Scott Benner 10/13/23 Scott Benner 10/13/23

#1040 Not Cleopatra

Elizabeth is a 36 year old type 1 who was diagnosed at 18 months old.

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Scott Benner 0:00
Hello friends, and welcome to episode 1040 of the Juicebox Podcast

this is Elizabeth. She's had type one diabetes since she was 18 months old. And she has a number of other things like she's got it. It's interesting. I don't want to tell you, you know, I hate doing this. This is such a good story. I'm not going to tell you anything. You just you have to listen. As a matter of fact, the title of the episode will not make sense through the entire thing. You have to listen to like an outtake at the end to find out why the episodes called this and you still might not figure it out. I don't know what kind of a detective you are. Anyway, 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. Real quick 40% off your entire order cozier.com with the offer code juice box, free year's supply of vitamin D and five free travel packs with your first order at drink ag one.com forward slash juice box and you get 10% off when you use my link better help.com forward slash juicebox that 10% is off the first month don't forget that diabetes Pro Tip series has been remastered it goes from Episode 1000 to 1026. And there's a contour add in them and there's really something special going on in that you should check it out. If you are a loved one has been diagnosed with type one diabetes, the bold beginnings series from the Juicebox Podcast is a terrific place to begin listening. In this series Jenny Smith and I will go over the questions most often asked at the beginning of type one. Jenny is a certified diabetes care and education specialist who is also a registered and licensed dietitian and Jenny has had type one diabetes for 35 years. My name is Scott Benner and I am the father of a child who has type one diabetes. Our daughter Arden was diagnosed in 2006 at the age of two. I believe that at the core of diabetes management, understanding how insulin works, and how food and other variables impact your system is of the utmost importance. The bold beginning series will lead you down the path of understanding. This series is made up of 24 episodes, and it begins at episode 698. In your podcast, or audio player. I'll list those episodes at the end of this to listen, you can go to juicebox podcast.com. Go up to the menu at the top and choose bold beginnings. Or go into any audio app like Apple podcasts, or Spotify. And then find the episodes that correspond with the series. Those lists again are at Juicebox Podcast up in the menu or if you're in the private Facebook group. In the featured tab. The private Facebook group has over 40,000 members. There are conversations happening right now and 24 hours a day that you'd be incredibly interested in. So don't wait. So don't wait. Check out the bowl beginning series today and get started on your journey. Episode 698 defines the bowl beginning series 702, honeymooning 706 adult diagnosis 711 and 712 go over diabetes terminologies hit episode 715 We talked about fear of insulin in 719 the 1515 rule episode 723 long acting insulin 727 target range 731 food choices 735 Pre-Bolus 739 carbs 743 stacking 747 flexibility in Episode 751 We discussed school in Episode 755 Exercise 759 guilt, fears hope and expectations. In episode 763 of the bowl beginning series. We talk about community 772 journaling 776 technology and medical supplies. Episode Seven at treating low blood glucose episode 784 dealing with insurance 788 talking to your family and episode 805 illness and ketone management. Check it out. It will change your life

Elizabeth 4:36
My name is Elizabeth. I am a type one diabetic who has familial hyper cholesterol EMIA as well

Scott Benner 4:47
as start off right out of the gate. We're gonna talk about that. Trying to make me look stuff up on the internet. Hold on a second.

Elizabeth 4:55
If I can spell it for you if you'd like oh,

Scott Benner 4:58
don't let me take a shot first. Okay, okay, familial, I know, Oh, watch this. It's one word to hypercholesterolaemia or whatever.

Elizabeth 5:08
familia, strong anemia.

Scott Benner 5:11
Okay. Familial than that word you said is the genetic disorder that affects about one and 250 people and increases the likelihood of having coronary heart disease at a younger age. Oh, throwing must have been a fun day. Oh, it was great. How old are you now?

Elizabeth 5:27
I am 36. Now,

Scott Benner 5:29
when were you diagnosed with type one?

Elizabeth 5:32
When I was 18 months old.

Scott Benner 5:35
Okay. In the beginning, yep. Yep. And when what? You want to say I'm sorry?

Elizabeth 5:44
Okay. No, I just I feel super grateful that I don't know life without it. I've just always, this is life.

Scott Benner 5:53
Can you go into why that makes you feel grateful? Yes, yes.

Elizabeth 5:57
So I hear from, you know, people I know students of mine who talk about how they have this child who's eight years old and was just diagnosed, I don't know that I don't know, my world being turned upside down. It's always been this way. I've always had to pay attention to carbs. I've always had to, you know, be on a sliding scale and think, okay, my blood sugars, this one, you just take this much insulin, I just ate this many carbohydrates. So I need to take this much insulin. I was never a kid who just was able to eat and do whatever I wanted. And then all of a sudden, my world was turned upside down. And I'm super grateful for that.

Scott Benner 6:46
So this, this feeling of feeling grateful is from watching other people who got to know a life without diabetes before. Correct. Okay. And do you feel like what does it? Do you see their experience and think I'm very glad not to have that experience?

Elizabeth 7:08
Yeah. Yeah. I'm very glad to not know the before.

Scott Benner 7:15
And what if I made the argument to be like, what if you just got it this year? And you would have had 35 years without it? Would you have been okay with that? Is it because you were diagnosed as a child that you imagine that in your scenario, you would also be diagnosed as a child, but more like an eight year old or 10? year old? Yeah, yeah. So you see my point? Like, what if you got it when you were 50? Do you think you'd still say I'm, I'm, I wish I would have got it when I was 18 months old?

Elizabeth 7:39
Well, if I got it when I was 50, it'd be type two. And so it'd be

Scott Benner 7:45
No, well, I don't mean to interrupt you. But I have a countless number of adults who have gotten type one diabetes at every, like, literally every age up into like, 70 years old, like 6550 45, it could happen to anybody at anytime.

Elizabeth 8:01
Oh, that's interesting. I did not know that. Yeah.

Scott Benner 8:05
So it's, I'm glad to be the one to tell you actually, because it's, um, it's been very enlightening to, to have this conversation. So I don't I mean, I don't have the exact numbers. But there's part of me that wishes I would have made a list from one to 100 and put a checkmark next to each. And everybody's names, you know, as they came along, but ya know, I've spoken to somebody in every, you know, in every generation of their life. So anyway, but So okay, so then that's why you were having trouble answering my question, because you didn't think that was a thing?

Elizabeth 8:38
Yeah. No, I had no idea. I had no idea. My again, my like, my whole life. I've had like this thought, this thought of, oh, I'm super grateful that I got it when I was 18 months old. I hear these super sad stories about these young kids who have this great life and then all of a sudden, type one diabetes just turns everything upside down. I can't even imagine being 50 years old.

Scott Benner 9:07
And knowing a whole life about it, right? If I'm Fried, fried your mind early on in the episode, and you've kind of fried mind because it just occurred to me, you're only 36 years old, but you've had diabetes for 36 years. So you're you have like an old perspective of type one in a younger person's Yeah. Experience. It's interesting because so if you were diagnosed around the 80s Am I right about 8787? Correct. And so you were right at the time where your parents would have been given you regular an MPH Right?

Elizabeth 9:45
Exactly. You got it. That's what I grew up taking.

Scott Benner 9:49
How long how long did you do that for?

Elizabeth 9:51
Ah, how long did I like take just take shots are regular and MPA

Scott Benner 9:56
regular mph. I'm assuming you use a faster acting insulin now but how long Until, until that happened.

Elizabeth 10:02
Oh, gosh, good question. I think I started taking human log um, was it around

Scott Benner 10:13
the pump? Did you get a pump? And it happened or?

Elizabeth 10:16
No, no, I started Can you mock? Ah See, like when I was like 15? Probably. Oh, wow, okay. Yeah, I think I was late to the party.

Scott Benner 10:26
That's, that's 2002. I did that with my fingers. I added 87 and 15. Together, I got 2000. So that is later. So So was it a situation? Well, first of all, you might not know because you were a kid. But I guess let me ask this first. Were your parents managing your diabetes? Your whole life? Or was it a thing that fell to you? And if so, when?

Elizabeth 10:52
So it fell mostly to me. Yeah. So when I was young, I was primarily with my dad. But with my dad, and him actually being around are two different things.

Scott Benner 11:13
So you live at the same address? Correct? Yes.

Elizabeth 11:15
Uh huh. I had to sibling Well, now, let's be honest. I had one sibling who helped me with my diabetes, the majority of the time, and also I'll say his name, my brother, Wade. He helped me test my blood sugar. He helped me take my insulin. So my brother Wade helped me a lot. Yeah, when I was 15, I went to live with my mom. Okay. And my mom basically was like, What the hell? I know. It's, it's, we're in the 2000s. Now, we're not using this. Let's go see an endocrinologist and get with the times.

Scott Benner 12:05
Can I ask a question? Sure. Did you not have a lot of contact with your mom for the first 15 years?

Elizabeth 12:10
No, I had a lot. I say no. Dammit. Elizabeth's thought that. Yes, I did. I did. I had a good amount of contact with my mom, but she

Scott Benner 12:20
didn't feel like making input about the diabetes until you lived with her.

Elizabeth 12:24
So she tried. As far as I know. She tried to make input about the diabetes. Do you have do you have another podcast about like, putting the fun in dysfunctional? Let's talk about drama. I got Mmm hmm.

Scott Benner 12:42
Yeah. I was just trying to discern if like she, you know, kind of the way you put it made me feel like it was like something she noticed for the first time, but it was something she had sway over for the first time. Correct. Gotcha. Yes. And then I have one last difficult question.

Elizabeth 12:58
Oh, I? Oh, yeah.

Scott Benner 12:59
Are you okay with

Elizabeth 13:00
that? Nothing's nothing's that difficult before it.

Scott Benner 13:03
How do you end up with your dad having custody? In the in that time? Like? Yeah, what? Right? Yeah. Like, my point is a lady has to try not to get custody of their kids. So how did that happen?

Elizabeth 13:20
Yeah, I right.

Scott Benner 13:24
Okay, you're sure you don't want to say it doesn't matter to me. But is there?

Elizabeth 13:28
No, yeah. So honestly, I truly believe I truly believe that, that my dad like paid people off and like that, oh.

Scott Benner 13:42
That's not what I expected you to say. But okay. You because like his you. It's interesting, like you suggest you suggest that your dad's not around very much that you're kind of raising yourself along with your siblings. But yet somebody thought he was the better choice for you to live with that. That's the part that confused me.

Elizabeth 14:00
Yeah, yeah, I know. I know. So, when I was older, I, I got the court documentation. My mom gave it to me. Um, so I was able to read through it. And it still to this day, it does not make sense to me. How he got custody of me. It doesn't. Okay, I've read through so much. And I'm like, what, how did this happen are to

Scott Benner 14:31
figure out okay, well, we're not going to understand that that's fine. So it's okay, so I'm sorry, I waylaid but you're 15 you're with your mom now. And she's like, Hey, this is this is not how people do this. Let's make a change. What and then what did you do? What was that change that happened?

Elizabeth 14:47
I started taking human log. And I was I was still taking NPH but I started taking something called What was it called? Love. When Wente um, it was just a night. Le en te I'm pretty sure that's how

Scott Benner 15:09
it was spelled. That's how people say it when I hear them say it to lenti. Yeah. How is it supposed to be said? No, I think that's right. I think you got it. Yeah. Yeah.

Elizabeth 15:19
So I, I did that I can, you know, took that those insulins until I was see, when did I start pump therapy? Well, it was the same year that my mom died. So it was 2006 2006 is when I started pomp therapy.

Scott Benner 15:47
Holy. It was with you were only with your mom for years before she passed away. Yeah. Oh, my God. You in here? Are you trying to bum me out? No. So how, Oh, God. So you're 19 your mom passes? Unexpectedly or expectedly? Well,

Elizabeth 16:08
I was I was 21. Okay, sorry. I'm barely 20 when she passed away, yeah. Sorry. What was your question?

Scott Benner 16:17
Was it expected or unexpected?

Elizabeth 16:20
Um, a little bit of both. So she died from cirrhosis of the liver. She, as far as we knew, had been sober for two years. And at some point, she secretly began drinking again. Gosh, you know, alcoholics, they, they hide it very well. And so yeah, that day. My lived 10 minutes for my mom left me a voicemail. She had come down and put a post it note on my front door. And she wanted my husband at the time and I to come up and have dinner with her. And so I you know, I returned her call. I'm calling her back. I'm calling the house. I'm calling the camp phone. She was she was the like, groundskeeper at a kid's camp. Actually a kid's camp when I went to diabetes camp as a kid. Dude, I just knew. I knew. I'm like,

Scott Benner 17:33
okay, when she didn't answer the phone. You thought something was wrong? Yeah,

Elizabeth 17:37
I'm like, She's not answering the house phone. She's not answering the camp phone. I could have taken a 10 minute drive, but I just knew what I was going to find. So anyway, my stepdad went home. And I get a call from my little sister's dad. And I didn't get calls from him. So I answered the phone. He's like, Hey, I'm like, hey, my mom's dead, isn't she? And he was like, Yeah, she is. So I mean, like, right away. I knew that she she had begun drinking and my mom and I were really close. She was my best friend. So it it all came out. That she was like by the pool. There were there were no kids there for camp. And so yeah, she was she was like, come up have dinner. Let's go swimming. You know, Camp doesn't start for a few days or something like that. Yeah, there was a there was a cocktail. Right next to her. And she was lying by the side of the pool.

Scott Benner 18:46
I'm sorry. Do Do you have any impacts from her drinking in on your life? I do you have like, are you? Are you a drinker? Or do you like, like, stay away from it on purpose? Or can you can you connect any of that stuff?

Elizabeth 19:03
Oh, absolutely. So for say like, three years after she died? I would not. I just wouldn't touch it would not touch this stuff. I party in high school. And like, I thought my mom was so cool. You know, like my mom would like, buy us alcohol like oh my gosh, my mom so cool. And then after the fact, I was like, No, Your Mom's an alcoholic. And yeah, I there's been times in my life where I've thought

Scott Benner 19:47
Do you have a problem? What made you what made you question yourself?

Elizabeth 19:54
It's it's the amount that I It was drinking in in one day. It just in that particular day, okay. Yeah, yeah. But then, like the day before that and the day after. I was like, not at all. Drinking. Yeah. So yeah, I've always in the back of my head. I've just been like concerned about that.

Scott Benner 20:31
No, I would I would understand. You are at a point your life you don't assume you don't think you have trouble like a problem with alcoholic? Your mom did? Right? Nope. Okay. Okay. How did drinking at an earlier age in school impact your diabetes? Or did it not? Because you were just because of the management style?

Elizabeth 20:51
Yeah. I didn't really manage my diabetes. Like for a long time? I didn't. I know, I didn't pay attention to it. I didn't care about it.

Scott Benner 21:09
Nobody was tracking it. Now, like from a parental aspect.

Elizabeth 21:15
Not real. Yeah. Yeah. My mom was Yeah. Like, you know, back in the day, you've got this logbook. And yeah, you write down what your blood sugar was, you know, every, you know, like, bolusing has been around for ever. And, but, but me personally, I didn't. Okay, you remember how I said that? My mom was my best friend. Yeah. My mom was more my friend than my parent. Okay. So, so now when I went to live with my mom, I really didn't have a whole lot of like, parental. I didn't have parental guidance anywhere.

Scott Benner 22:12
Yeah, I'm getting that okay. So and you have a doctor that was helping you or was there were you just kind of on your own and you and not caring about it?

Elizabeth 22:22
So when I I did I had this doctor who gave me the heebie jeebies. This doctor freaked me out. But, but my dad was just always like, he's the best. He's the best. He's the best pediatric. Okay, fine. And so I saw him or, I mean, years from he's not the doctor who diagnosed me. But I saw him. Yeah, for years. Like, even when I went to live with my mom, I continue to see him. You my a one C's were. Hi. Okay. My my whole life. Right. And until I like, took it seriously, and we can, you know, we'll probably get to that. But yeah, I'm a Rambler. You're off track

Scott Benner 23:21
doing fine. I have a question. I have a question though. Your agencies were high. What does that mean? Can you put a number to it? Were they being tested? Or you just assume they were I?

Elizabeth 23:31
Oh, no, they were being tested because I was going and seeing this this endocrinologist who gave me the heebie jeebies my whole life, but was the best so I continued to see him. He was like, what, like, smack my butt because he would be like, you know, you can you can give you can give shots right here in the you know, in the tushy. And he would like grab my butt. And like, say, like, you can right here, like in the tissue. Oh, are

Scott Benner 24:00
you in that I was happening?

Elizabeth 24:02
I was my whole life. He did that my whole life. Um, I'm like, this just creeps me out. Y'all want me to freak out your dad

Scott Benner 24:12
in the room when that was happening? Yeah. Yeah. No one never said. Don't slap my daughter on the butt. No,

Elizabeth 24:20
no, no, never. No, he's the best we keep going to him. He's the best. He's the best. One Okay, maximum pinches my butt. Anyway, okay, so I'm like in the teens, man.

Scott Benner 24:38
Like when you were you were older and younger. And you're a once he was in the teens the whole time?

Elizabeth 24:43
Yeah. Yeah. Yeah. Like, it was bad. No kidding. It was bad. It's real bad. Which is Which again, is why I'm like, why does this guy have custody of me?

Scott Benner 25:00
Yeah, well yeah, it's possibly just pimping you out to the doctor is very strange thing is really bizarre. You Yeah, you are a half an hour into this. And if you told me right now I'm making all this up. I'd be like, Oh, that makes me feel better. No. I'm not okay. I'm not horrible. I mean really hard to put into words. And, and, and then when you're you're actually on your own when your mom passes you were married at 20 Ah, okay, so, Elizabeth. Okay, go ahead.

