#1459 Money Where Your Mouth Is
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Sandy, known from “The Fighter,” is 71 with 64 years of T1D experience. Recently, an existential moment sparked her return to share insights and inspire others.
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Scott Benner 0:00
Welcome back, friends to another episode of The Juicebox Podcast.
Sandy Schwartz 0:15
Hi. This is Sandy Schwartz. I'm looking forward to my second time on Juicebox, I've lived with diabetes for 64 years.
Scott Benner 0:27
Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d exchange.org/juice box and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d exchange.org/juice, box. It should not take you more than about 10 minutes.
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Sandy Schwartz 2:11
Hi, this is Sandy Schwartz. I'm looking forward to my second time on Juicebox.
Scott Benner 2:18
You were on. What Episode Do you know the name of it,
Sandy Schwartz 2:22
the fighter. And you told me I was old.
Scott Benner 2:26
That's what you remember from that.
Sandy Schwartz 2:30
It's like, the second thing you said, why don't you tell people how old you are? Because the way you talk, they might want to know. And I was like, that head, and I got mad and said that I had just gone and stood in the Keith Urban concert for five hours. How dare you? And that's how you got the name, the fighter, the fighter. And then to follow that up, when I listened to it, I was like, damn, I do sound
Scott Benner 2:57
old. Tell people now. How old are you? 71 I live
Speaker 1 3:01
with diabetes for 64 years. Okay, okay,
Scott Benner 3:05
wow, that's a long ass time. Why don't we just jump right back in and tell people why you wanted to come back on because you sent me, I'll say this. You sent me an email, and I wondered if you were okay when you said,
Sandy Schwartz 3:20
Yes, I did. I sent you an email and said that I wanted to come and talk about mortality. Okay? Because after Jimmy Buffet died, here we go with another obsession of mine, I started realizing that my life would end someday.
Scott Benner 3:40
That really is what got it to you. No kidding, Jimmy Buffet passing well for the back story, yeah,
Sandy Schwartz 3:47
you can take chronic illness and you can ignore it, or you, and I don't mean ignore it, but you can not accept any limitations, or you can feel like your life is over. And I was a rebel. So I took care of myself, but I didn't let it stop me from doing anything. And so I used to work on a scuba boat in the 70s as a scuba diving boat, and once I heard Jimmy Buffet for the first time at a concert, I was like, this guy sings about my life, and so I have been a parent. Had like 30 concerts, every every Broadway show, duck political rallies, book readings, Facebook groups. And he was like, larger than life for a lot of us. And so the fact that he could die was like, Oh, my God, I can die too. Does this song live like Jimmy Buffet does? And that's kind of how I lived. Well, let
Scott Benner 4:50
me ask you a question. Then, why are you not at? I can't believe I know about this. Why are you not at meeting of the minds right now, it's different. Now, it feels different that he's gone. Yeah, I guess I'm still grieving. Wow. Okay, I did go to a local a local place last week where a local artist that I follow was singing, and he sang a lot of buffet for me, I just feel differently now. Okay, also, here we go. But those people are younger than me. You feel a little older now all of a sudden, yeah, but I'm
Sandy Schwartz 5:31
accepting it. I mean, it's been over a year. You know, it takes we have to grieve for a year. So I got my year.
Scott Benner 5:39
So this is gonna sound strange for a second, but a friend of mine plays drums in a Jimmy Buffet. I guess are they tribute bands?
Unknown Speaker 5:48
Yeah? Tribute temp rock, tropical rock.
Scott Benner 5:51
Yeah, that's why I know about the meeting of the minds. I would not have known about it otherwise had I not seen a friend of mine like on a plane a couple of days ago. Do you know Jimmy and the parrots? No, no. Okay. I wasn't sure how many of these bands there are, because they're playing at the festival, so I wasn't certain. Well,
Sandy Schwartz 6:07
they're they're good if they're playing there. Okay, all right, awesome. Okay, so
Scott Benner 6:11
you spend your life listening to this music that resonates with you, right? And you feel connected to the singer passes. What do you know how old he was when he died, 76 Okay, he's older than you, but not that much older than you, five years and Sandy, this is the first time you, like in your life, that you've thought life is finite or it's just it hit you differently this time.
