listen, I don't know if there's any cause there but good for you and congratulations.

Sami 54:30
But now with dialysis, it's kind of returned back. Yes. So that's kind of it's it's it's frustrating.

Scott Benner 54:38
Are you going to a dialysis center or are they doing it at home?

Sami 54:41
Center? That's for me it's it's more conducive to do a center than try to figure out do

Scott Benner 54:48
I kind of imagined but I just wanted to check and are you wiped out afterwards? Does it kick your ass?

Sami 54:55
Yes, it does. Even on my off days. It's like I'm recuperating, right It's the weariness that is the biggest thing. The first week. It was awful leg cramps all the time. Hard to break shortness of breath, heart palpitations, but I guess that's kind of normal when you first started and then after a while your body gets used to it. But the weariness always stays. So usually I take a nap in the afternoon exam in the morning from seven to 11, three, four hours a day, three to three times a week. And then afternoon, so I usually take a nap and then on my days off, sometimes I'll take a nap twice a day. It's just very, I can't work. It's hard to really do anything. Chores are a chore.

Scott Benner 55:48
My my friend went through dialysis and I know it was it was really difficult. Hades switch to Diet Mountain Dew.

Sami 55:58
No, I don't drink. The only thing I drink is water I strictly water.

Scott Benner 56:04
Diet Mountain Dew is not that bad. I mean, if you're gonna drink Mountain Dew, get it. I mean, it's funny too, because I remember it from when I'm your age, like I'm three years older than you. But you guys, like you don't know, like, when Mountain Dew came out, it was so good. And like so different from anything I'd ever had before in my life. And I don't know, like it just, I just it's such an interesting time in our history where we were, we were able to make all these like so called foods and yet we never really considered what if anything, they might be doing.

Sami 56:40
Very, very addicting and paper that what sugar does is makes you want more. So, one one bite of a of candy or potato chips. You know, I mean, just keep going like that, Oh, I gotta have another one little pieces or two pieces. You know?

Scott Benner 57:01
Yeah, it's like gambling almost. Like, I'll just I'll just bet $1 And then before you know it, you're like, I lost 500 bucks. And, you know, it's that same sort of slippery slope thing. What am I not asking you that I should be but what don't I know about your life that's interesting or, or might be valuable for people to know.

Sami 57:24
Intention. Pay attention to your diabetes, for sure. And it's, it's, it's not a game. It's definitely not a game. No matter how frustrating it can be, or burdensome it can be you need to pay attention all the time. Even, you know, when your sugars are high, it adds up it does damage. And over years of that, it's it's gonna hit you out of the blue, you know, and if you get married, have kids, and you miss out on that. It's gonna hit you hard.

Scott Benner 58:00
I can't even I genuinely can't imagine what's what you're going through. Do you have a Do you have a dog? Do you have a seeing eye dog?

Sami 58:07
I do not know. You have to be to have seen I dog you have to travel quite a bit out and about quite a bit. And I'm not more of a homebody, so that wouldn't work. But we have a dog here we have a cat here. I have a visually impaired cat. My younger brother thought it was cool. I had a Blind Cat first blind sister. So yeah, thinking a little good.

Scott Benner 58:32
Let's see, well, your younger brother's got a it's got a good vibe about him. And I would imagine that helped you. You know, my brother has a one eyed cat. And he said he they went to a they went to a shelter. And they were looking at animals. And he's like, I saw one that had just one eye. And I thought well, this is the one I'm gonna help. That's it. And he and he took it. So I mean, it's nice to help people that need help. And it's nice to help animals that need help.

Sami 59:05
You can sense that just like people only making sense when something's wrong with you, you know, they sense that you're sick. And so a lot of dogs tend to gravitate towards me because they know, they know I'm sick. All of my brothers dogs. They gravitate towards me. So in a way, it's kind of cool that I get their attention and their love

Scott Benner 59:26
100% Wow. Well, I mean is is your attitude. I mean, I'm gonna end on this for you. Okay, so is your attitude. A function of your new perspective, like I always say that, like, the more you experience in life, the more broadly your perspective grows, right? And then the the more you can kind of look at things and say wow, that's not important. Like things that you would hold as very important in the past you know, aren't things that you would ignore you know, are are important, like that kind of stuff, you almost get the perspective of a person who's lost that I mean a life almost, but you're still alive. And instead, so instead you're like, Wow, I'm still here. And this is what what it is like, you're, you seem very kind, do you think you're a kind person?