Elizabeth 25:35
Hi. Um, I was married

Scott Benner 25:38
twice. By the time you were 20.

Elizabeth 25:41
That was my second marriage.

Scott Benner 25:44
How old were you when you got married the first time? 18 How long did that last? I guess I should ask. No longer long months. Now. Can we measure it months or a year? Second one didn't last long. I don't know. I don't imagine. No. Why were you marrying guys?

Elizabeth 26:00
So? You know?

Scott Benner 26:03
I mean, I do know, but I'm waiting to hear if you know, yeah. Yeah, no,

Elizabeth 26:06
I know. I know. Now. Yeah. I know. Now. I wanted a man to love me.

Scott Benner 26:17
No kidding. That's, I'm sorry. You found yourself in that situation? Yeah, it's suck. When did you figure out not to do that? How old were you? Are you gonna say 37? And you're 36? Right?

Elizabeth 26:32
No, no. Okay. Because my husband now and I have been married for almost two years. Oh, good for you. Yeah, finally,

Scott Benner 26:42
is your seventh husband? No, sir. I'm just using her

Elizabeth 26:46
time's a charm.

Scott Benner 26:48
I was just teasing you. So you were married at 18? Married at 20. And then not married again? Till 34? Correct. Did you feel unloved in between those times?

Elizabeth 27:00
Oh, yeah. Yeah. Yeah, I thought I was just like, the defective. I thought like, I'm never gonna find someone. I can't. I can't do this relationship thing. Like, I'm just I'm not. Yeah, I just was like, No, it's never gonna happen. I'm just going to be, I'm just going to be single forever.

Scott Benner 27:27
But that leave. Was there a hole there? Like, I'm assuming you felt? I mean, I'm assuming you felt abandoned by your mom's death. And by your dad's lack of desire to be valuable to you. So do you feel like do you feel like that hold that entire time? Or do you find other ways to to make that go away?

Elizabeth 27:51
So I filled that hole with music. Really?

Scott Benner 27:56
No kidding. How so? Playing it listening to it?

Elizabeth 27:59
listening, listening? Yeah, I have a guitar, but I need to play it more. I I'm not great at it. My actually my husband got me it for Christmas last year. Yeah, I shouldn't play it more. If you ever

Scott Benner 28:17
try a therapist or talking to someone outside of your life?

Elizabeth 28:20
Yeah. Yeah. I've gone through a lot of therapy actually. Actually, my mom, like when I went live with my mom, she had, like this checklist of things. Because she like knew that I had not been taken care of. Like, went to the podiatrist, we went to the ophthalmologist, we got me in therapy. So yeah, she had this whole entire list. But she did it in little bits. Because she didn't want to overwhelm me. She just knew that I had not been taken care of. So she she did what she could in the little amount that that she had to try to

Scott Benner 29:13
you getting into a better situation. Yeah. Yeah. It sounds like she was dealing with her own stuff, too. So yes, that's difficult. Do you have any kids? By any chance?

Elizabeth 29:24
I do. Yeah. I have a 12 year old child, Addison. And the reason I say child is Addison is non binary. And I'm like, we're pretty open about it.

Scott Benner 29:44
Did you did you have did you have Addison with your second marriage? After that, all right. I gotcha. Yeah. Oh, Elizabeth, you were you were a party there for a while, huh?

Elizabeth 30:00
Actually, you know why? In high school, there were two lenses and we we were really good friends. And my nickname was Liz party. Actually.

Scott Benner 30:16
I was trying to be jovial but I didn't know I would hit on it on a fact. Sorry. No.

Elizabeth 30:23
Yeah, I just I was searching. I was searching for just I just wanted to be loved. And I was searching for it. And finally, when went, you know, in my 30s Finally, I found it. Yeah. No, I was. I was not married to Addison's biological father. Thank God, because He is just a POS.

Scott Benner 30:51
Do you find that you were? I mean, I guess this is probably just something people say at this point. But I want to see if it was true for you think did you look for men that inevitably were going to hurt you? not intentional. I don't imagine it was intentional. But do you think it was? Do you think it was happening? Oh, yeah.

Elizabeth 31:11
Oh, absolutely.

Scott Benner 31:13
Okay. How do you break that cycle?

Elizabeth 31:17
I didn't. I didn't break that cycle. I met my husband. And he was just so freakin sweet. And good to me. Yes, he broke the cycle. You got lucky. Yeah, I did. I got really

Scott Benner 31:39
lucky. Let me ask you. Like, think of the I don't know the guy before your husband is still still a bad like still not good for you? Yeah, yeah. So you really did trip on this guy by mistake? Yeah. Uh huh. How did that happen? How did that happen? Did you change the people you were hanging out with? Did you find yourself somewhere? You usually weren't? Do you know? Can you think back to how you met him?

Elizabeth 32:01
Oh, yeah, I know how we met. It's, it's very interesting. So myself and three other ladies. We created the singles group on Facebook, okay, years ago. And each of us eventually left it. But the way that it would work is when when you would leave, you would pass your baton, you would pass your administrator baton to someone that you thought could continue to run it well. And so I rejoined it years later, and I was super happy to see it, like still going strong. And I wasn't looking for anything really. I just was, like, bored. And that's that's where we met was in this Facebook singles group that myself and three other women had created years ago, it was still going strong. And that's, yeah, that's, that's where we met.

Scott Benner 33:12
before. Yeah, that's right. Yeah, that's right. That's a lovely thing. Was you did make it for yourself. Really. You made the group and you have found some more conquers. But then you found your husband, and now you're happy? Yeah, good for you. Yeah. And you're young, too. Because it's a long story. And it feels like like, I mean, honestly, if you told me this story, and then told me you were 55 I'd be like, Oh, this makes sense. Like, you don't I mean, like, a lot tap in here, right? It could fill a full life, but you're not really. I mean, you're not really started yet. You know, it's hard to think of when you're 36 I'm sure you're like, you know, I'm old. Trust me. But, but you're not here. You know, I mean, you're not you have a lot of life left. You met somebody you've got a child, you know, I'm assuming you love and and I guess see, there we go. They have a child you love. And you have a lot of time left with them with a new family and you'll be young when your your child moves on down to college as well or into the world wherever they end up. I mean, that's only six years from now. You'll only be 42. When that happens. You get the chance, you know, it's really cool. That's really cool. Yeah, it really is. Do you feel that? Do you feel like there's been a big shift in your life?

Elizabeth 34:27
Oh, absolutely. Yeah.

Scott Benner 34:29
Do you wonder Do you ever wonder who you'd be if you didn't get saddled with I don't want to speak ill of your parents. But I mean, I don't see how I couldn't like if you didn't get if you didn't get saddled with two people who were the on that level parenting. Do you ever wonder what would have happened to you?

Elizabeth 34:46
Oh my gosh. I don't. I don't because with without all of it without all of the Bad. I would not be who I am. Oh,

Scott Benner 35:05
that's a really great answer. You are happy with who you are.

Elizabeth 35:08
I am good. Yes. Very, very good. All right. So

Scott Benner 35:11
when did you figure out to take care of your diabetes?

Elizabeth 35:15
When I found out that I was going to be a parent? Oh, the

Scott Benner 35:18
old pregnant thing made you do? Yeah. Huh. Pregnancy made me do it.

Elizabeth 35:23
Exactly. Yep. I was 23. And I was like, Okay. Well, we have got to make some serious changes. No, no more of this party and crap. We need to get it together, dude. So yeah, I see you taking it seriously. Yeah,

Scott Benner 35:44
you shut down the party and you paid attention to your diabetes as well. The party I'm sorry, was the party drinking? Or was it drugs to

Elizabeth 35:53
drinking and marijuana? And then

Scott Benner 35:57
the diabetes thing though, you're 23 You've had diabetes your whole life that you're not managing in any way. So how do you begin to learn what to do? Like, did you always know when you just weren't doing it? Or did you have to learn from scratch?

Elizabeth 36:10
Yeah, no, I always knew and I just wasn't doing it. Okay.

Scott Benner 36:14
Can I ask what you thought was gonna happen? When you weren't when you weren't taking care of yourself? Did you just think it was gonna magically be okay, or did you think it'll be bad, but that's in the future?

Elizabeth 36:24
I didn't. I didn't care. I just was like, Addison. gave me something to live for. I understand. I was just surviving.

Scott Benner 36:41
Yeah. No, I understand. Well, that's lovely. Do you ever. I mean, Addison is a little young for you to put that on. Do you think you'll ever share that with them at some point or have you?

Elizabeth 36:54
I'm Addison and I have a pretty honest relationship. So, I mean, I haven't said those words. To Addison.

Scott Benner 37:04
Maybe it's an adult, you know, like, once it's not a burden. And that it doesn't feel like a responsibility. It might be nice to it might be nice to know that as an adult. Like, yeah, I don't mean. Yeah. I mean, I can see why you wouldn't say now, but, yeah, 10 years from now, something like that. Might be a nice thing to know. Anyway, it's up to you, obviously. But, but So okay, so baby's coming. I gotta do something. You just start taking your insulin the way you're supposed to. I mean, are you supposed to be carb counting by then? 2000. Right. You shouldn't be right. Yeah, you're not right. You're still doing the regular mph since you're 15. So so what were you doing just shooting your basil and not bolusing for meals? Or how were you handling food before you've pulled it together?

Elizabeth 37:53
Yeah, so yeah, I would you know, Bolus, and then I would I, basil, and then I'd Bolus when my blood sugar got high. Okay, I'd be like, Oh, my blood sugar is high. I'm gonna take insulin to bring this down and

Scott Benner 38:12
you're high because you feel high or you're high because you're testing and you know, you're high.

Elizabeth 38:17
I would feel high and then I would test and confirm that I was high and take the proper amount of insulin for it. And when we I ran a high alarm

Scott Benner 38:25
when we say high high enough for you to go okay, I guess I'll give myself some insulin 300 Yeah,

Elizabeth 38:31
three, yeah, three hundreds. Yeah.

Scott Benner 38:33
So you started feeling sluggish and nauseous or however it made you feel and that made you think alright, I'll pay attention to this. So then how do you I mean, I assume that you go to an OB I'm assuming the OB gives you the big talk right? You have type one diabetes, this baby's not going to come to term if you don't like you probably got the full court press from them right? No, because anyone tried to help you

Elizabeth 38:58
know, they don't disguise the OB I went to which this is something I regret. I wish I had done more research and chosen a better OB. The OB I went to I was his first high risk patient.

Scott Benner 39:15
Well, listen, your bar is set pretty low. If he doesn't grab your ass. You're pretty much like this guy's All right.

Elizabeth 39:20
Yeah, exactly. Exactly. Yeah, I mean, he's not he's not been to my but

Scott Benner 39:26
yeah, look, I've really upgraded I don't even mean that. I mean, obviously that's horrible. I'm not laughing. I'm laughing if you're that you're finding yourself in these situations, you know? But yeah, I get but but serious. Being serious. Like you. You had a fairly low bar. Like it might not have been a conscious thought. But I'll tell you what, when you go in there and you don't get manhandled, I bet you're like this is better. Yeah, you know, yeah. Sad, but I bet you it was true. So yeah. So you get a doctor who's never handled a high risk pregnancy before. Yeah. And so you're on your own to figure this out. So how do I how am I? How do you figure it out?

Elizabeth 40:04
A lot, a lot of reading, you know, a lot on the internet and a lot of just remembering what I already knew. I knew it. I knew how to do this. I just had to put it into practice.

Scott Benner 40:20
That's great. And you got it done a healthy pregnancy.

Elizabeth 40:24
Yes, Addison is, is very healthy. Actually, this kind of leads into the familial hypercholesterolemia. There are a couple of genes that I have passed on to Addison. We've done genetic testing to find this out. I have passed down this gene. And they also have this familial hypercholesterolemia. It comes from my dad's side, it came from my grandma, to my dad, for my dad to myself, and then three more of his children. There's one of his children that does not have this did not get the gene. Also, another gene that I didn't even know I had until last week actually causes basically epilepsy. Addison was diagnosed with epilepsy last January. So, so Addison is, you know, has their own struggles, epilepsy and familial hypercholesterolemia.

Scott Benner 41:39
I swear to God, what a word hypercholesterolemia. What what are the impacts of that on your seriously gluten, you have even gotten like a, like an easy to pronounce thing. But what's the implication take a medication to have to eat a certain way? Like what what's the management of it? Like?

Elizabeth 41:57
Right, right? Yeah. So I have been taking statins since I was 11. Statins are the kind of that's what they've used for years to lower cholesterol. And then I began taking something called Ezetimibe. That's the generic the brand name was called Zebadiah. Like a year and a half ago. And then last year, I'm going to ask my husband, was it last year, I tried to start taking Repatha? Was it here in Colorado? Or was it in Utah? Okay. Last year, I started taking Repatha. Okay, it's it's injectable, is it's called a K nine inhibitor. Okay. And the canine is a well, P canine, I think is what it's called, actually, that is what my gene, this gene that's mutated, is not stopping. And so this PKI inhibitor that I inject that was a game changer, no kidding.

Scott Benner 43:11
It impacted your your cholesterol, the way you were hoping.

Elizabeth 43:15
Oh, my gosh, so much about that so much. Yeah.

Scott Benner 43:19
So this is like, is this like a monoclonal antibody kind of a situation? What is this? I tried to figure it out. And because listen, I mean, was I don't want to be a bummer, right. But you didn't manage your diabetes for 20 years, and you have a thing that gives people heart attacks before they're 50. That's a bad combination.

Elizabeth 43:38
It's a very bad combination. Yeah,

Scott Benner 43:40
yes. So this is exciting for you to find something that works.

Elizabeth 43:46
Yes. Yeah. It was so exciting. When I went and got a lipid panel done after taking Repatha. And my LDL cholesterol was 48. I was shocked and delighted. People without FH. That's what that's easier than whatever. Familial Hypercholesterolemia just FH. People without this. They don't even have LDL cholesterol of 48. Wow. I was like, Oh my gosh,

Scott Benner 44:26
this is amazing. Listen, a little googling. Repatha is A human monoclonal antibody against the PC, SK nine protein as potent cholesterol lowering therapy. I'm just impressed that I knew it was a monoclonal antibody. Yeah. I'm learning stuff while I make the podcast. Very cool. I'm hoping everyone else's too, but well, so that's super exciting. And is is Addison using it as well.

Elizabeth 44:54
No, Madison, right. Yeah. Addison is taking us statin and Is that am I not taking any injectable? Right now Addison's terrified of needles and yeah, only 12. Oh, but you

Scott Benner 45:09
would prefer using the injectable, but it's the needle phobia that's stopping you.

Elizabeth 45:16
It's the so Addison's just not old enough for it. Yeah.

Scott Benner 45:19
Do you think that eventually?

Elizabeth 45:22
Oh, for sure. Yeah. I really don't care that much that, like you're afraid of needles? No, I'm going to inject you with this. To your heart.

Scott Benner 45:35
Do you have? Have you ever had Addison checked for type one? diabetes markers?

Elizabeth 45:42
Yes. Anywhere? There are? Oh,

Scott Benner 45:45
that's good news. I'm glad. Yeah, me too. That's great. I'll tell you what another thing I'm proud of is I have been talking around using a pronoun for the last 10 minutes. I'm doing an amazing job at it. You're doing great. It's really, it's a muscle like you have to work it a little bit. But I really did. I can find my path through the sentence without it being choppy or awkward. Or, like, you have to listen back if you want proof of it. But yeah, like because I don't know what the right thing to do. And instead of confusing myself by like fumbling over the right thing to do. I'm finding a way to talk without the without he him she her. Yeah, and I'm doing it. Oh, that's all. How, how was that for you? Like, when does that as they come to you and say, I'm non binary?

Elizabeth 46:33
Well, Adam, actually Addison came out to my husband first. Okay. My husband and Addison have a really awesome relationship. Um, yeah, that's, that was like number one for me. My kid has to like you, if my kid doesn't like you get out. Yeah. They sent Brad like a meme saying that they were a lesbian at first. Okay. And it's it's changed a couple times. But Addison has finally found their identity. And I have told Addison, before they could even understand what it meant. That, who ever they were, whoever they loved, as long as Addison, and whoever they were with. treated each other. Well, yeah. I, I loved him.

Scott Benner 47:32
Well, I just had to imagine. Yeah, I just had to imagine after the upbringing, you had in your experience, you're going to be the last person to judge somebody? Uh, huh. Yeah, exactly. That just seemed obvious to me. Okay, so I want to make sure that we've talked about everything that you want to because I have kind of a heart out at one hour today, and I apologize. I have a meeting coming up from my mom's health, I have to get on a phone call. So I let me just ask you like, is there anything we haven't talked about that you wanted to?

Elizabeth 48:03
Well, last thing is my my dad. I'll make this quick.

Scott Benner 48:09
Don't make it quick. But just I just want to make sure we're moving in the direction of wrapping up. That's

Elizabeth 48:14
all got it. Got it. Yeah. My dad. When I was a kid, I remember seeing my dad with these big scars up his arms, up the back of his legs up on his chest. He had a quadruple bypass surgery. He had two heart attacks that I know of. He passed away. Let's see. Seven. No, I was 24. But four years after my mom passed away, and he died of a heart attack. And like, I had already started managing my diabetes. And I was like, That is not going to be me. I am not going to be a statistic. This is not going to get me. And so I started talking to my cardiologist about like, Okay, this thing has haunted and taken members of my family for decades. Yeah. What I want to know, I want to know the root. I want to know where it comes from. Yeah. And so when this genetic testing started, he was like, hey, I want to I want to talk to you about something. And I was like, Heck yeah, let's do that for you. It seems, and that is how we found out this little tiny gene that chills on the end of the liver is what has caused this

Scott Benner 50:00
and it got your dad the FH got your father? Yes, yeah. Wow, look at you, you you, I have to say, in a number of ways, you know, people always talked about like breaking a cycle, but in a number of different ways you've accomplished that with very little help from other people. It's very cool. Now it's very, very cool. A lot of people would have given up, you know, like, honestly, Yeah, I bet you did. You know, What stopped you from giving up,

Elizabeth 50:30
seeing my mom not give up.