Sandy Schwartz 6:35
No, it's not the first time. I think there's some unsaid rules on here that I think are healthy about talking about death, but I have lost four good friends to complications of diabetes, and I think there's a caveat there. We were all diagnosed in the 60s and 70s. People who are diagnosed today, I think, can have a normal lifespan to the most part if they take care of themselves. So I'm not saying that to put fear in anyone Sure. Of course, I've faced more mortality. You know, if you go to the doctor and you get if the eye doctor tells me I have one little sign of background, retinopathy, I'm like, Oh, my God, I'm gonna die tomorrow. You know, I You can't help but that. But there was just something about this big, huge part of my life, and it's crazy because my dad died, and he lived with me for 20 years, and we were very close, but he wasn't my contemporary and my friends with diabetes who died. It wasn't shocking. I don't know. It's hard to say, Yeah, I can't come on here and just talk about death, that it's so morbid. And so I started thinking about psychological responses to diabetes, since I'm a psychologist, and I thought that when I read a lot on the Facebook pages, or when I read the Facebook pages, often I worry about both, or I'm concerned about both the caretakers, mostly the parents and the kids, and sometimes the older people with diabetes, but mostly the caretakers and the kids, because of my experiences growing up with diabetes, which I've come to realize are very different today for children Because of the treatment, but so I thought maybe it would be good instead of talking about the physical nature of diabetes, to talk about the psychological, yeah, okay,
Scott Benner 8:51
I'm up for what you're up for. I had a great time when you were on last time. I find you to be really thoughtful. And I mean, no lie, about a month ago, you just sent me an email that just said, Let's do a podcast about thinking about death. And I answered back and asked what you had in mind, and when you talked about, you know, in your email a number of different things, but it just felt like stuff was kind of piling up on you. Is that fair to say, like the Jimmy Buffet loss and then this thing about you going to Jocelyn to get your you called it your pre death workup. What was that? Yeah, should we talk about that? Yeah, I want to know, because it's not something I'd ever heard of before. When I tell you about cozy Earth, I'm usually talking about the discount use Juicebox at checkout to save 40% I don't think I take enough time to tell you about the quality of their products, superior softness and enhanced fabric that is durable and won't pill. It's guaranteed for 10 years. Temperature regulation, the cozier, the sheets that I have are incredibly breathable. You're going to sleep several degrees cooler than. Normal. These products are made responsibly. They're durable, and there is a commitment to quality, so much so that you will get 100 night sleep trial on the sheets and a 10 year warranty. Why don't you let cozy Earth create a sanctuary within your home? That's your time. You want to be comfortable sitting in those sheets or lounging in your joggers? Maybe you've just returned from the gym or completed a hard day of work, jump into the shower and the next thing you know, you're drying yourself off. You feel like a princess. That's how I feel. I feel like a princess when I dry myself off with those towels. I really do same as when I get into the bed and when I put on these great clothes, cozy earth.com. Use the offer code Juicebox at checkout, you will save 40% off of the bamboo sheets, the bath sheets, or whatever else you decide to buy@cozyarth.com Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic, extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox
Sandy Schwartz 11:56
Okay, so Jocelyn has a program when you've had diabetes for 50 years or more, that you can get a ad. You know, I got my 50 year metal and thought, Why did I do this? But along with that, they invite you to come there for testing, so you can be part of a study. And I had never done it for one reason or another. I mean, I wanted to they had some issues in their program where they kind of fell off the wagon for a while. A friend of mine's husband died, and he left his body to something called, I think it's called Genesis, and it's a program where they use your body or your organs for teaching, and then they send your family, they cremate you and send the remains, and then you do what you want. And I thought, wow, I should give my body to diabetes research. So I called Jocelyn, and to make a long story short, I went to Boston. They put you up at a hotel next to Johns Hopkins, or wherever they are. It's in that big Medical Center in Boston. It's not Johns Hopkins, because that's a Maryland but anyway, you pay for your ticket and they reimburse you up to $1,000 and so I went to Boston. I went on a Sunday, I found out where their art district was. I went to a art festival and artists workshops, and ate seafood for every meal, and and did my what I called my pre death workup. So they studied my brain, my kidneys, my eyes, and I got this incredible MRI, where they gave they gave me different shots, chemicals, IV to do different things, like get my heart racing, to look at my digestion, to whatever they looked at, I got a great report from it. I don't mean great, like, positive, although it was positive, but I mean things that I didn't even know I had. Like, I have a lot of indigestion, and I take medicine for that, and they said I had a hiatal hernia. I'm like, Oh, no wonder. So now when I die, I have a phone number that my family is supposed to call, so I took my organ donation thing off of my driver's license so that now what happens is Jocelyn sends someone to the funeral home to harvest what they want, and then my family does what they want with the rest of me. I mean, I'm going to be. Cremated and put in the ocean with a program called the Neptune society, with all my dogs whose ashes I have, but that has nothing to do with Jocelyn. That's just me. Yeah, that's
Scott Benner 15:11
your wishes. You're going to have your ashes put in the ocean along with all all the pets you've had through your life. Yeah. Oh, it's lovely. Did it feel like a big leap to do this, to donate portions of yourself for research?