Sami 1:00:16
Yeah, I give more than I receive, I don't like receiving gifts, I feel people have pity on me. So they give me this, or that I can't afford it. So I give more. Because there's always somebody who's the least of you, if that makes sense. So somebody who's worse off than you. So I, I find for me giving to others is it helps, helps me. Attitude wise, still kind of cynical. At the world. I mean, I know things are, are slightly changing. But it's, I feel like it's always going to be anybody with a disability is always going to be at the bottom of the totem pole, no matter what, we're always going to be shoved down there. And when we try to climb up, you know, we're pushed back to. So trying to be an advocate and, and fight for that and fight for rights. And, you know, there's laws that protect us, but they're not always followed, which is, which is frustrating, too.

Scott Benner 1:01:27
I really believe in helping people as a way to help yourself at times. And I hadn't planned on talking about this to me, but I do do you listen to the podcast with any regularity?

Sami 1:01:41
Sometimes it depends on what your what your subject is. Okay,

Scott Benner 1:01:44
that's fair. My mom's health is in a sharp decline. And as a matter of fact, talking to you today is maybe the best thing I've done today. And I actually appreciate the the opportunity to not think about things for a little while. But I, oh, God, I don't think I don't think my mom's gonna live much longer. And like, we might be talking about days. And my wife's like, why don't you cancel this recording this afternoon? And I said, no, like, you know, I just, I like it. I like helping people. And I like, making this recording. So it helps other people. And I felt like I was doing something today, and I'm in a position where I can't help my mom any longer. And I just thought, Well, I'll try to help other people. And I find it really rewarding, honestly, in ways that are hard to maybe to understand if you're not. If you don't find yourself in this situation, I guess.

Sami 1:02:45
It's like you're, you're helping your mom or connecting with your mom by helping other people.

Scott Benner 1:02:52
Yeah, no, it definitely feels like I'm also very much a problem solver. And I think I'm a caregiver. And sometime about an hour before you and I got on, I think I made the last decision for my mom that I can make. And so it's very, it's a very lonely feeling to not be able to do something for and, and believe it or not the way my brain works, asking you that question about whether or not you thought about like getting an escort? I actually felt good about that question. I thought that's a really honest thing that people in your situation must go through. And I bet nobody asks them about it. Nope.

Sami 1:03:36
It's, it's one of those questions like, you know, can be too personal. But I heard I mean, that listen to other podcasts where, you know, whatever their disability is they do they, they go that direction, because that's the only way they feel they can get connection and love from somebody else. And sometimes I feel that way too. It's from strangers versus family or friends. Again, it's that vulnerability and afraid of being taken advantage of that. Definitely held me back.

Scott Benner 1:04:11
Just get yourself up. Get yourself some muscle and a little body guard action, you'll be okay. What about other stuff? Like, you know, I mean, what happens if you like because the other thing I'm hearing from you, to me the most restrictive part of your situation is not being able to immediately get up and do something like that actually, is the thing that hit me like, What if I want to go somewhere? I can't What if I want to do this? Like I got to ask another person like that. That thing? I know is not must not be fun. But what happens if you get it in your head? Like I want to smoke weed? Like how do you make How do you make things like that happen?

Sami 1:04:51
No good question. Find somebody find a friend who does it and ask hey, can you introduce me?

Scott Benner 1:04:58
Later for things I don't just mean what I mean, like anything like you need a facilitator for some of that stuff. That's not. That's not the stuff we say out loud.

Sami 1:05:05
Right? Absolutely, yeah. Yeah. Because, again, a lot of websites are not accessible and not easy to navigate. Here, link, link, link, link link. Well, what is this link for? Or blank? Blank, blank, blank? Well, what's going on here? So, I mean, there is a law in ADA law, that website is supposed to be accessible, but a lot of a lot of that is ignored. And it's hard to, you know, there's just so much out there that you can't find every single one. But yeah, I have to depend on friends for that kind of get a feeler out there of if they're comfortable, if they're not comfortable, you know? If I think of a friend that all ask her, well, now she doesn't, you know, the topic is ignored.

Scott Benner 1:05:59
Like, what if you drop the hint, you're like, Hey, Mom was looking for some weed, and then they just kind of ignore you. And you're like, Oh, I said it, nothing happened. Like that kind of thing. Or even like, I mean, boy, that's you really would have to have a good friend to say, Look, I know, this is crazy, but I'm looking for an escort. And I don't feel safe. And I need to I need, I need some help. Because if you if we were friends, and you asked me that, I'd be like, All right, like, let's I mean, because now we're probably involved in something illegal to some degree or another. But maybe we can work it out online a little bit somewhere. And, and then I don't know, it's like, maybe it would feel exciting, like a James Bond situation. Yeah, yeah. I think you should go for it, Sammy.