Scott Benner 50:33
Just want light. Because you know, your notes. It's funny. Your story is not captured in the notes that you sent me. But oh, yeah. Yeah, but but which is fine. But my wife asked me last night. She's like, Who are you interviewing tomorrow? I said, a woman named Elizabeth. She said, what does she want to talk about? And I opened up your note, and I thought, and I read it. And I said, I think she just wants to tell me, she's a survivor. And that's what I took from what you wrote, like I not that you said that. Now I understand. But when I read what you wrote, I thought, this is a person who's been through a lot. I'm going to learn about what they've been through. And I think they want to leave me with the idea that they that they fought, fought a big foe, and they won. And that's all I said, so does that resonate with you at all? Or was that just

Elizabeth 51:18
Oh, yeah, yeah. Yeah. I agree. Yeah.

Scott Benner 51:23
I mean, it's hard not to after hearing the story, honestly. I mean, jeez, you could have like, I mean, there had to have been a moment you just you must have gone to a bathroom once inside the door and been like, what is happening?

Elizabeth 51:35
Yeah, yeah, pretty much. What did I do

Scott Benner 51:39
holy? Is no one gonna step up. Like, I'm gonna do this myself, I guess. Like, oh, my God. I mean, you're like really? Like because of your, like you said earlier? Like, you feel like you're a little all over the place. Do you have ADHD? Are you just a little all over the place? I'm a little all over the place. Fine. It's not a big deal, by the way, but because that's your style of talking. Your your story comes out in like chunks. And, and in, like, some people's stories come out very smoothly. And they almost feel like, I don't know, like you're spreading warm butter. You know, but but yours came out more like the butter was out of the refrigerator. And we were having to get it soft to put it on, which is fine. Like, which is absolutely fine. But because of that it sticks in my head. Now an hour later in chunks like, My my, my parents split up, I ended up with my dad, which right away made me think something's wrong. Like moms don't lose their kids like that. You know? And then you're like, I don't really know why we're not together, which then told me you're not judging your mom's situation. And then you because it would be easy to say I wasn't with my mom because she was an alcoholic. And that's how my dad was able to get me get but you didn't see it that way. And then you start telling her story, but you tell her story without judging her. And then she dies. And I'm like, Holy hell, like I already thought you had enough. Like I thought, Alright, she'll grow up with an alcoholic mom. That'll be tough. No, no, mom's dead. Mom's not just dead. I'm married already. I'm not just married. I'm married for a second time already. And as you kept laying it on, I was like, where's the part where she walks into traffic or tries heroin, Blake like, and yet that part never came up in the story. You just kept going. And then you get pregnant, and you're like, god dammit, I'm gonna fix this. And then you did. It's insane. And I'm just saying Good for you. I'm at a loss for words for what to say. Like, they should put a statue of you up in front of something. Seriously, no, like, like, I'm from Philly, they should take that rocky statue down and put one of you up there. Like this is just like you have more than your fair share. And now I'm really left as I go back over it again. Wanting to say again, how cool it is that you're only 36 Like it feels to me, Elizabeth, I've interviewed really older, like people who are older, like I told you 60s 70s I think I interviewed a woman or under 100th birthday once. And but, but one thing I want to share with you. And then I'll let you say whatever you want to say before we go but I want to share this thing with you. I've learned a thing I think is going to help you. When you talk to people in their 60s. And they refer back to times in their life. It feels like they're talking about someone else. Or like they've had three lives. And so right now this probably all feels still very like, part of like your current story, but there'll be a day where you'll sit down and tell somebody you know, I got married when I was 18 and when I was 20. And it will seem like it was someone else. And it won't be a part of your current narrative. It'll just be like what made you you but it won't but it won't be this fresh. Not that you've seen burdened by it because you by the way, oddly, Elizabeth do not seem burdened by any of this. I'm assuming you're smoking a lot of weed. But but uh But if you live in Colorado, I heard that part I was like, there's definitely like a mighty x in Elizabeth's house is what I was thinking. Or a vaporizer of any kind. I didn't mean to just pick one. So, um, but, but I mean, I really think I found myself thinking that so many times while like, a 65 year old woman tells me a story of she lived an entire life with a man, like, like a 20 year life, they raise children. And then he passed, and she met someone else, and lived an entire another life. Like, it's just, that's gonna happen to you one day, like, you're gonna look back on that and not, it's not going to feel the way it feels now. And I'm excited, like, I will be dead by then Elizabeth, because I'm much older than you. If by some chance I have a podcast 20 years from now, I want you to find me because I'll interview you. For sure. Sirius okay, really? What a wonderful story. Do you have anything you want to end with?

Elizabeth 55:59
So last thing, the reason that my dad was so set on me being there is I was literally money in the bank. He went on medical retirement. And so he got a Social Security check for himself a spouse. Have you had one? And any child under the age of 18?

Scott Benner 56:19
Oh, touching it back. Exactly. Yeah.

Elizabeth 56:23
So I I think that's, I feel that's a big reason why he fought so hard for me to live there. Literally. Money in the Bank.

Scott Benner 56:33
Yeah. Well, listen, he joke's on him because he ends up giving you the best gift of all by dying.

Elizabeth 56:38
Yes, yeah. Yes. Yeah. You very much.

Scott Benner 56:41
You looked at that situation? You thought I gotta get out of this. Yeah. And if he lives on forever, you don't get pressured like that about your heart? Yeah. Wow. Um, I mean, listen, it sounds callous. But you know, it just it just kind of is what it is. And you don't see like the person who cares. Don't I have one last question out of left field? Maybe a little but do you have any? I mean, you're married. Right? Your husband walks through the kitchen slaps you on the butt? Does it make you feel weird? No, not at all. You're okay. Yeah. Yep. That's all I was just wondering. Like not by the way, if I had for $50, and you made me bet on the answer to that question. I would have said Elizabeth okay with us. But I was just wondering if it was something that lingered with you? No, not the worst thing that's ever happened to you. So it didn't really stick with you? No, it's not. Yeah.

Elizabeth 57:34
It's just a weird thing that doctors so frickin weird.

Scott Benner 57:39
There's, there's, there's another odd thing you'd never say your life was so messed up that a Hanzi doctor as a child, you're like, no big deal. I can handle that. Whatever. Yeah, we're gonna just have to let that go. Because I got bigger problems. Hopefully, Elizabeth, you somehow have my favorite interview I've done in like a month. Like, you know, really, really, really wonderful. Oh, my God. All right. Well, I wish I spoke to eat because I could ask you if there's little vaporizers are really the way to go. But I would have no context for it. So I'm just gonna say goodbye and ask you to hold on for a second. Okay. All right.

Hey, a big thank you to Elizabeth for coming on the show and sharing that story with us really incredible. That's pretty much it. There's no ads. But there's a little bit at the end here with me and Elizabeth that will explain. Sorry, I needed a drink. That will explain the title. I think we'll see what happens. We'll see if you get it. Don't forget the diabetes Pro Tip series has been remastered or runs between Episode 1001 1026. And there's a very special offer in one of the ads that you'll find within the series. You should check it out. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes, there are now over 42,000 active members. And there's a conversation happening right now that I guarantee you would enjoy. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. You introduce yourself keep it kind of brief and then we'll start talking. Alright. Excuse me. I apologize. I'm gonna turn my head alright. In fairness to me, you burped in my ear before your microphone came on. Oh, where there was a really weird sound that happened. One of the other I was like,

Elizabeth 59:39
I may have Cough. Cough. I'm sorry.

Scott Benner 59:44
Sorry. It was hilarious because it can't because here's what happened before we start recording. It came on. And I have I mean I've done this close to 1000 times. This is the first time I've thought this one could be like someone Fine with me. Because your name is Elizabeth. Oh, so I thought maybe, maybe this is going to be the time you know. And so I started the recording right away because I was like, well, if somebody definitely want to record it, and so, um, so I can let people hear it. And then the the audio comes up and I hear and I'm like that said, this is the time like someone's gonna belch for an hour into the microphone, under the guise of them being Liz Taylor and I'm like, I'm in I'm up for this. Like, I'm gonna sit here for an hour and let them do it, you know? Oh my gosh, so that when you said hello, I was almost disappointed. Oh, it was almost like it's a real person. Damn it. Anyway, sorry, no

Elizabeth 1:00:49
person anyway, I don't have purple eyes. And I do have a bunch of diamonds either. I'm really gonna burst your bubble.

Scott Benner 1:00:58
Okay, go ahead, introduce yourself.

Elizabeth 1:01:01
Okay, so yeah.

Scott Benner 1:01:05
When you support the Juicebox Podcast by clicking on the advertisers links, you are helping to keep the show free and plentiful. I am certainly not asking you to buy something that you don't want. But if you're going to buy something, or use a device from one of the advertisers, getting your purchases set up through my links is incredibly helpful. So if you have the desire or the need, please consider using Juicebox Podcast links to make your purchases

#1039 Since 1967

Sheila is 61 years old and was diagnosed with Type 1 at age 5 - in 1967.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 1039 of the Juicebox Podcast.

Today on the podcast I'll be speaking with Sheila. She's had type one diabetes since 1967. She has lived a full life had children been married, and been through quite a lot. This episode will discuss some of the things that Sheila has traversed. 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. We're becoming bold with insulin, save 40% off of towels, sheets, hoodies, all kinds of clothing PJ's everything that they have at cozy earth.com. And to save that 40% All you have to do is use the offer code juice box at checkout. You can get a free year supply of vitamin D and five free travel packs with your first order at drink ag one.com forward slash to Xbox. And last but not least, the diabetes Pro Tip series has been remastered it runs between Episode 1001 1026 In your players, and there's a special offer in the contour next gen Ed's if you haven't heard it, you really should go find it. This episode of The Juicebox Podcast is sponsored by us med us med.com forward slash juice box or call 888721151 for us med is where Arden gets her Dexcom and Omni pod supplies from and they have much more US med.com forward slash juice box, head over now get your free benefits check and get started with us med us med.com forward slash juice box.

Sheila 2:02
My name is Sheila and I have had type one diabetes since 1967.

Scott Benner 2:11
Sheila, you almost made me curse right away.

Sheila 2:16
Well, I know you've had other people on that have had it as long as I have. But you know, initially that was my goal. And coming on here. I wanted to basically, you know for newer people say you can do it. You can live a great life.

Scott Benner 2:32
Have you lived a great life? I have. How do you measure that,

Sheila 2:37
you know, had a wonderful childhood and did anything the other kids did and went to college and had a great career in software. Married a wonderful man had two absolutely wonderful children. And yeah, it's a great life.

Scott Benner 2:59
That sounds good. Two minutes for sure. What is the biggest difference between having diabetes now and having it 56 years ago? And how old are you? I'm sorry to task.

Sheila 3:09
I am 6161. So

Scott Benner 3:10
you got diabetes when you're five about? What's What's the biggest shift from the earliest you can remember to now

Sheila 3:19
Oh, it's completely different. I mean, when when I was diagnosed, I know they they told my parents, you know, I had a very specific diet. And I remember you know, getting the exact same breakfast and the exact same lunch and just measuring very, very carefully. And now you know I can eat almost whatever I want.

Scott Benner 3:50
Oh, what do you have the toughest time Bolus thing for?

Sheila 3:53
Oh, I mean, I love bread I do. But it can be tough. And you know, I'll try to go with like whole grains. I mean, those are easier. But if there's an occasion and as you know white bread, that can be challenging.

Scott Benner 4:10
White bread. Any white bread? Have you ever tried making sure it doesn't have high fructose corn syrup in it?

Sheila 4:16
I have not baked any although I know. I know. I asked for your recipe for pizza. No, I haven't made my own bread, but I have found a brand that you know works very well and that's what we buy.

Scott Benner 4:29
Good. I want to say I don't have a recipe for pizza as much as I use someone's and I'll give them a plug here. Because let me find it for you. It's interesting. It's called. I use a recipe that I found on YouTube by a company called Statler made and they also have a website. It's Staedtler made.com and I make a Neapolitan pizza out of that I usually use their cold fermented recipe and I let My dos said a few days before we use it, and huge shout out to them. It's a it's a great, it's a great easy recipe and then the website puts together you just tell it how many pizzas you want how big you want the balls to be, and it gives you the gives you the breakdown. So Wow, very nice. And it hits easy. That I mean, that was not on purpose. By the way. It's not like I looked at their website and it said, Hey, if you use insulin, our pizza crust recipe might be easy for you. It's just the, I think, between like a thin crust pizza, right? Without a ton of anything in it. I mean, if I'm thinking correctly, that pizza dough has flour, sea salt, yeast, water, that's all it said. And then you know, the way you dress the pizza up really ends up being, you know, the big part of it. So if it's not, you know, cheese isn't dripping everywhere. And if it doesn't make a whole link of sausage on every slice, that kind of stuff. It's it's not too bad to Bolus for. But back then. I mean, I think obviously you were were you boiling needles.

Sheila 6:02
Yes, man.

Scott Benner 6:04
Are you really paying every day to test your blood sugar? Yeah. How long do you think you did that for?

Sheila 6:12
I don't remember. It's interesting. The things I do remember, I remember hearing that the clicking noise of my mother rolling the insulin hitting her wedding ring. Interesting that would make this click, click, click, click, click, click click click in you know, I would hear that. No, I had to go, you know, get my shot. Yeah.

Scott Benner 6:35
It's really like Pavlov's dog with that. And, uh, you know, modern people don't even know what you're talking about that, like they don't roll their insulin before they inject it. They take it out of the out of the refrigerator and go, but you had to it had to get mixed. Right? Like we kind of like mixed back up again. So your mom was just telling like this, and it was hitting her ring. And you remember that?

Sheila 6:56
Yeah, yeah. The noise. And that's something. Yeah. And it's funny. I I've spoken. I mean, my parents passed a number of years ago. But I was asking, I have an older sister. And I was asking her some questions before I came on here. And, and she was telling me that I guess in the very beginning, I did have some seizures. I don't remember any of that.

Scott Benner 7:21
Interesting. So your sister remembers you have to she remember in a traumatic way?

Sheila 7:27
Yeah, I mean, she remembers, you know, my mother, like, struggling to get me to drink juice. And yeah, I mean,

Scott Benner 7:35
did she talk to you about how it felt?

Sheila 7:39
More? She was kind of? No, no, no, the straight answer. Yeah. Just know, when I was asking her questions about, you know what happened back then? I just know, I was diagnosed because at at five I had started wetting the bed.

Scott Benner 7:58
And that's how they figured out to get you to a doctor. Yeah. Is there? Has there been any other type one in your family line?

Sheila 8:04
Yes. And this is interesting. So I have a younger brother. And he has had type one. He was diagnosed when he was around 30. So he's had it for about 25 years. And my older sister, also, just in the past year, was diagnosed as type one. A few years ago, she was misdiagnosed as type two.

Scott Benner 8:34
Wow, how old is she now?

Sheila 8:36
She is 69.

Scott Benner 8:38
Wow, that's a crazy time to be diagnosed. Have you guys been? Have you been helping her with it? Like the three? Or the three of you close? I guess I should ask first. Like,

Sheila 8:46
well, we're close. We're definitely we're all the five of us. We're all very close. But my brother is just kind of like, that's a nice feel. But I'm gonna do my own thing. So okay, that's fine. My sister has been asking questions and, and so yeah, whenever, you know, I'll try to help her out. She's doing pretty well. I'm, I have you know, her Dexcom follow for her on my phone. And yeah, she's doing okay.

Scott Benner 9:18
Did it scare her?

Sheila 9:19
I don't. Only because she knows I've had it all my life. Yeah. I think honestly, she was glad. I mean, when they did put her on insulin, she started to feel better. Because she had been on Metformin and that she really struggled with.

Scott Benner 9:37
Okay, so let me ask you a quick question. Do you work at a prison? Are you letting people in and out of the yard? What is that beeping? Oh, do you hear a beeping?

Sheila 9:45
I do not okay. Doesn't mean anything. My hearing is bad. Why? My hearing is

Scott Benner 9:52
bad. I'm screwing with you. She'll I'm sorry.

Sorry. I know that's fine. But I feel like there's I feel like there's it almost feels like a windows opening. It has an alarm. It's like a door and then it stops. And then it happens a minute or two later. There's nothing in your house that does that. No. Okay. Your pumps not making a noise. It's like muffled or muted or something. No, I just checked it. Okay. All right. Well, listen. You may be putting pulled up to the mothership by UFOs. If you disappear that's where I'm going to assume you went. Oh my god. I tell you, my kids mess with Kelly constantly. Because her hearings okay, but there's something she's gonna be pissed if she hears this one day. I don't remember exactly what it is. But there's something with her hearing with like tones or something like that. So she doesn't hear you right away all the time. And oh, yeah, it's you would think there'd be like a loving support but it's more like an unmerciful mocking. Oh, my gosh, meanwhile, meanwhile, that's a that's not they'll be laughed at like it. As as you watch her, it's tough because people have a do you do this? i My mom does it. My mom's like, I don't know what you would call her death as a doornail. Maybe. And, and she'll do this thing where she? I think it's out of I don't know, honestly, if she's embarrassed, or if she's just trying to not break the flow. But she tries to infer what's going on. Oh, yeah. Yeah. And then and then you end up saying something and people like, What are you talking about? Like, that's not what's being said right now. Do you do that? Or have you thought of it? And?

Sheila 11:42
Well, yeah, oh, yeah. No, I definitely do that. It's not intentional. It's just Yeah, I guess. certain sounds. I mean, I wear hearing aids, but even with the hearing aids, yeah, sometimes I have to guess. Okay. And I don't always get it, right.

Scott Benner 12:00
Like, I think this is what we're talking about. Have you ever gotten into a situation where someone shows up at your home and you're like, why are you here and you've made plans with them and you didn't know or something to that effect? I want to tell you about us med. This is alright. I'm gonna tell you something embarrassing about me. But it's about us med so I'll do it. Okay. I was in the how do I say this? I was on the throne. There. The other day. I was seated in my bathroom. And I got an email. Oh my God, why am I doing this? Alright, it's okay. It's okay. Just okay. Some I'm taking, and I get an email. And I look at it because I don't have anything else go on. And it's from us med. It says, Hold on a second. Give me a second. I'm sorry. You should all get a podcast you know about having to do this. Like, just be so honest. It's alright. Anyway, I'm in the bathroom. greetings card and your next order of supplies is eligible to ship within the next 14 days. Please click the button below and fill out the brief form to confirm your orders. I clicked on confirm my order. I clicked a couple more times. And that was it. It was over. I received another email it said everything was on its way. And then I took care of the rest of my business and I was on my way. And I and I actually thought one well that was actually very convenient and easy. And two, I felt a little productive for getting something extra done while I was in the bathroom. But then I guess the third thing I thought was how am I going to tell the story on the podcast. And here I am. Us med.com forward slash juice box. They carry everything from diabetes testing supplies, CGM. They've got libre two libre three Dexcom G six G seven Omni pod dash Omni pod five, tandem control IQ, the T slim, right? That one they have, they've got what you're looking for. You've got to just go get your benefits check. It's absolutely free. 888-721-1514 or us med.com forward slash juicebox. Then if they take your insurance, you're on your way and they take over 800 private insurance. They also take Medicare nationwide. So your odds of being covered are pretty good. I mean, do I get any points for this? Does anybody or you guys just like why Scott? Just say you're in your car when it happened? I can't I can't lie. All right, the US med always provides 90 days worth of supplies and fast and free shipping. You're gonna get better care and better service from us med there's links in the show notes links at juicebox podcast.com. We use us med they're fantastic us med.com forward slash juicebox.

Sheila 15:08
No, that hasn't happened yet.

Scott Benner 15:11
I'm here for the check Sheila, the what? We're going into business together, don't you remember? I thought I said, I thought I said I would buy cookies from your, from your nephew. Anyway, you know, I just find that you have to be able to. I know, it's it's a trite thing to say, but everything's so serious in life all the time, you know, and it's just easier to to laugh about it a little bit and recognize what it is. And, you know, absolutely not, don't be offended all the time. I did something recently that I haven't figured out how to talk about yet. And I thought I was gonna say it here. And I started to get it out of my mouth. And I was like, I don't know that I'm ready to admit that I've done this. Yeah. So sorry, Sheila, I almost told you a very embarrassing story, and I'm keeping it for another.

Sheila 15:58
Alright, well, maybe by the end of the episode, we'll say, Well, I

Scott Benner 16:00
don't know. We'll say it's a it's a pretty big screw up on my part. So I'm not certain. Anyway, okay. So you, you are in an interesting part of your life where as you've had diabetes for so long, then it's all just a smushed together cloud of loose memories, no different than how I remember myself being five or seven years old, like, which is to say, I don't remember it. And I don't know if younger people can appreciate that, that I don't think I could purposefully tell you a story from a specific time. Until maybe, like, maybe I'm like, I'm 51. Now. Like, maybe I could go back to like being 13 and tell you something that traumatic that happened. And maybe 16 and tell you something that fun that happened. I definitely can remember the first time I have sex. And so she was like, Yeah, I remember that one. And like and stuff like that. But I couldn't sit down and be the person who wrote about my own life, like day to day stuff. I just don't I don't remember any of it.

Sheila 17:06
Right? Yeah, yeah. No, I remember bits and pieces here and there. But I'll tell you one thing that I very much appreciate now is that I think my parents made every effort to treat me the same as my brothers and sisters. Okay. And and that, looking back, for me, that was important.

Scott Benner 17:32
You didn't want to be special. Yeah, nobody wants to

Sheila 17:35
be different. You know, and so as much as possible, they tried to make me feel, you know, like, I was, like everybody else.

Scott Benner 17:44
And that was the that was the group you wanted to belong to the just Oh, my average? No, no, I mean, like, average normal, run of the mill kid. That's the group you want it to be a party to,

Sheila 17:55
right? Yes, definitely. And even so when I was eight years old, and I've heard other people, I think even Jenny said this, but I wanted to go to Girl Scout camp. And I, you know, I asked my mother and she said, No. And I asked again, and she said, No. And then I think I bugged her enough until she said, You know what, we're going to ask the doctor, and we went to the doctor's office. And I was so shocked. I do remember this. He said, If you treat her like an invalid, she's going to become one. Let her go. Whoa, I couldn't believe he was talking to my parents like that.

Scott Benner 18:33
Don't you think to your mom just wanted the doctor to tell you know, right?

Sheila 18:37
Yeah. Yeah, so I learned to take my own shots. I went to Girl Scout camp.

Scott Benner 18:44
Tell people to that story did not happen in black and white. Everything had color on it, right? Yes.

Sheila 18:50
But the thing also that I know and they didn't even say anything to me, but when I when I think back about the situation. There was a nurse at Girl Scout camp, and I don't know if normally there would have been, but there

Scott Benner 19:05
was a wasn't that interesting. A thing you remember. How old do you think you are when you're telling the story about I was eight? Something that from eight years old? You don't remember much else? You do remember wondering? Did they put that nurse here for me? Or was that nurse always going to be here? Well, I

Sheila 19:21
actually at the time, I didn't think about it. But now it was just like, but now looking back. I'm like, oh, okay, I bet they had something to do with that. Well, listen

Scott Benner 19:32
that that lovely person made a nice income during that thing off. If it was for you feel good about that. You're making jobs creating work as you go.

Sheila 19:45
Oh, but it was I mean, oh my god, I just wanted to go to camp so bad. Oh, that was great.

Scott Benner 19:50
Yeah. And that and that's a and that's a happy memory for you something you wanted to do that you thought you weren't allowed to do that. Your mom didn't want you to do that. Luckily the doctor was like letter Do it. And all these years later that whole thing indoors in your mind? Yes, absolutely. I think I'm saying that twice Sheila so that people listening can hear it. That's, that's really interesting. I, I was talking to my wife the other day, this is not a fully formed thought yet. But that I feel like I'm seeing more and more people that want to be special. Like they want to somehow distinguish themselves as different. And that they're willing to. I mean, sometimes it feels like they're willing to just, like throw in with anything, just because it's something other than the normal. And I I'm just really touched by what you said, because what you really wanted was to be normal. Right? Average everyday fit in. And, and now I feel like some people are like, I want to be extraordinary. And you know, and you hear you hear people talk about, I don't know, sometimes you hear people talk about their children or their situations and they try to make it sound like like something extra is happening. I'm like, I don't I don't see this, but okay, and then I think when they label it, they're like, see, I'm this this is special. My kid is this. And that makes that makes them. I don't know, I just I like that. You just wanted to be just like everybody else. Yeah. So you said that you met a man and he was nice. How when did that happen? Is he with us? So?

Sheila 21:28
Ah, oh, yeah. Yeah. You ever killed a man?

Scott Benner 21:33
Are you doing what my wife's doing just slowly. You just ah, well, I don't know. chipping away a little bit at a time. Just

Sheila 21:41
glad. I'll tell you, God love him for everything that I have put him through. My husband. Oh, my God. We met we work together. I think it was 8696 after we started dating up until that point, I didn't have a home glucose tester. And I don't know

Scott Benner 22:04
in 86 You still didn't have one? I didn't

Sheila 22:07
have one did Mike and he bought one for me. Oh,

Scott Benner 22:12
look at that. Yeah. That's so sweet. It's such a weird move. But it worked.

Sheila 22:18
Oh, god. Yeah. But he's just been so Oh, my God, you know, dealing with. So I didn't even get into my other. I'm doing well. But I have a number of health issues. So the first one? Well, I have something called sjogrens syndrome. You know, other people have and have rheumatoid arthritis. And that's fine. But in 2001, I was only 39. And I had a heart attack.

Scott Benner 22:51
Holy crap, Sheila. Yeah, yeah.

Sheila 22:55
And

Scott Benner 22:56
sort of a defibrillator instead of that, that meet her all those years. Wow.

Sheila 23:02
So God bless them. God bless them. I mean, we had to, you know, not super young, but I don't know, seven or nine, seven or nine year old boys. And you know, he was running around taking care of them. And, and taking care of me. And just bless them. You know, he just made everything work. And then this, this is interesting. So maybe two years after the heart attack. Because at the time, I thought, Oh, God, here we go. This is it. You know, diabetes is catching up. I'm just gonna have to deal with it. And then one day, he says, Sheila, did you see the article in the paper about Vioxx, which is a drug that I was taking from my arthritis.

Scott Benner 23:54
Oh, snap show. You got Vioxx. Yes.

Sheila 23:59
Right. Yeah, I had been taking it. And then like, even by the time you saw that article, I had stopped taking it because it really wasn't working. But they took it off the market.

Scott Benner 24:09
It was working it just not working the way they told you. It was going to right. Yeah.

Sheila 24:14
And it's so bizarre, because I felt so happy.

Scott Benner 24:19
Because it wasn't diabetes. It wasn't diabetes. Yeah. So you got good perspective. Hey, did you sue them? No, you didn't get in on that class action lawsuit.

Sheila 24:28
Oh, a lot of people said that to me. No, I did not.

Scott Benner 24:31
In 2007 Merkin company agreed to pay $4.85 billion to settle claims over its arthritis medication. Vioxx, the company faced an estimated 50,000 lawsuits filed by people who experienced serious side effects including heart attacks and strokes after taking Vioxx. This is from drug dangerous.com. And let's just real quick, Sheila. Let's just Let's just do this. Sorry. I'm gonna ask Siri. 4.8 billion divided Buy 50,096 grand you could have got Sheila.

Sheila 25:03
Oh, wow. Well, you could have bought yourself

Scott Benner 25:07
maybe six grand. Oh, my goodness, you could have get yourself a nice summer cottage.

Sheila 25:13
Well he's gonna listen to this.

Scott Benner 25:20
Yeah, at least you could have finally paid him back for that blood glucose meter, which I imagine, was pretty expensive. So, how long were you on Vioxx?

Sheila 25:30
I don't know, maybe a year or two?

Scott Benner 25:33
No kidding. Hey, didn't help with your arthritis at all.

Sheila 25:37
It really didn't.

Scott Benner 25:39
Wait to go, Mark. Oh, okay. So, you say you took it for a couple of years. You got off of it, though? How long? Were you off? How long? Were you off of it before you had a heart attack?

Sheila 25:52
No, I think I was taking it when I had a heart attack. Oh, but then after that, you know, the rheumatologist? And I told them like this, this just isn't working. And so I got off of it.

Scott Benner 26:07
Yeah, no kidding. So what was the severity of the heart attack? Was there lasting damage? Or how was that?

Sheila 26:13
They the way they worded it to us is they said that if I was you know, if my heart was a six cylinder engine, I lost one of the cylinders.

Scott Benner 26:22
Oh, that's not comforting at all. Is it? So?

Sheila 26:25
Well? I mean, okay. But then years after that. I was saying my cardiologist. And he said, and he went into to look for some reason. And he said, Oh, you have collateral vessels. And I said, What's that? And he said, Oh, new new vessels are growing in the damaged area. That's cool. So it was trying to heal. Yeah. So, and I'm good. I mean, my husband and I, I would say five out of seven days a week, we walk for three miles. So I mean, my heart is strong. And yeah,

Scott Benner 27:07
that's a long time ago now to 2000. Let me count 2017. That's 1018 1920 20. That's like 16 years ago. Yeah. Does it scare you though? Do you think about it?

Sheila 27:18
Well, yeah. Because I mean, in all honesty, I have had other heart incidents, even after that.

Scott Benner 27:24
What does that mean? arrhythmias? Well, I

Sheila 27:28
had to get stents. No, no arrhythmias, but I've had blockages blockages, and I did have to have a bypass.

Scott Benner 27:35
Do they put you on cholesterol medication? Yes. Are you on blood thinners? Yes. Does it make people uncomfortable when they're listening when it sounds like I know what I'm talking about sometimes, probably. So you think they're like the idiot? Now all of a sudden he rattles things off. Like he knows stuff. But earlier, he was giggling about something. That's right. I'm a paradox. Silla. No, no, I

Sheila 27:55
mean, no, you you, you always, you know, kind of play yourself down, but you're very sharp.

Scott Benner 28:02
Stop and chill. I'm a big moron. Now, let's keep bumping the walls all the time. And I always I'm like, who am I? Actually, you have no idea. There are days when I'm like, I can't believe I got dressed myself. Although I did. I don't want to say too much. I don't want to say today's show. That's not good news for podcasting. Maybe at the end, like you said, but they're not. Are they saying that the heart stuff is from the Vioxx. Are they saying it's from diabetes?

Sheila 28:35
Well, I mean, they're not. I'm not asking the question and then not saying why. But you know, I'm sure. Like I said, you know, I didn't, I didn't even test my blood. Until, what was it? 1986 or 87, whatever doing? Probably 86.

Scott Benner 28:52
How can you? Let's dig into that for half a second. So blood glucose meters were available, but they were really big, right? They were literally the size of like a red brick, maybe even bigger than that. And they were expensive. And not a lot of people had them in their homes. So were you still paying on strips. You

Sheila 29:11
know, at that point in my 20s. I don't know how much testing I was doing at all.

Scott Benner 29:16
Were you taking like you still doing cloudgen mph or had you gotten into like, what would it have been that were you like, when did Lantus Lantus maybe.

Sheila 29:25
So at the same time, when I met Dan, I had been taking mph and regular and then apply. The doctor that I had at the time said, Hey, there's this new humulus insulin.

Scott Benner 29:41
Oh, okay. Yeah, I skipped over that whole level. Lantus was until like, 2000. So okay,

Sheila 29:46
okay. Yeah, but the thing that happened with that, the short story is I had the first time I tried it, I had an allergic reaction. So I had to stop. So I went back to NPH and regular are. And then later, I don't remember what year but at one point, my doctor said, Sheila, that they're talking about taking these off the market. And he said, I want you to try again. Just just to be sure. And then the second time I didn't have the reaction.

Scott Benner 30:18
She'll I gotta tell you, part of me doesn't understand how you're alive. Well. I mean, that's like you just said to my 20s I don't really know how much I was. So you were in college? What were you getting a degree in, by the way? Computer Science, and you weren't testing your blood sugar? Really? So you weren't peeing on the strips anymore? Doing anything? And were you just taking insulin morning and night?

Sheila 30:40
Yeah, I was taking insulin and, and I didn't see this as the other thing. That's crazy. It's amazing. I'm alive, because I never got a lot of training about what I should be eating. And basically, I avoided sugar. And I was very good. You know, I was a good girl. I mean, I did not eat any sweets, no cookies. But at the same time, like, I would eat a bag of potato chips. Like it was nothing. You know, and I didn't know anything about carbs. Until my pregnant my first pregnancy in 9091. I, you know, the doctor said, I want you to go to Jocelyn. And they gave me some training. And then I knew about carb counting, but I was. I am very lucky to be alive.

Scott Benner 31:32
Yeah, I mean, it's just like, at what point? I mean, because this guy, he I mean, it's not it wasn't like a gift. It wasn't like, here's flowers in a meter. So he's your husband sees that you're, I'm assuming, right? If I asked him, he'd say he saw that you weren't really taking care of yourself. And he got you a meter?

Sheila 31:50
Well, I think not so much that I wasn't taking care of myself, but more. It's like, Hey, did you know these things even exist?

Scott Benner 32:00
Oh, like it's a new thing. Like when my dad bought us a VCR? When he was like, Oh my God, you see this thing? We can watch a movie in the house now? Like that kind of? Yeah. Is that different? No.

Sheila 32:10
Yeah. Because back then, the other thing and this, you know, I've heard over, I've listened to all your episodes. And people say this. I mean, it's not like a doctor ever said to me, you should have a meter. Right? Because I was fortunate enough. I had, you know, good. Software job. I could have bought myself one. I don't think I knew they were out there. Okay. But Dana, and you know, it was like, oh, boy, this girl, you know, I mean, he must have done some reading. I'm sure he did. Knowing him. He wanted to know more about diabetes. And he saw that these things existed and he bought me one. And back then when he bought it, I am absolutely positive. It cost a good amount of money.

Scott Benner 32:54
Yeah, he was trying to get your parents to show 100% 100% Oh, you're not a cheap date at all. Sheila. You're like, I want medical equipment. I need medical devices if you're even gonna knock on the door and say hello.

Sheila 33:14
No, he was thought he was very caring. And the other thing is, around that same time, he bought me a cell phone.

Scott Benner 33:22
This guy working. Looking

Sheila 33:25
at and and this again was way back. You know, when I at the time, I didn't know anybody who had a cell phone.

Scott Benner 33:33
Oh, would you call your husband kind of like a tech forward person? Oh, absolutely. Is this the same cell phone I had, it was in a black canvas bag and it plugged into your cigarette lighter in your car.