Sami 1:06:44
If I do, I'll give you an update. Oh,

Scott Benner 1:06:46
my God, listen to me. Thank you. If you do that, honestly, I should be the person you call the next day. You will get right back on here. And we will talk all about that. For 100%. Sure. It really is. I mean, it's a it's just a very interesting look, you just gave us into into a life that I don't think many people can understand. And I think you've also, you know, left a great message for people listening without trying to be scary. Like you're not, you're not yelling Buddha them. Like you're saying, Look, I I did the things, here they are here was the outcome. If you think it's not going to happen to you, you know, you're wrong. And I've used this example before. And I think it works here. You know, my father would, his whole life would say I went to the doctor, I said they can't even tell I smoke bottle, and I was like, whatever. And then you know, he died from, you know, heart failure from smoking. And, you know, and, but his whole life, he was like, this isn't getting me like as he was as it was killing him. He thought it wasn't getting him. You know, and he Luckily, he lived into his 70s. But, you know, it's not how it goes with this, this. This blood sugar thing is woefully misunderstood by a great many people. And incredibly impactful on your entire body. Not just one part of it, like you have blindness and your kidneys, blah, blah, blah. But that doesn't mean that I mean, Saint me, I wouldn't say this unless I unless I was very comfortable that you're a bright person. And you know this already. There's no saying there's no damage in your heart, or that there won't be one day or any, that's, there's no such thing. This is the end of this even. And yeah, and it's not something that people talk about. And they should and it's not people it's not something people understand widely and they should so

Sami 1:08:51
yeah, it's it's blindness is survivable. It's doable for sure. Testament a testament to that. But it's not something that I would wish on anybody or even myself you know, I mean if I could go again talking prior if I can go back I would, I would. I would go bankrupt to make sure my blood sugars were the way they were supposed to be. I was taking insulin like I should have been and I was taking care of myself I would absolutely go back

Scott Benner 1:09:25
I fully expect that if I ever turn on the television and see Elon Musk saying he made a time machine I'm gonna see you bum rushing him on the stage

Sami 1:09:35
wagon with my cane Linnaean there

Scott Benner 1:09:37
we're going Elon right now let's show all these people you know, I can't I mean again just very kind of you to talk about all this and let me be the way I am. What we're talking about it I don't even know even know how to describe myself sometimes. But it just to me seems like like if we're going to talk about this, then let's really do it. You know?

Sami 1:09:59
Yeah, and And I appreciate you. Let me come on because again, it's not, it's not a topic that's talked about, you know. And it's important that that everybody knows, parents, teenagers, or, you know, whatever it may be that, hey, you know, you may have to be a helicopter parent, or a nagging parent, but it's extremely important that your child or yourself, take the time to pay attention.

Scott Benner 1:10:32
You have to find a way, you have to find a way to be a parent. And you have to believe that it's not always going to be like a great story. We're like, oh, I told them this, and they really accepted it, and everything's fine. They might not accept it, but it's still when it's over. If they're alive, and their kidneys work, and their eyes work, then you did it. You know, not not saying it has to be a battle, but it's for some of you, it will be like, for some of you, you're gonna I mean, listen, Sammy, between you and me. You sounded difficult when you were younger. What, but but if but if I was your dad, I would have kept after you because I know better because I live in this time your father didn't know. Right, fair enough. But he even would have got an inkling and said, Oh, no, this isn't okay. And he would have rode you. You'd be in a better situation right now. Even if you had a you didn't like your dad because of how he treated but you were healthy. Yeah, I would have thanked him.

Sami 1:11:27
Right. As you get older, you're like, oh, looking back? Oh, you know, that's why my parents said that. That's what my parent did that or prevented me from doing that. You know, I mean, when we're younger, we don't think about that. It's all about me and having fun and whatnot. And you don't think about the cost points of yourself or to other people, and how that might affect them or yourself. And then when it happens, it's like, oh, yeah, I get it, then it's too late.

Scott Benner 1:11:52
If you expect to get paid right now, for being a parent, you're out of your mind. You have to live long enough for your kids to get old not for them to go, oh, wow, that was great. What they did for me, and then they still might not say it to you. So it's not a job. If you're looking to get paid to be apparent, like it's, it's not really how it works. So alright, Sammy, I appreciate this very much. Can you hold on one second for me? Yeah. Thank you.

How about Sammy? Hmm, just That's terrific. Really terrific. Thank you so much, Sammy. Thank you. And thanks. So I still can't talk. And thanks. Can I be honest with you guys, I got like three hours of sleep last night. And it's like, nine o'clock at night. And I realized I gotta go to bed. So I want to thank Sammy, I want to thank you for listening. I want to thank Dexcom for sponsoring this episode of the podcast, and remind you to go to dexcom.com forward slash juice box to get started today with the G six or the G seven whatever your preference is. They have it at my link, also to remind you to go to touch by type one.org and look through that tab, Programs tab. See all the great stuff they're doing there and find them on Facebook and Instagram. I'm just gonna cut my losses here and say thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast but I promise I'll sleep before I put the next episode together for you. Thanks, guys. Have a good day.