Sheila 33:43
It might have I don't. God, I don't even remember. I just know what the time he gave it to me. And I was like, Damn, that's so sweet. And I was thinking, what am I going to do with this? And I just, I clearly wasn't very forward thinking. And it was just it seems so odd because I didn't know anybody who had one

Scott Benner 34:04
and the expense. Do you remember was dollar a minute, if you remember to be $1 a minute to make a phone call.

Sheila 34:10
And of course, I didn't even know that because he was paying for it.

Scott Benner 34:13
And that was an 89 When I'm talking about 8889 90 Right in there right around the time. Yeah, we had bag phones that we got for how do we get them? Oh, my God. Friend of mine was a cop. There was a special deal. They were given the police and I got in on it. I got a free bag phone. And then it came with this thing. It was like $1 so you barely used it. Like you know how now everybody's just constantly on their phone. I tell you what if it costs $1 A minute that's slow everybody down.

Speaker 1 34:42
You want to fix you want to fix people's cell phone addiction start charging them like that. But But yeah, it was $1 minutes, make a call you would use it in really, really, really specific situations. And if people started chatting,

Sheila 34:57
or wanted to know like if I was running or later something you know, he wanted me to call he worried about he still does. He's just very concerned anyone to make sure I was okay.

Scott Benner 35:09
That's beautiful. All right, nice. And he was doing well. He's got this meter I would have married him just because I thought he had money. Right? He had money and he was like buying phones. I would have been like, this guy's got it together. Did he hold it together? By the way? Are you? Are you supporting him?

Sheila 35:23
No. Yeah, no, he's he. Both of us software at the time was a great career to get into. And he's doing well.

Scott Benner 35:34
Good. Good. That's wonderful. Surgeon surgeons, how do you say that? Sir? It's so G. Why would you put a J after an o o sjogrens? sjogrens. Okay, how does that impact your life?

Sheila 35:46
Well, the main thing. I mean, for me, it's dry eyes, dry skin. So it's just annoying. But it also causes for women, your there's a higher incidence of your children having something called Congenital heart block, really. And that did in fact, happen with us. No kidding. And this is another thing that I have a little story I wanted to tell because, yeah, when, when I was 18 weeks pregnant with our second son, I went just for my regular appointment. And they listened and they could tell, and I could hear at all. So there was something wrong with his heart, he didn't have a normal heartbeat. So the doctor, you know, she she told me what she thought and made an appointment at the children's hospital with a pediatric electro cardiologist. And he explained it to me. And then of course, I made the mistake everybody makes Google was available back then, or some kind of search engine. And, and, you know, I looked at it and it did not sound good. And I said, Oh, God, I said, Do Do you have any patients? You know, whatever trial that's doing okay with this condition, and any gave me the name of a woman. And I called and this 11 year old voice answers. And and I said, you know, I'm calling Dr. Dr. Walsh gave me your number. Can I please speak with your mother? My baby has heart block. And she goes, Oh, it's fine. She's like, Oh, I you know, I play soccer. And I just, I have to stay away from the microwave. But, you know, she's, she's just like, babbling on. And she did hand me off to her mother. But she sounded great. Yeah.

Scott Benner 38:00
And that made you feel better, and then they were able to help your son.

Sheila 38:03
And yes, and he's doing great. I mean, he had to get, so he has a pacemaker. And he got his first one when he was five. And then before that, he was just when, before he got the pacemaker, if he like went to run around or extend themselves in any way, his heart rate would not speed up. So he would just get very tired. So most of the time, you know, everybody, people would make comments to me about how well behaved my son was.

Scott Benner 38:38
Just he's in a coma. Yeah, he's not well behaved, but don't worry. Yeah.

Sheila 38:43
Certain color or whatever. And, and then, when he had the surgery, I had bought this is back when people you know, it was the big cartridge movies. Cartridges when you went to Blockbuster. Oh,

Scott Benner 38:57
like VHS? Yes. Yes. Yeah. So I

Sheila 39:00
rented because they told me I rented a bunch of them. And we brought him home from the hospital. And he had never had energy. And he was bouncing off the walls. And just running around and jumping. And it was just oh my god.

Scott Benner 39:17
That was nice. Right? It just to see that happen? Yeah. And

Sheila 39:20
he was fortunate. I guess a lot of kids that have this condition. They have multiple heart problems. Okay. But he just has this one. So I mean, he's, he's 29. Now. He's doing great.

Scott Benner 39:36
Now, do his children have a chance of getting it or No, it's because you had sjogrens? No, it's because of my sjogrens. I'm going to read congenital heart block is a rare complication of pregnancy associated with children's disease that may result in death or of the fetus or infant or the need for pacing and the newborn at a later stage. So that's what happened and got a patient. Yeah, you know, I have to tell you, when you first started saying this, you said something like that. You were telling me what the effects of sjogrens was, and you said, but in women and I'm like, Oh, she's gonna say something dirty and then you and I almost I almost made a dumb joke to like, get ready for it. And then I'm like, No, let's wait and hear what she says. And then the next thing you said was my son has a congenital and I was like, Thank God I didn't do that. Because that's part of I put my foot in my mouth earlier about a thing that I didn't want to tell you about yet that I'm warming up to explaining but still anyway. Well, that's and so that's his does he have any autoimmune stuff?

Sheila 40:36
No. The only thing that's kind of weird though, is we are both very sensitive to sunlight. And I don't know that that's autoimmune. But absolutely the two of us if we walk out of a building into the sunshine, we start sneezing.

Scott Benner 40:53
sneezing, yeah. Oh, yeah. Oh, second. The sensation of sneezing when you see the sun is called Photo sneeze reflex. photic means light. Yeah, thanks a lot. photic means like, Thank you, internet. I'm a bigot. It literally means reflex. Scientists have given it another name V. Always some no autosomal dominant, compelling Helio Omnipod what up? Why are smart people stupid? Why you want to give something a name? With five words in it? I can't say. And then they call I see why were first for short. It's a choo ACH. Oh, all right. I take that back. Well done smart people. That's funny. Yeah. It but is it hold on is a can't be autoimmune. Right? That can't be

Sheila 41:45
well, you know, I don't know. But um, because the other okay. So the other thing I forgot about is so I have anemia. But it is not due to lack of iron. Was it I have autoimmune anemia? Get out

Scott Benner 42:05
of here. Haha. So second at HSU. I don't see with autoimmune. And if nobody's googling that it doesn't exist. And now you're saying you have anemia. But it's autoimmune. You know, I I was lined up with a hematologist yesterday and he had to bail because his wife's having a baby or something like that. Oh, yeah. So I'm gonna have to get him back. To do an autoimmune hemolytic anemia. AIHA is a rare immune disorder. Well, Sheila, you're piling them up here. It happens when your body mistakes red blood cells as foreign substances and attacks them. Oh, so you have it in your body like kills? The treatments include medication surgery, or in rare cases of blood transfusion, right? Highly manageable but fatal if left untreated. So how do you treat that first of all?

Sheila 42:56
Well, right now I'm actually not. In the past, I was taking something called epogen that they give to cancer patients. And it worked. And I felt great. And then again, my husband says, Sheila, did you see this article?

Scott Benner 43:19
This guy? How come this guy is always figuring stuff out African.

Sheila 43:24
These are all from the Wall Street Journal, but he reads it. And yeah, there was an article about again, heart issues with epogen. So I just made the decision I would rather be kind of tired, then then worry more about my heart.

Scott Benner 43:43
Anemia drug made billions but at what cost Washington Post 2012. So, taking iron doesn't help, you know, because it's killing the cells, right cells have plenty of iron. Have you tried a blood transfusion?

Sheila 43:59
I have had blood transfusions. But most of the time, I just kind of hover at a I mean, I forget the numbers off the top, honestly, but they've been the same for years. And I'm lower than what they want for people. But I can function. So we just kind of keep an eye on it. Okay, now when? So, are you ready? Yep. Okay. In 2020 At the beginning of it, I was diagnosed with cancer. What the fuck?

Scott Benner 44:35
Are you serious? Yeah, God, you weren't enough? How in the hell Why is it always you? Why is it always people like you who come on here and tell me I've lived a good life. And then at the end of the hour, I feel like Rocky at the end of the movie when I lost like why? But I have

Sheila 44:57
lived a great life and I was very lucky. So a couple of things. I'm going to say this one right out loud. They found it in my just regularly scheduled mammogram. So ladies, get those mammograms. Because I, you know, I never would have known. I went, they found it. You know, I had the surgery and then because it was a rare type of cancer also. So they removed the cancer and then I did chemo, which as a diabetic is challenging. Because they they have, as part of the chemo, they put steroids in it.

Scott Benner 45:36
Now your blood sugar was a problem. Yeah.

Sheila 45:39
But I actually I did pretty well. So I was able to handle that. But they were, you know, watching my blood while I was getting the chemo. And I had to have infusions with every round.

Scott Benner 45:53
Yeah, to keep it up. What kind of cancer was the show? You said it was rare?

Sheila 45:58
I had it's called triple negative breast cancer.

Scott Benner 46:02
Triple negative breast cancer. Yeah. found during a mammogram. Yep. Anything? Is that a family thing? Other people with breast cancer your life?

Sheila 46:14
I have a cousin but no other types of cancer. My dad had skin cancer. And and I have another cousin who had pancreatic cancer.

Scott Benner 46:31
Is that a mastectomy?

Sheila 46:31
Did you get no lumpectomy? lobectomy? Yeah. But the good thing is I did get the testing that they do to find out if basically if you're going to pass it on to your children. And that was all negative.

Scott Benner 46:47
Good. Oh, that's good. Yeah, yeah. Oh, now I'm gonna have to tell you my story. Okay. All right. I'm looking forward. No, I feel like an ass already. Hold on a second. This needs a tiny bit of context. Okay, because it'll make me seem I don't know. It's not gonna help. But let me just, it'll make me more comfortable. So I needed a new monitor to make the podcast with I'm looking at it right now. I found one online, was going to take too long to get I found one locally, not that local, like 45 minutes from my house, but I had to go get it. So I worked a full day I did two recordings. I made dinner, I took care of my life. And then I said to my wife, I'm going to rush to this place and try to get there before it closes. So I pulling up, and no lie. The kids out front pulling down the metal door. I parked my car and I jumped out I walked up to him and I was like, Brother, listen, I drove like an hour to get here. I know exactly what I'm buying. I'll be out of here in five minutes. I have a credit card even like, like there'll be no mess. Like he needs like a guy come in. I came in. I'm looking around where the monitors are. I don't see it. There's a kid. There's like, Can I help you? I said, I'm looking for this monitor. I told him the brand and everything. He goes, Oh, absolutely. I have that as a great. And he goes, I'll just bring it up front for you. You can go head up and I was like, oh, okay, but then I got kind of like sidelined. I was looking at something else as I was walking up. And so he comes out with a monitor. I'm not to the front. So he says why don't you just come over here to this little kiosk? And I'll bring you out here. And I said, Oh, that's so nice. Because it was like a line up front. And I was like, Oh, thank you. And as we come up, this tiny little kiosk has two places to bring people up. And I sort of came around the back of these two women. So they did not see me coming. And when I settled in at the kiosk where the kid put the monitor down. One woman was seated, but the other one was standing. And the woman that was standing was startled, I think because I came from behind her. And I just looked up at her and I was like, I'm sorry. And she goes no, no, I'm sorry. And she starts to back away from me. And I'm like, now I'm like, oh, what's happening? Like, why is she backing away? Why is she sorry? Like, you know, and then she looks at who I realized later is her mother, an older woman probably in her 60s. And the woman on the other woman's the standing woman is I don't know, she's probably in her 40s. And she the mother is like, it's okay. And she goes no, like, you know, he might not want me near him for health reasons. And then I realized she was wearing a mask and I thought, Oh, she's just nervous about COVID still. And I'm not thinking I want to be clear. I had worked all day. I just driven an hour. I was hungry. I was tired. And I tried to be funny, and not even on purpose. It just came out like I was getting my credit card out. I'm looking at the kid who's bringing me up. And I said it's okay. It's not like I have cancer or anything. Oh, and there's a pause Sheila. Oh, she goes, I have breast cancer. And the voice in my head. No, a lot of the rest of the story is the voice in my head. The voice in my head goes mother. And then and then and then and then the voice in my head goes dum dum dum. And then I look up at the kid that's helping me he's like 19 Here's the look on his face. Oh, what the fuck did you do? And like say So he's looking at me like that the voice in my head is saying the same thing. And I just bear down, and I could hear my voice go, Well, Scott, you think you're gonna talk to people? Now's a good time to prove it. And I turned and I faced her. And I said, I'm really sorry to hear that. And I didn't mean to be flippant like that. I apologize. What kind of cancer do you have? And she said, I have breast cancer. I'm about to have my breasts removed this week later, that's, I'm having a surgery. And I said, I'm glad they caught it in time. Are you okay with all that? And she said, Yeah, I'm pretty comfortable about what's going to happen. I feel good about it. And I said, Are you thinking about getting reconstruction afterwards? And she said, No, I don't think so. I've toyed with the idea of maybe doing some tattooing, but I don't think I'm gonna get an implant. And then she and I had a very real conversation. And then her mother got involved in it. And we talked some more. And I said, Well, I don't these is not an apples to apples comparison. I said, But my mother just beat cancer this year. She was at she had a huge tumor on her ovary and a couple of other places. She had a full hysterectomy. And then the mom's like, I had a full hysterectomy. That's a hard thing to bounce back from. We talked about my mom. And by the time it got all done, I said, I'm sorry, what's your name? She told me her name. i She asked my name. I told her my name. And we had had a really lovely five or six minute conversation. And I turned back to the kid at the register. And I made eye contact with them. And with my eyes. This is what I said, Sheila, I said, You I did it. Because he now he's looking at me. Like, how did you do that? And I was like, I talked to people for a living friend. And so I and so that I paid him. And I turned I just ignored him, like be clear, the transaction stopped. Because I was like, first of all being serious. I was like, What the hell did I just do? You know what I mean? Like, I don't want this lady to feel bad. I wish I just picked the biggest thing I could think of would that would be a reason why you wouldn't want someone near you during a pandemic. I could have said anything. I wasn't thinking. And normally, this is not how I would have acted in public. I think it was just all the rushing around and silliness. And anyway, not the point. So it turned back to her and we wished each other well. And as I was getting ready to leave, she said, You're such a lovely person. And I said, thank you. And she goes, I'm really glad we had this conversation. I feel better. I was like, Oh, thank you very much. And I said, I am very sorry about my joke earlier, that led to this conversation. But I'm glad that we talked. And she said me too, when the mother waved goodbye to me. And as I was walking away, I heard the mom say he was so nice. And I thought sure, like, I don't know, like whatever the noises for wiping your brow and throwing a lot of flopsweat aside because I felt like a dick Sheila,

Sheila 52:51
like, oh, no, no. I mean, no, that's we were very nice. And, and people do make that comment. I mean, you know, a lot of times in life, they'll say, well, but don't cancel, you know, I mean, but that's not

Scott Benner 53:05
usually how I roll in public. You know what I mean? At the very least, that was not indicative of how I am in public. Like, I'm not a person, I'm not a podcast host when I'm walking around a store buying a monitor, do you know what I mean? Like I was just trying to get in and out of there. And it just it was the whole interaction. It was how it was how oddly, she was shocked by my presence, and how she was suddenly worried about my health. And I don't know, like, my brain just went to the biggest thing, like, Don't worry, it's, it's not like I have, and then that word came out of my mouth. And I felt hurt. I feel bad about it now, as I'm telling you the story. But I also I also was very impressed with my ability to turn it around. Because, and you know, what I, you know, what I give a lot of credit to, I want to thank the people, it's talking to people online, like, like, it really has helped me to know how to streamline a conversation. So that so that you can have a reasonable back and forth with people and stay out of the weeds and stay out of the arguments, there is a way to talk to anybody about anything. And I and I actually am telling the story, not because I'm proud of it, because I'm, I'm embarrassed. But because I think it really proves that communication is possible anywhere because I put myself in about the deepest hole as I possibly could in that moment. And we still got to a good place and rather quick. So and, you know, and kudos to her for not just like kicking me in the balls, which is probably what she should have done. You know, they seriously she probably should have just said fuck you and hit me with something. But, but I just, I don't know, it was it was really interesting, how quickly we were able to get on a personal level like to strangers and I had a lot of empathy for obviously, and I think some of that comes from talking to people to like understanding more deeply what that means not just hearing like, Oh, I'm having breast cancer. And then but having spoken to a person like you for example and and having deeper content Anyway, if that person ever hears this, I am genuinely sorry about that. And but I thought it was worth mentioning here.

Sheila 55:06
Yeah, no, that's a good story.

Scott Benner 55:09
It's a good story. I didn't tell my wife for two days. Because I was like, I knew she was going to be like, You're a moron. I know, that's how she was gonna start.

Sheila 55:21
I mean, you handled it, you handled it wonderfully. And, and, you know, that's what people should do. I mean, that's a it's a good example for everyone. Well,

Scott Benner 55:30
I handled it wonderfully after I made the problem. So we all make mistakes. Thank you that I appreciate it. Because that was a big one. I mean, honestly, I wish you could have in the first 10 seconds heard the thoughts in my head. Like, I was like, You, idiot. Like, why that? Why anything? Why not just smile and say, Thank you, like, why did you like and Oh, my God, anyway, is there I got the car afterwards, I just sat there for a second. I was like, Oh, my God, I am so stupid. And I felt bad for her. And, you know, like the whole thing. But I got out of there. And I'm hoping she's, well, it sounds like she had a good plan. And she was going to a good institution. And I think she will probably make out pretty well, based on her her example or description of what's going on. So anyway, knock on wood for her. Okay, she was sorry. See why I didn't want to tell that. AAA actually,

Sheila 56:29
I think it's a good. I mean, it's a great story. It says a lot about you, because you are very, very good at you know, talking and relating to people

Scott Benner 56:41
use the all my talking skills in that moment. Because I just I had to, I had to speak next, right? I had put her in this awkward situation. It was on me to fix it. And I was pretty, but I was pretty sure that the next thing I said had to move us in a different direction. Like I didn't even want to start with a like, you know, like, oh my god, I'm sorry, because I felt like I would have been apologizing for her breast cancer, which I was. Oddly, that's not how I felt I was apologizing for my ridiculousness. And then it was funny, I think just making the podcast and maybe me being who I am, in some way blended. I was immediately interested in her story then. And I thought that that would probably be the most comforting to her is to just be able to verbalize what had happened to her. And so we I just I basically interviewed her in a store for like four minutes. Wow. And it was and it seemed like it she was grateful to talk about it with somebody made her really comfortable. And then we joked a little bit about my mom with with her mother and, and then she got to talk about our mom and how proud she was of her. And it was really nice, honestly, just started very poorly. Anyway, I won't be doing that again anytime soon. That was, you know, if you said you've learned you've heard this podcast, if you remember me telling the story of when I was 20. And my friends betting me that you couldn't say anything to a stranger and get away with it. You ever heard that story?

Sheila 58:09
I listened to it sounds vaguely familiar. I've listened to all of them. But I don't know if

Scott Benner 58:14
it's a lot. I don't remember all of them either. Yeah, my my buddies and I were sitting in a diner, like in the middle of the night one night, doing what kids do like talking about the world and everything. And I made the assertion that I thought you could say anything if you said it the right way. And they bet me like $20 that I couldn't. And then gave me a very, very bad word to say to the waitress. And I had to try to work it into conversation in a way that would leave the person. Comfortable still. And I failed. I failed miserably the first time. Like to the point where I think I lost the $20 in the tip later, I was like here, sorry. And then we explained it to the person. We were like, look, we were it's a thought exercise and it was dominant. We're sorry. But eventually, I did get to that point. And now like one of the nicest things people say to me is like I had somebody told me one time like you could tell me my dog died. And I think I'd thank you when it was over. And I was like, Oh, thank you. I do pride myself on being able to speak to people. So anyway, has a lot of story about nothing. And I'm sure most of the people listening now are like making pitchforks and like things to burn on my front. Because it was terrible. But a lot, a lot of good came out of it afterwards. So I'm gonna call it a wash at least. What else? Sheila? Like, I mean, you just keep saying things like did your head fall off ever or anything like that?

Sheila 59:40
But actually, alright, so I have one thing that I wanted to get in on the podcast, and what brought me to listening to the podcast. So at some point in my 40s my endo said You know, you get a metal if you have diabetes for 50 years And I thought, really, I thought, wow, damn, I want to I want to get that right. And then I started when it was getting close, and I was about to get the medal. Couple of friends said, you know, surely you should write a book. And, and so I thought I, you know, maybe I will. And I thought first I'm going to look and see what's out there already.

Scott Benner 1:00:21
What do you find? I,

Sheila 1:00:22
I had never really said to myself, gee, could you be doing this better? Like, I was just living life, you know, working, I got my kids everything else. So I, you know, I started looking around. And I found all these books, you know, and I read, I read a bunch of them, I read, you know, sugar surfing, and I read things like a pancreas and, you know, bright spots and landmines and, and then I started, you know, finding, you know, Googling around. And I found stuff on Facebook, and I found the podcast. So, up until then, like my a one sees would be like, in the sevens. And, and my doctor would be, you're doing great. You're, that's beautiful. That's great. And they never even said, but you could be doing better. So since I started listening to the podcast, now, my agencies are in the fives.

Scott Benner 1:01:28
Wow. I appreciate you holding that story until after I told my terrible story, because it makes me seem better. And maybe it'll get people to cut me a little bit of a break on the

Sheila 1:01:39
I mean, this podcast is just wonderful.

Scott Benner 1:01:43
I'm glad. That's that's, that's really terrific to hear. I actually found an article online. Have you celebrating your 50 year Willie medal? Oh, yeah. That's really, that's beautiful. Do they still do that? Yeah, you can still get a lovely medal. That's excellent. Oh, yeah. Tell me a little bit about. So you, you mentioned three books that I I'm just gonna admit I've never read. But I've have I've had two of the three authors on and in. And I've heard nothing but great things about them. But what was the difference between reading a book and listening to the show? Like, how was one thing? I mean, how did it strike you? Like the anatomy? Like why did one thing get to? And the other thing too?

Sheila 1:02:27
Well, I mean, the books definitely, you know, they were good. And they had information. And I did, you know, get little pearls of wisdom from those. But I think with the podcast, and especially over time, like, there would be topics that you covered, you know, early on, like in the, you know, 100 200. But then, like later episodes where they would be revisited and like really going into more depth. And then also just the all the stories that people would tell, you know, almost every episode, there's some pearls of wisdom. Somebody says something, and I think, Oh, I didn't know that. Or oh, I could do that. I could try that. You know, and it just all adds up?

Scott Benner 1:03:17
Yeah, I think so the repetition is valuable. It's hearing it and building on top of it. That's valuable. Is it being spoken even better for you? Yes. Yeah, I think so too. I, somebody asked me, a publisher asked me to write a diabetes book wants I should not say this out loud, because people are always like, Scott wrote a book about diabetes, but I just don't think it's as valuable use of my time. Because I think then you put an idea down, and it's and it's stagnant then, and you can't you can't build on it. You can't like in the Pro Tip series, there's the bump and knowledge episode. And when I made it, I thought, that's good. That's perfect, that does what it needs to do. And then I watch people online, and once in a while I would hear people like I could see that in their management. They were bumping and nudging too much. And I would go say to them, Hey, look, you know, if you find yourself always making adjustments, your core settings are probably off, like you shouldn't have to be adjusting this often. And then I went back and listened to the bumper nudge episode, and I was like, Ah, I never said that in there. And, you know, you can think, well, we should have. But I think what people might not understand about the podcast, and maybe why it works in the way you just described, is because that when Jenny and I sat down that day to make a bump and nudge episode, we sat down with two words in front of us bump and nudge. And in fairness to Jenny, those aren't even diabetes terms. And so we started talking and having a conversation about it. And it's not like I don't know what you all imagine. It's not like I have a bullet list here of things I meant to talk about. So I just let the conversation take me where it does, even when we're doing the management stuff. So I was like one day I'm like, Well, this needs an appt As I need to add more context to this, and we made a bump and nudge to I call Jen, you know, I said to Jenny, hey, next time we record, I want to make an update to the bump and nudge episode, because I'm seeing people online say this thing. And I feel like they need more context. Now, I don't know if the people online who said that actually heard the bumper nudge episode, right? All I can tell you is that the information I'm putting out, it needed this addendum. And I only knew that by putting it out, and then watching people react. And and saying, Okay, well, I'm still seeing these questions in the world. We should address those questions, too. You can't do that with a book. Yeah, me. You can keep rewriting it. But I'm not gonna go back and keep rereading it. You don't I mean, like, if I added a chapter to a book, you're not gonna she'll she'll doesn't get a notification or house. It's like, Oh, they've added a chapter to a book I've liked. I'll go back and reread the entire book. That doesn't happen. And this is contextually is easier just shows up in your app, and you spend an hour doing the dishes and listening to me tell horrible stories about things I've done apparently at a store. And, and somewhere in there. Here's something that helps you. And, yeah, the format works. Yes, definitely. Yeah. It's and it's his dumb luck. Right. I mean, we talked earlier about a cell phone in a bag that costs across the dollar to us. I mean, it didn't have data. I don't know. I'm gonna look up a bag phone right now and see if I can figure it out. Yeah, there it is. I

Sheila 1:06:26
know. It was just, you know, just a phone call. No, nothing. Yeah, nothing, no internet access.

Scott Benner 1:06:35
Yeah. And so the point is that that technology came along. And I think what 2000 2006 Or seven, the iPhone. And when it came out, people didn't even know what to do with it. It didn't do anything. That's why the App Store is so important that people now would understand that. But back then, the phone came with a calculator. It came with email, it didn't even come with email, like it basically didn't do anything you could get on the internet, it was super slow. But adding, you know, beefing up cellphone towers, and making the signals faster, and allowing third parties to make apps. That's how you get a podcast. And then that happened. And then the world shifted away from reading, which made me shift away from blogging, and all these things intersected to you at you know, in your 60s, which is, by the way, pretty cool that you found a podcast and saying that my a one season the fives now and I could make a point that you're a one season the fives now because cell phone technology got better or because Apple opened up an app store or any number of reasons that lead to a podcast being a real thing.

Sheila 1:07:46
But But no, absolutely. The the pot. I mean, those things helped you to do the podcast. But the podcast has helped me.

Scott Benner 1:07:57
Yeah, Sheila, listen, I'm terrific. But I don't have a leg to stand on right now after telling that story. So I can't talk about that. I can't really, at this point, there are people calling the police on me. They're like, Did you hear what he did do something. But no, I appreciate that very much. It's, it's, it's the other part of it. Like I talk about it sometimes. But it's just being able to communicate, it's not something everyone can do. And I didn't even know that. It's funny how these stories kind of coalesce once you start telling them. But when I wrote my book, I did write a book. It wasn't about diabetes was about being a stay at home dad. Yeah. And I would go out and do media for it. And did one. And I think it's pretty clear. Like, if you've ever done business with me, you're doing business with like, this energetic version of Scott, I don't have an ability to act professional. And so my book publisher got an interview for me. I went and did it. And it came out. And she called me actually to have them call me. And they were like, You were terrific. And I was like, I don't know what you're talking about. She's like in the interview are amazing. And I was like, I definitely wasn't amazing. I just guy asked me some questions. I answered them, I talked a little. And she said, she starts then talking to the other publisher, we're on a three way call. And I'm now suddenly not part of it. They're talking about me in front of me. And the guy says, it's because he's not really an author. And I was like, I was like, Oh, this feels insulting. where's this going? And then they started saying to me that people who write books are generally speaking great at writing, but they're not terribly good at talking. And I didn't and as a general rule, and he's like, and he's like, this is working because he's not really a writer. Like he's, he's not a person who lives in his head and like, you know, like that kind of stuff. So I started doing more and more interviews, and I just having a good time, and it was going well, and everybody's probably heard the story about eventually I ended up on the Katie Couric show When she's like, you're good at talking to people, and I made a podcast, etc. But I heard someone just the other day described if you ever heard of Huberman labs, who are is that how you say it? It's a really popular podcast right now. Oh, yeah, no, I'm, it doesn't matter, it's Huberman lab. And the guy that's on the episode is just naturally, a good communicator. But he happens to also have a lot of knowledge about the things they're talking about. And I think that every once in a while, you get a mix of somebody who understands the thing, and can talk about it. And that's, that's where the value comes in. And I for whatever reason, I'm good at that. In regards to diabetes gifts, absolutely. just dumb luck, Sheila, that's all the same reason you're still alive, by the way.

Sheila 1:10:50
I mean, you probably added years onto my life.

Scott Benner 1:10:53
Well, I was gonna say dumb luck. But yeah, like, just doing better. Do you feel better? Do you like that difference between a seven a one C and a five? Is there like, noticeable difference?

Sheila 1:11:03
Well, I feel good. I mean, I do. I look at I don't know if you probably know this, but I mean, there are type ones that, you know, are out there that have had it for like, 85 years. Like this is starting to happen. Yeah. And, and I look at them, and I say, you know, all right. That's, that's my next goal. And I, you know, and I might make it.

Scott Benner 1:11:30
Yeah, damn, right. You might, I mean, hell, you're still alive. After all this? I think you're, it's the same way I think about my mom. So my mom, you know, people are kind of following along 79 years old, looks like literally looks like she's about to die. Can't get a diagnosis right away, we finally get one next thing. You know, doctors don't want to do surgery. You're so old. It's not going to work, blah, blah, blah. My neighbor's kid grew up to be a surgeon, he hooked me up with a friend who hooked me up with another person. My mom gets the surgery removes the cancer. She spent the next year in chemo. Not fun, you know, with this kind of eye on the prize of moving to where my brother lives. And I'm not gonna lie like we carrot and stick my mom a little bit through chemo. Like if you want to get out there to see Brian mom, like, this is what you got to do today, you know, and she gets the all clear and moves out there. And she's there for three, four months. And the other day, I just out of nowhere. I'm like, I haven't talked to mom and a couple days, then this never happens to me. I talked to my mom like every 48 hours, right? And so I texted my other local brother here. And I was like, Hey, you talked to mom, last couple days? He says no, I don't think so. And so I texted my brother out in Wisconsin. I'm like, something's wrong with mom. And he's like, what? You were just talking to her? I'm like, No, I can't reach her on the phone. Something's wrong. But she lives in a facility meaning that she lived my mom was dead. Someone would have told us we imagine, right? Like so. So I'm, like me, you'll imagine, right? But the more you learn about these facilities, no matter how nice they are, by the way, you wonder what's going on. So I say to my brother, I'm like, you gotta go check on her. He's like, alright, like, you know, so he heads over Friday, two Fridays ago. And he gets there. And my mom's like, out of it, like oh out of it. And he assesses her dresses or takes her right to the emergency room. Oh, my gosh, and sends me a picture of her in a wheelchair slumped over. And he says to me, she was awake five seconds ago. And I was like, get her there. Right, right now like go. So he gets her there. And it seems like she has a UTI. And this kills elderly people, or you have all the craziest things, right? And so they hit her with a ton of antibiotics and five hours later, and they you know, give her a bag of saline. And five hours later, I'm FaceTiming with her and she's like, fresh as a daisy. Hey, what's up? And she's fine. Right? Right. Oh, my God. But the next day she wakes up, she's slurring her words, that something's not right. No energy sleeping the whole day away. And we're like, what is happening? So they do all these scans and everything. And it takes them a day or two to figure out they think she's having a little seizures. And then she's sleeping because they're not not strokes, like seizures. And so she's having little mini seizures, where she kind of goes blank for a second. Then she sleeps for 12 hours. And they're happening pretty frequently. So she's not rebounding ever. So they put her on a couple of seizure medications. And it doesn't get better. And I make the phone call to my kids. I'm like, Hey, I You gotta find time to call grandma in the next 36 hours. I'm not sure she's gonna be okay. And so my kids call or check in on her. My son calls back he says my grandma sounds horrible. Like she's like swallowing her words. Like if she was going to say protein. She'd be like prompter like that, you know, like really like couldn't hold her thoughts. We were asking her questions over and over again. to test her memory from just minutes ago, and it looks like she's sliding off a cliff. And then about four days later, she just calls me. And she's like, Hey, Scott. And I'm like, What's up, mom? Now in the last four days, my mom's throwing trays of food on the ground in the hospital, yelling at people out of her mind, not herself at all. The hospital understands, right. It's not like she wasn't, and she just turns back on. And so the infection gets through her. The medication starts to work. She gets a couple of days of real sleep, and she's just herself and better again. Wow. And I was like, Wow, mom, you're going to live forever. Like, I just, I have now thought twice in 14 months. Everybody call grandma on this is it. And she just bounces back? It's I don't know what it is about her. She's got so many medical issues. And she's at, you know, she'll be at one this summer in August. But I believe it now. Like I think that if you can get some help. And if if you can get some people looking out for you, and a little bit of good luck. You can go for quite some time. You know, yeah, yeah, that's it. But make no mistake, and translate this back to diabetes. If you're listening. If I don't recognize that I hadn't heard from my mom and two days. I don't think she'd be alive because my brother was on. My brother was on the night shift. And he wasn't going to make it there for a couple more days. And the place she's living, you can say, well, they're supposed to take care of her. But these places are not always what you hoped them to be. Right? Yeah. So anyway, we have a meeting coming up with them where I imagine I will be unpleasant. Because people need to do their job. Sheila Don't you think?

Sheila 1:16:48
Yeah, no, you're right. You're right. I think they all you know, the state of the world right now. So many places are short staffed. Yeah. And you know, it's just it makes it very difficult.

Scott Benner 1:17:02
Oh, sure. There are people helping my mom. They're 18 and 19 years old. Right? Yeah, this is the best job they could get. They're not interested in helping people like me like it's a low paying job. They're they they probably don't even know what they're looking for. But my sister in law goes back and talks to them afterwards. And they describe my mom and the decline. But they never did anything about it. Just yeah, we noticed she wasn't herself. Your mom's slid out of bed. That's not normal for her. She seems fine. She seems fine, though. She seems fine. She was slurring her words by then and getting ready to pass out and everybody was just like, Oh, she seems fine. Like, yeah, no diagnostic ability at all with the people that she has contact with day to day. Yeah, you know, so anyway, save a lot of money if you can. Yeah. Gonna be a moment when you get older and you're gonna need to, you're gonna need to buy your way out of it. It's, it's terrible. Anyway, don't get older, right? Yeah. Okay, there you go. Unless you want to stay alive, and then you're gonna have to Oh, man, what have we not talked about that we should have? Ah,

Sheila 1:18:13
we hit the main points for me. So good. All right.

Scott Benner 1:18:18
Well, I can't thank you enough for doing this. And honestly, your story brought out my story, which I thought 45 minutes ago, I was probably never going to tell anybody. But then when you had breast cancer, I was like, Well, this is I have to tell the story now. glad you did. Thank you so much. And thank your husband for taking such good care of you. Because it sounds like he's a he's a good guy. Yes, he really is. You made me think of a post that I saw on the Facebook page. Yesterday where a guy asked if he's dating a girl, and he's worried that she's not he, like he like comes out and says I'm worried this person can't love me. You know, because of my diabetes. Oh, you know, and he got such good advice from people and made me feel like I hope he hears this. You know?

Sheila 1:19:09
Yeah, ya know, there's wonderful people like my husband out there, you know, he just loved me for who I was. It's beautiful.

Scott Benner 1:19:19
Hopefully everybody finds that. And if you hold on for one second, I will explain some stuff to you about how this goes from here. Okay, thank you

a huge thanks to Sheila for coming on the show and sharing her life story. And I also want to thank us Med and excuse me, still upset about the ad I just read. I didn't read it by the way. It's I don't know I just said it. I didn't read it. He imagined if I wrote down the story, I was in the bathroom. I didn't do that I just said off top my head. Anyway us med.com forward slash juicebox or call 888 8721151 for head over there now get your free benefits check and one day you'll be ordering supplies from the can us mint.com forward slash juice box links the shownotes links at juicebox podcast.com. When you use my links, you're supporting the production of the show and keeping all this free and plentiful. So that will get you a big thank you for me. Thank you. You know what? I haven't done the last couple of episodes. I forgot to do it. I'll do it now. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. I swear I put a toilet flushing sound right here if I had one

#1038 Diabetes Myths: And the Rest

A brand new series examining the myths surrounding diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 1038 of the Juicebox Podcast

Well Today is a momentous occasion. This is the last episode of the diabetes myth series. I usually end up calling this one all the rest, because I think about Gilligan's Island and all the rest remember this song like they just they listed some of the cast members and that just like blew past the rest of them. I always found that insulting. But here, it's appropriate, because there was stuff leftover to talk about that didn't quite fit into the other diabetes myth categories. So today, Jenny Smith and I will be giving you one more diabetes myth episode. 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. We're becoming bold with insulin. Want to try ag one use my link, drink ag one.com forward slash juice box. Save 40% off of your entire order at cozy earth.com with the offer code juice box and here's something for you. There's a special offer in the contour ads in the remastered Pro Tip series. If you haven't listened, you really should. This episode of The Juicebox Podcast is sponsored by touched by type one. And I'm here to tell you that their dancing for diabetes Program has been announced and the tickets are on sale, touched by type one.org. Then go over to the tab that says programs scroll down to dancing for diabetes, click on it. There you'll see it says a part of our mission to elevate awareness of the impact that type one diabetes has on nearly 1.9 million American children and adults touched by type one holds an annual benefit each fall called dancing for diabetes. It features award winning and nationally recognized dancers and they create an evening of entertainment and hope. Then you click on Buy tickets and it takes you to another page. Tickets start at $20. And the date of the event is Saturday November 11 2023. It's where were they holding it. So what you're asking me, you want to know where it's at right now. Okay. Although Steinmetz, Hall, Orlando, Florida, it's right there on Magnolia Avenue. I think it's South Magnolia doesn't matter. Neither here nor there. Touched by type one.org. Go to the program's tab, click on dancing for diabetes, go get your tickets before they're gone. Touched by type one.org. The 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 therapist 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. You can message your therapist at any time and schedule live sessions when it's convenient for you. Talk to them however you feel comfortable text chat phone or video call. If your therapist isn't the right fit, for any reason at all. You can switch to a new therapist at no additional charge. And the best part for me is that with better help you get the same professionalism and quality you expect from in office therapy. But with a therapist who is custom picked for you, and you're gonna get more scheduling flexibility, and a more affordable price. betterhelp.com forward slash juice box that's better help h e l p.com. Forward slash juice box. Okay, Jenny, we are looking at I am looking at the rest of the diabetes myth list.

Jennifer Smith, CDE 4:11
I know you're cool equipment.

Scott Benner 4:13
Oh, you saw that? Did you? I did. I'm sitting at a desk that is fairly commensurate to what it should be for what I'm doing. So we hired a I hired an editor to edit the podcast. Right? And he was he and I were talking and he's he's like, how do you do that? What do you do there? And he kind of, like made fun of me a little bit about some of the questions I had. I was like, all right. I was like, Oh, look, I

Jennifer Smith, CDE 4:41
started doing this all on my own buddy. Like, figured it out all me.

Scott Benner 4:47
I didn't know what I was doing. And he's like, he's like, really, this would help and this would help. They weren't big expenses. And I was like, Alright, let me let me try. But of all the little things that I did, like while I was cleaning up the workstation I put I have two monitors, and I put them on these like arms. And it's so nice. Like, I can't believe that should have been the first thing I did. Because there because I'm always sitting here going, like, I can't see it's too far away. I'm leaning across the desk, and now I can just bring it to me. It's very cool. Cool. Anyway, yeah, I didn't know you saw that. Okay, so we're gonna go over like the, I don't want to say the bits, the what's left on the list. Okay, basically, there's a big, long list of random stuff. So everything else kind of fit together under a heading. This stuff is, is going to be a little more, it's gonna feel like it's all over the place a little bit. Jump from topic to topic, and I'm scrolling now. That's fun. Yeah, I think so for sure. So I'm just gonna start strong. With a pump is a bad thing. For a person with diabetes. I know this one makes you a little crazy. And last time you and I were together, we recorded how the pump fixes everything. So you either have people who are telling you, why don't you get a pump? The pump fixes everything. Where there is other people who say, Oh, if you're on a pump? Well, and what is the quote, here I am, I'm on a pump. So I must, quote have the really bad diabetes. Like there's this person says, like there's a scale of diabetes severity. And it ranges from just take cinnamon, and you'll get better too. Oh, no, it's gotten worse. You need insulin, oh, wow, this must be a problem. You've got a pump.

Jennifer Smith, CDE 6:29
Like, wow, this must be really bad. Like your pancreas is like, in flames inside of your body or something. I

Scott Benner 6:35
mean, you got to buy a machine, you're really in trouble. Like, if you couldn't do it naturally. And you couldn't just do it with that insulin. Oh, my goodness, you needed the pump. Why is that? So there's both sides of that there. Because you could be busy running around talking to people who don't know where like, you know, don't use insulin, that means it's getting worse, or you've got a pump. That means it fixes everything, it must pull you in like 16 different directions here and people like that. You know,

Jennifer Smith, CDE 6:59
I would expect so. And I think also from the standpoint of somebody who may not have a resource like your podcast, to have good information about how to think about comments. I think it can it's it's pulling you in multiple directions of I don't know who to believe I don't. Am I really bad off that I have to use this? Could I do it fine if I did something different than better in another way. And then I wouldn't have to use this technology. I mean, and there are many people who do MDI and do a phenomenal job using it by choice. They are not using a pump. Yeah, because they've figured it out in the way that they have. And they're happy with that management. But to tell somebody that they're, gosh, it must be really bad if you have to use a poem. I don't know,

Scott Benner 7:51
it just feels like I don't even have an example. But it just feels like somebody walks up to you and goes, Oh, you're a blonde, you must have such an easy life. And then turn and walk three feet up the street and someone goes oh my god, you're blonde, how hard is that? And you're like, and you don't actually know the answer. So you're like, Well, is it easy? Or is it hard? And why am I not doing it the right way? And

Jennifer Smith, CDE 8:10
why have I not felt like it was easy or hard outside of this comment like you may be going along just fine and dandy, the technology that you're using or whatever it is, and then somebody makes a comment and it almost makes you if you're not strong enough in your own management or you don't know enough to say this actually makes it much better I am doing an awesome job because I have the assistance of this technology then you may 2 guess you might think again Yeah,

Scott Benner 8:40
yeah. So you either know and and you can defend it or you don't want to defend it or you can't defend it or you don't know and you start like it spirals you I would imagine and then you get pulled into different man this is really this series has been interesting actually I'm glad we did this Yeah, yeah. That there's more here you know you have a pump and a Dexcom oh my god you must really have a bed this literally that's a quote from somebody in case you're wondering All right, let's jump about there are a lot of people who when they hear you have a low blood sugar, try to get your insulin for you. I've heard that insulin fixes lows and you know it's it happens in movies sometimes but people are here saying in their real life and I tell that story all the time like I my mother in law you know for years whatever Arden needed she show up, but you know trying to help with the wrong thing in her hand with the wrong

Jennifer Smith, CDE 9:39
thing and I wonder if I wonder if the misunderstanding there come somewhat from some people who may have seen a low blood sugar being treated with again, and injection Jade, maybe Right. I mean, glucagon is delivered with an injection in age old it was a, it was a big syringe with a needle on it right. And so I wonder if it comes from that, as well as obvious television or movie portrayal in which things just clearly said incorrectly know where their medical adviser was, but he had clearly not advised the right way.

Scott Benner 10:26
times you watched you think they didn't take 10 This is before the internet. They didn't know what they didn't know anybody with it. And they didn't ask anybody. And that was the end of it. Yeah. Yeah. All right. Here's a grouping, all called Dexcom stories. I know a lady that told me that she had a Dexcom. I asked her about it. And she went on to say I wear it sometimes. You know, I forget sometimes. She said she talked about like a fashion accessory, which now she sees this kind of, Wow, she didn't know how to handle like, she wasn't seeing it. But back then she thought, oh, that just meant you didn't always need it. Like it's a thing you put on once in a while. Right? That's interesting, too. My Dexcom is bringing low. I'm chugging soda in public. And this woman oh, here's a quote. Ma'am, you really, should you should you really be doing that. I hear your insulin pump. Right? You're high and you could die. Like so. So her Dexcom is dinging she's trying to bank some soda back or something to get something happening. And while that's all happening, because she's so low, she's got someone telling her not to do that you're doing the wrong thing, because they heard a dinging and they've seen an insulin pump. And they know.

Jennifer Smith, CDE 11:47
Right? Absolutely. And I would expect maybe that was a while ago, because I mean, who doesn't ding or ping or make a noise or a bell ringing or something these days with all technology that's available? I mean, you can't sit anywhere without hearing somebody get a text message or an incoming something. Right. So it must have been at a point where the pump was visible. And I don't know.

Scott Benner 12:11
Yeah, here's one. Yeah. I was once in a waiting room. And oh, pump beeps. It's a Medtronic. So when they pull it out, it's the Medtronic with the CGM. The number was their woman next to her said, Hey, I see your numbers, and your organs are failing. Oh, I don't even know what that means.

Jennifer Smith, CDE 12:36
Oh, no. Maybe gasp I'm sorry. Like a weird noise but

Scott Benner 12:41
like your organs are failing. Okay, thank you.

Jennifer Smith, CDE 12:46
And In what regard was like, was this person talking about? Right locations? I'm assuming? Or was the person talking about? Oh, my goodness, like your pancreas is not doing as much as it should be is your organ failing. I mean, technically, a pancreas is bland. So listen,

Scott Benner 13:03
so people are going to hear the begging the dinging and the donkey and they're not going to know and I have luckily for you all listening right now. I have a personal story from the other day. So Arden and I were I took her to a doctor's appointment. And it was not like a diabetes related thing. So these people don't know anything from anything. We're standing at the counter checking in and Arden's blood sugar beeps Hi. So it beeped on her phone. And then my phone like almost simultaneously and it was loud. Like I'm not gonna lie. There are four ladies behind the counter. And they like God, they jumped, you know, and you would think then your brain would go. Yeah, that's probably those people over there. Like, I'll just like, keep this dope. One of them goes, What the hell was that? And so now I I'm standing there, and I'm like, I'm gonna like take this bullet for Arden. Like, that's what I thought. Meanwhile, if I just want to pause I think Arden would have said I have diabetes in my blood sugar. sigh right. But I just went, Oh, I swear to you, I said, I don't know where this came from. I go, that's my acid makes that noise every day at 330. That's it. And I stared back at them. Because I thought this will stop this conversation. Oh my god. So I played I played real straight and I just go I don't know, it's just done it since I was a kid. And the girl like didn't know what to say. And I said, Thank God, I wasn't here at six o'clock. You should hear what my penis does at six o'clock. And I turned around and I walked away and we walked away and Arden goes thanks. And I was like No problem.

Jennifer Smith, CDE 14:48
Oh, that is hilarious.

Scott Benner 14:50
She goes I could have just told them I was like Nana, it's okay. I didn't like the reaction was well and

Jennifer Smith, CDE 14:55
that's just I mean honestly in a clinical professional The setting was totally inappropriate the response that the person had and yeah,

Scott Benner 15:05
I mean, there's a lot of medical devices that beep like, just use your brain for five seconds. Yeah.

Jennifer Smith, CDE 15:11
And Arden is a college age. She's heard words like that before. What if she had been eight years old?

Scott Benner 15:19
And what the hell is that? Yeah. Right. Inappropriate entirely. Because then in your head, you go, Oh, yeah, that's the thing I have to wear because my pancreas doesn't work. And I take shots all day long, like, and then that that's hard on you, you know. So I don't know that any, I just I just diffused that I got in front of it. And I kept it so that we were never going to say what happened. And I also enjoy uncomfortable moments. So it was good for me to. That's awesome. I was once told this one bothers me. You should really just get rid of your CGM and stop micromanaging it. This person was told further Oh goodness, God made you correctly. And if he made you to die, then that's what's going to happen. Oh, no. Jesus, Jesus, that's hard. God, do people are

Jennifer Smith, CDE 16:11
cool. Is this curse? I don't know. I'm not even gonna say it again. But seriously, please rate what comes out of your lips.

Scott Benner 16:19
Yeah, this woman, the person who leaves his comments said, Look, I want to be clear. I'm not bashing religion. You know, I don't care what people believe. But she says two years past. She's now two years past her life expectancy. And she's like, she still thinks about it. She said it actually she curses. But she says that it really hurt. like to hear somebody say that to you. Like it? Absolutely. Yeah. If you're, if your path is you're gonna die, you should just do it. And stop paying such close attention to it. But that's a My goodness,

Jennifer Smith, CDE 16:53
whatever. I don't know, whatever. Faith or whatever this person thought about what was supposed to happen. And like, that is by no means in all the religions that I've studied anywhere near something that should come out of your mouth. I can't even wrap my head around good person. That's just horrid.

Scott Benner 17:11
What if we just said this is true for a second. Okay. Nature, God, I don't care what you say makes you and some people die really early. And it's fate a complete it's a done deal. You get a sticker on you and you come out that says April 2035. You would still say that to someone like No, no, that's not. That's not right. Okay. Here's a big a big header. I used to get upset a lot because injecting in public because of the stares and comments. But when I got older, I didn't I didn't mind just as much. I would just kind of stare back at this point. But this is the ones like my dad was giving himself insulin in the restaurant. My mom noticed the whole table full of people pointing at him. And then her dad went to like the like old like 70s movies, and he slapped his arm like he was going to do heroin first and then he injected which I think that's that's a very funny response. My kids are grown now. But I have two out of three with type one that used to scare other kids in restaurants by keeping themselves injections. She said this was a fun thing we used to do at restaurants. Someone called the police on me once when I was a teenager for giving myself my insulin at a Taco Bell. Wow, yeah. You're a druggie got yelled at me a number of times. Can you please do that in the bathroom? I'm gonna say this. I don't know if this is a myth or not. But please don't inject in the bathroom. Like, just do it in public and let everybody adjust. Like I I really hope people do that. I hate the idea when Arden was growing up. And we were found ourselves in restaurants and we didn't know what we were doing yet. And people would say like, you know, you should do that in the bathroom. Like, I'm gonna go open up a hole into my daughter in the bathroom. I was like, the least clean place and this establishment. I'm like, No, I'm like, I'm doing it right here. And I'm not going to make her feel weird about this. And that's it. Right?

Jennifer Smith, CDE 19:10
Right. No, absolutely. And I think it would be a I think some people it is a by choice. It's not that they've been told, but I do. You know, I've worked with some people that is just a by choice thing, just from how they feel about making other people feel. And there's, again, totally up to you, but you should not have to me may have to feel like you have to accommodate for what other people are looking at if

Scott Benner 19:39
you're more comfortable injecting the bathroom go do it. Like I'm not trying not to but I mean, if you don't want to relegate yourself to that, you definitely I don't think you should. Yeah, just That's it. Just I don't know. It's I'm sure it's hard, but I mean, I don't have diabetes, but I've also been the person sitting there pulling out gear and reaching out cross the table to like, it's I mean, I know I'm not the one with type one. But if I felt like I felt the eyes too, you know this woman just wanted to let us know that she loves yelling Hey, you're Hi. When stuff beeps she's just I just, I just love doing that. My actually Mike used to get up Mike used to inject in the bathroom and he'd get up and people be like, where's he going? And he would announce out loud, like, I've got to shoot up and he would just leave. And I know he enjoyed that. Yes. There's so much here about restrooms and injecting, it's crazy.

Jennifer Smith, CDE 20:38
That's the funny thing in college is my friends loved to use that expression around me, right? Like we I mean, they just knew that insulin went along with mealtimes. And if we were together for a mealtime or something, it was just funny. And I actually I liked the fact that they've found it. Important to understand. Yeah, and in a way, there was a light nature to it. Oh, Jenny's got to inject or not inject. But Jenny's got to gotta shoot off. So they would say Yeah, listen,

Scott Benner 21:06
I think you got to have fun around this whole thing. Yeah. And you're not going to explain it to everybody. So why not like Screw them while you're headed to. In the restaurant, my dad almost went to jail once because of taking insulin, because somebody called the cops on him. And then there's this story here, that the about a person who was arrested in New York City for being drunk in public, and they just don't know their blood sugar was low. I had a card in his wallet that would have shown them that he had type one, but nobody ever looked at it. They told him, it wasn't legal for them to go through his wallet. So you, I don't even know if you know this. But my blog exists because of a story just like that. Like I, before I started writing a blog, I read this news story about this person who was throwing off a train on the Northeast Corridor, I'm trying to go through this quickly. And it was like, late at night, early in the morning. And then the people came in in the morning to get on the train. And he was found like facedown in the in the drive of the parking lot that people were walking by him mocking him like for being drunk. And it was one person for some reason who grew up with a type one sibling that recognized what was happening help the guy. And I just read the story. And I used to think maybe like, I started the blog thinking maybe I could like, educate people enough so that if our never ends up face down somewhere, somebody maybe would have read something. And it was a very pie in the sky idea. But that is what I used to. That's what I thought about in the beginning. So Oh, and what a sad story. Yeah, that's probably not uncommon either. Alright, um, scrolling past Oh, here it is. Here's the miscellaneous says. Alright, this one person just said, I've just been reading through this thread. And we've only had diabetes for six weeks in our house. I had no idea about type one before that. And I've already experienced a lot of the things in this thread in just six weeks of people's kind of ignorance and stuff like that. That's interesting. I think in the first month of diagnosis, I heard every single misconception possible from family, medical professionals, people I worked with people I bumped into just said, Hey, my kid was just diagnosed with type one. Yep, yeah. I, you, you're stuck. We're gonna go through some quotes, you need to get off that stuff. Speaking about insulin. It's just diabetes.

Jennifer Smith, CDE 23:39
It's not something that your own body makes will journey.

Scott Benner 23:42
It's just, it's so I know, it's upsetting. But it's it's the I don't know, I guess this thing. Mostly? The biggest question that's come through my head after finishing up this series, is why don't people keep their mouth shut when they don't know what they're talking about? That's really, and I don't even just mean around this at this point. Like, I don't understand. interjecting yourself into something when you don't have any idea about it.

Jennifer Smith, CDE 24:06
Correct. I would never, I would never try to comment to somebody who is wearing a device. That one I don't even know what it does. They clearly need it for something or they wouldn't have it hooked to their body. And so why would I make a comment instead? If curious, I might actually ask, Hey, you know, I know about this kind of thing. What is your thing do or whatever? Or just don't ask? Yeah,

Scott Benner 24:34
just leave me alone. Running through these that. Everybody every doctor thinks that anything that's wrong with me is my diabetes. We went over this earlier, but this person had a brain bleed that was ignored because they thought it was their diabetes. I don't know how that happens. I was labeled uncontrolled in my chart. And I worked so hard I work so hard for that not to be my existence. And I know the person's point here is that the myth is that they were uncontrolled. She's like, I was working really hard. I was doing everything I could. And it just wasn't. It wasn't all coming together yet. You know, right now it's come together for. And she said she's very proud because it doesn't say that in her chart anymore.

Jennifer Smith, CDE 25:23
And or I mean, as a clarification point to. There are some, there are some ways to get an authorization for a product or medication or something. If the diagnostic code suggests that it's necessary, such as even for CGM, they used to have the doctor and they may still kind of make a note of all of the reasons that that CGM was necessary for this person to have, or the fact that, you know, insurance would only cover six glucose test strips a day, but the doctor is writing it for 10 test trips a day to overcome the inability of the insurance to allow that yeah, sometimes diagnostic code may need to say something like uncontrolled or significant issues with hypoglycemia, and they may not actually be significant in your visual, but it needs to be stated in a way for coverage, which is a really, it's a sad

Scott Benner 26:30
it sucks, but then tell me that just look at me and go, Hey, I gotta write uncontrolled down here. So we get you a CGM. You know, it's like when, when Arden first got a Dexcom they used to put you on a blinded CGM. So you didn't have a receiver. You just wore it. Then you brought it back. They downloaded the information. And then if you were lucky enough to have been low while you were wearing it, then you were allowed to have a CGM. That was how that's how we got Arden's first one. Yeah, so

Jennifer Smith, CDE 26:56
So did you make her go low?

Scott Benner 26:59
Trust me back then I did. I didn't need any help with that. I didn't know what the hell just happened. Let's see, the list of things that I've been told I can't do because I have diabetes is too long. But I would say that they are all a myth. So that was nice.

Jennifer Smith, CDE 27:15
Yes, the only things that I was told three things that I couldn't do. When I was first diagnosed three. And my educator told me, everything else is entirely up to you. That's what she told me. And that's the reason that I really, really liked my educator, she told me that I couldn't sign up to be in the military. Okay, I could not be a bus or a truck driver. And again, this was 35 plus years ago, you know, and I couldn't be I couldn't fly planes. And some of this stuff has actually shifted and changed and laws are different, which is fantastic. But I really think it's super horrible. When you're told a list of things that you can't do in people with diabetes, climb down high mountain. They've done a Brazilian

Scott Benner 28:05
Olympics, they play professional sports, they, yes, have children and live lives and build houses and everything else. I interviewed a guy yesterday for 50 years with diabetes, he owned a sheetmetal shop his whole life. Really hard job, and he did it. No problem. Yeah. This one, I think is interesting. This came from another type one. And the person said that I've heard this a number of times now to the point where I think it must be a misconception for people. My Talking about the second type one, the person writing this, my a one C is so low, that it's normal. And the other type one said, Hey, you might not really have diabetes, and they weren't kidding. So she said, I've heard from enough people who see the low a one C and then say, Oh, you don't have diabetes. And so, and we've gone over this a million ways from Sunday, like yes, yeah, we have right.

Jennifer Smith, CDE 28:59
Just listen to any of the episodes.

Scott Benner 29:01
Talk about it. Hold on a second, this was great. This person said, you can't let your kid wear an insulin pump because it turns them into an antenna. Oh, this seems like a conspiracy theory. Oh, this is excellent. That's it. That's how they track you. Okay,

Jennifer Smith, CDE 29:26
I mean, there's that. I mean, to be fair, there are a lot of considerations around just Bluetooth being so heavily in use and wearing it all that there are there. There's considerable good research about it there is but to turn yourself into an antenna is just,

Scott Benner 29:46
they're just making, they're making you part of the matrix. And then, Alright, listen, maybe Bluetooth isn't good for me, but I don't think I'm being made part of the matrix. I appreciate it. I had short hair and was wearing it on the pod so the person told me that's why they knew I had cancer. Sir. Oh, the short hair part is just fascinating. Why the hell do people say diabeetus? Should we tell them? Do they not know? Do people not know?

Jennifer Smith, CDE 30:13
I don't know. I think it has to do with Wilford

Scott Benner 30:16
Brimley for sure. Do you think people don't know that? He's got to be dead, right? I'm sorry. Well, first, I'm just gonna let just Okay, so I think he did pass. He's got it. I mean, hold on a second. He died. Wow. Good for you. Well, for it, he died in 2020. Okay, he was born in 34. He was an actor who you may or may not know. I mean, he was in cocoon, the thing and the natural there's where you might know him. But he got a work in ads as an older man like he did the Quaker Oats ads, right? Yep. Like, and he would any also would do ads for diabetes stuff. But yeah, he had this really like, what would you call like a Midwestern kind of maybe? Western accent? Like outwear? I don't know. Exactly,

Jennifer Smith, CDE 31:07
potentially, I guess. I mean, if I hear diabeetus. I don't even know that I'm saying it the wrong way.

Scott Benner 31:17
He would say it. He had diabetes. And he would do awareness stuff. And I mean, just doing awareness stuff up to the end of his life, by the way, I think like 85 years old, but he said diabeetus. And so

Jennifer Smith, CDE 31:28
did my grandmother who had type two diabeetus. She said it and she said it as well, even after I was diagnosed, and my doctor said diabetes. And I said that and my parents said that doesn't matter. Yeah, it's there.

Scott Benner 31:49
I am going to bring this up, because it's brought up here a number of times, I don't know that it fits into myth. Exactly. But it is really bothersome to some people when diabetes is like the focus of mockery or joking. Online, you know, comedians, that kind of stuff. I, you know, I don't know, like I, I've heard it. And I'm like, that's not right. But I also think the thing they said before that if they're a comedian, for instance, I probably wasn't right, either. You know, it's all kind of blown up. But if it strikes you that way, I do understand if it would make you feel that way. So I don't know if it's a myth that people don't understand diabetes, and that's why it comes out. Or if it's just people trying to be funny, and not having concern for how other people would feel when they hear it or not.

Jennifer Smith, CDE 32:37
Having heard it from numerous comedians. I would expect that there's an I don't know, but I would expect that there's a lack of understanding even of the differences in the types of diabetes. And so they're in it's the surface level of what they do know, or have heard, which is not correct. And so they can make light of it or make a joke out of it, even though what they think they know. To make the joke out of is totally not right. Anyway. Yeah. So

Scott Benner 33:14
well, you know, and then you get into some things here like this, this miscellaneous thing goes on for a while. But this last one is kind of funny. This person thinks they remember in 1987, being told that they had diabetes from eating too much salt. But they also said, I'm not sure if I'm remembering this correctly. Maybe they were saying sugar and I don't remember it. But there's nothing about there's no. Right? There's no misconception about salt causing diabetes, is there?

Jennifer Smith, CDE 33:40
Not to my knowledge, there is I might have missed something. But

Scott Benner 33:46
yeah, I don't see that as like a thing people say. So I think this was a missile. Remember, it's on her part, but still very funny. Man, he doesn't

Jennifer Smith, CDE 33:52
come up and Dr. Google did not know.

Scott Benner 33:57
So here's some stuff that's a little more like around eating that people take poorly, right? Because I mean, if if somebody's telling me right now, this is a myth about diabetes, that eating low carb and high protein is good for diabetes and health. I couldn't argue with that. You know, like, so that's the thing that, you know, if you eat fewer carbs, you're gonna use less insulin, it might make the whole thing easier. Like, I've eaten low carb times in my life and lost weight. And it's been okay for me. I don't know that. You know, I'm not a nutritionist, and I think everybody's body has different needs. But my point about this is that this person heard that it's not a thing they agree with. So they think of it as a misnomer. It's interesting, right? Yeah. Because the next one the same, I should go see a nutritionist that would help me get control of my diabetes. I gotta tell you, it might. You know, like, if your eating style is so slow such that, like you're having trouble using your insulin, it's possible that somebody could teach you something about eating you didn't know before, and maybe that would help you. But I guess I'm sorry, why they would say no, no. Yeah. As a as a misnomer again. So,

Jennifer Smith, CDE 35:12
right, right. I mean, I think if you did go to see someone, a dietitian, specifically, and they at least give you some idea of maybe what you take in could be cleaned up. And maybe just cleaning it up, helps to even out the action of insulin, even without as much understanding about insulin, which I would say, goes right along with food is the understanding of how insulin supposed to work, and knowing how to dose it and appropriately time it right. And then understanding that, well, gosh, if I did this versus this, the insulin would probably work more to my benefit now that I understand how it's going to work. I can work on the nutrition part of it, but you have to have somebody good, who really can help you piece those things together. You may not know enough, unless you're really good at data analysis. To kind of figure that out. Yeah.

Scott Benner 36:09
All right. So here's some other bad stuff. But let's do a slightly bad one. Before we I actually thought I was gonna say something. And now I realize I needed another second before I'm gonna say it. Okay, this one here is just about being a helicopter mom. And that, like, you can't help them. That's their diabetes. Like, you know, like that kind of thing. I honestly, I'll say, I think that's a myth. Like, I think children need help with things. I don't think you should do everything for them. They should definitely learn and grow and, and have their own experiences. You shouldn't, you know, I don't think you should be doing every last thing forever. But, I mean, this is a serious thing and paying attention to it as an adult, when I mean, when he asked an eight year old to take care of their diabetes, it's not really going to go well. I don't imagine this one. I can't even read it. It's just too upsetting. This one said, I was in line to pick something up at a store. And I knew my blood sugar was getting low. But this person came up and said, Can I just cut in front of you have to grab something real quick. And they let the person do that. And I don't this doesn't really fit this thing. But it's such a story. And so then the person then slows down takes their time starts meandering, this person's blood sugar's tanking. So she reaches into her bag and starts pulling out candy and eating candy. And I guess it got to her a little. And she said that the person had cut in front of her, it wasn't very nice of you to cut in line to say you were just grabbing something and now to take all this time. And the person turned back to her and said, well, at least I'm not a pig eating food out of my handbag. Oh, so yeah. She The woman said, Well, I have type one diabetes, you must not know about this. And the lady said, Who cares? Oh, then she cursed her out. So good for you for cursing her out. But I think that does. To me, that maybe that puts a bow on this whole thing? Because if your expectation is for people to understand this, and these myths that go away, I don't think that's gonna happen.

Jennifer Smith, CDE 38:14
Get agreed? Yeah. 100%? Yeah,

Scott Benner 38:17
I think you can see them laugh at them. But you got to let it go, I think,

Jennifer Smith, CDE 38:21
right. I think what has been proven overall with this myth series, as well as even just the general concept of all of the people that you've had a chance to talk to. We have a public that's very under informed about diabetes and about many things. It's not just diabetes, but because we're in this realm and we see what is not known and what is really not well understood. Things like just grabbing some things out of your purse, may look to another person who doesn't see your CGM or doesn't see your insulin pump or may not even understand what that is. They're just gonna think, like deciding to eat in the middle of a store. I mean, and you know what, I I'm so over like, I years ago, I got over caring what people look at me about. I don't care. I'm me. If you got questions, please come ask me. I mean, I had somebody asked me one time when I was on the metro, if the pod that I was wearing was a monitoring device from prison.

Scott Benner 39:29
Oh, there's one here that says Does that give you your COVID vaccine? That's a great that's a good one. Oh, well you do look rough and tumble like you've been let out.

Jennifer Smith, CDE 39:43
Like a nice summer like business suit and it was like a sleeveless you know, I must actually have had a vest on I had my jacket off right. And I pad was on my arm. And I could tell that the guy was like looking and looking and looking and there were enough people that had gotten off and finally he got back brave enough to actually come and ask. I mean, you can look well, however you look looks are not what you know, would tell you anything about that. But I was like, no, really I have type one diabetes, this is my insulin pump, but you know, it does what it needs to do for me

Scott Benner 40:18
ever being hit on and you didn't realize it by a guy with no game? That could be you know, I

Jennifer Smith, CDE 40:23
kind of comment that is

Scott Benner 40:26
that was not gonna get you. I think my number but yeah, I you know, hearing that, that that last one there about the person who's like, I don't care and you know, like just being you're being attacked, right? I think that's that fear is what stops people from, you know, not going to the bathroom at a restaurant and they don't want to be judged and nobody understands. And I don't know that this. I mean, I hope that this series has served for people as a way to say, I can't expect people to understand this, I'm gonna have to be strong on my own. And not to expect the world to come save you on this one. Because I mean, you're gonna meet a ton of great Pete, listen, here's the problem. You meet 99 terrific people that support you and your diabetes. No one person turns to you and goes, Hey, Piggy, what are you doing with your bag there? And you're like, Oh, Jesus. Okay. Turns out one and 99 is really hard to hear from and but that that person fought back so good, you know, I would have cursed I definitely.

Jennifer Smith, CDE 41:28
You would have told them that your butt makes weird.

Scott Benner 41:32
God, that's what happened to 315 to my ass. Yeah. So but but I mean, just for everybody listening, like, I hope you enjoyed this. Like, I know, it's been funny at times. But it's, it's also it's had an underpinning of sadness through the entire thing. And, you know, I think when I first thought about this, I did think it was going to be funny. Like, I thought it was going to be like, just stupid crap. People say, and we'll laugh about it and read another one from the list. But then I started seeing the pattern. I was like, Oh, wow, this is just this. Yeah, this is it. Yeah. I mean,

Jennifer Smith, CDE 42:06
in some of it was, I think you have to develop, you have to develop a sort of sense of humor. You do. And some of it was funny to read through and think about, well, why and, you know, obviously, but some of it was really sad to hear that, especially in this day and age with technology and everything. But people are still so under informed.

Scott Benner 42:31
Well, my other my other hope for this was that by hearing this stuff, from a different perspective, maybe it would trigger something in someone's mind. Like, for instance, the the idea about insulin like, Oh, you're using insulin and must have been getting bad. Like, I want you to think the opposite. I want you to think if I need insulin, I need insulin. Let me take it right. Yeah, you know, that kind of stuff. And so I do think there's, for some people, I think this series could play like, wow, people are stupid. And here's a list of ways and I think for some of you might have heard stuff and thought, oh, I can do that. You know, I don't have to listen to what other people say. So I hope people enjoyed it, Jenny, I really did. I did as well. Good. Thank you. Oh, it's been my pleasure. I'm excited for the next thing we're gonna record. So I am to excellent. I know you are. Thank you so much, of course.

Starting tomorrow, Jenny and I are gonna start working on a new series that's aimed at doctors and patients, it's going to speak to patients in one way and doctors in another think we're going to call it grand rounds, but I haven't decided yet. You're going to love it. Thank you so much to touched by type one, for sponsoring this episode of the podcast touched by type one.org. Go get your dancing for diabetes tickets go. And of course BetterHelp betterhelp.com forward slash juicebox save 10% off your first month of therapy at that link. And of course, you can hire Jenny at anytime at integrated diabetes.com.

The afterdark series from the Juicebox Podcast is the only place to hear the stories that no one else talks about. From smoking weed to drinking with type one perspectives from both male and females about having sex with diabetes. We talk about depression, self harm, eating disorders, mental illness, heroin addiction, use of psychedelics, living with bipolar, being a child of divorce, and honestly so much more. I can't list them all, but you can by going to juicebox podcast.com. Going to the top and clicking on after dark. There you'll see episode 807 called one thing after another episode 825 California sober. Other after dark episodes include unsupported survivor's guilt spaceview Position dead frogs these titles will make you say what is this about and then when you listen you'll think that was crazy juicebox podcast.com Find the afterdark series it's fantastic