Sandy Schwartz 15:27
Just felt like the right, you know, I wore the first insulin one of the first six adults to wear an insulin pump in 1979 for research, I participate in research and diabetes research a lot, and since I wanted to be cremated anyway, it seemed like the right thing to do. Calling it my pre death workup was a reality. I think,
Scott Benner 15:51
do you feel like you're I mean, this is a weird question, because nobody knows when they're going to die, but do you feel like you're dying soon, or do you just feel like you're now just Ultra aware of it.
Sandy Schwartz 16:00
No, I do not feel like I'm dying soon. My father lived. He was nine over 95 and I am super healthy, but I think there's a time in your life when you don't really think about it. Or maybe for me, I've always felt kind of immortal, which I'm not sure is that healthy, but it's just who I am. Yeah, and I don't think it's right or wrong, it's just who I am. And I just think that's a time in your life when you see the people around you not be as healthy, or maybe, you know, lose their life, and you think, wow, those are my contemporaries? No,
Scott Benner 16:42
and you don't talk about it much, right? But, you know, because of all the thing, all the things that you've done, the research and community stuff, like, you know a number of people with with type one through your life,
Sandy Schwartz 16:53
I know a number of people, yeah, I've worked in the industry. And people with type one tend to work, you know, tend to gravitate toward that. So, yeah, I know a bunch of people.
Scott Benner 17:05
So then the psychological part of this that you want to talk about, I don't know how to lead you through this. So you said you made notes. I guess I just like to hear them. Well,
Sandy Schwartz 17:16
it all stems from, I, I follow you on Facebook more than I listen to the podcast, but I do listen to the podcast, and like I said, I react strongly, sometimes to the parents who have let diabetes affect their family as much as they have. So I start thinking about grief, and I think once you get a diagnosis of any chronic illness, you might grieve if you break your arm, because I might not be able to go scuba diving for a month. But that's just acute it goes away. It's no big deal. You forget it. But the chronic, chronicity of diabetes, of course, you're going to grieve. I mean, it would be crazy if you didn't grieve the person who is losing the lifestyle they had previously, and the caretakers of the person who is losing the lifestyle they didn't have previously. So accepting the fact that you're going to grief is important, not resisting it, not denying it, but allowing yourself to go through the whole grief responses is normal, natural, important, unless it doesn't go away, unless it's just chronic, the grief, not just the illness, but the grief.
Scott Benner 18:52
And I see a lot of people
Sandy Schwartz 18:56
who continue grieving. They don't get through the grief,
Scott Benner 19:00
right? Well, let me ask you professionally, then, is that something that a person has control over? Do you think? Yes,
Sandy Schwartz 19:08
I think people have control over their emotions, okay? And if they can't, they need to get help with it. Animals don't grieve. They accept, oh, I'm talking about like other animals, other than humans, to our knowledge, but they they live every day, and if a dog hurts their leg, they start limping right or if they lose a leg, they learn to walk on three legs. They still chase squirrels. But we're humans, and so we go through the psychological process that often we need help with. And of course, it's normal and natural to understand that life is going to be different than it was yesterday, and as far as we know, it's going to be long term forever, until it's not when people. People aren't resilient when they let that change the positivity in their life. It concerns me, and it concerns me because they model that for their children. I
Scott Benner 20:12
sometimes think that it's not even the loss of something specific, it's more of the loss of possibility, or the idea of possibility, like they don't know. Like I was just listening back to an interview I did recently where this woman said, you know, my kid was diagnosed, and when I found a community, it was very helpful to me, because I saw people out there just being vibrant and living. And then she thought, Okay, well, then the things I thought my daughter was going to lose, maybe she won't lose. But when I pressed her about what she thought her daughter was going to lose, she didn't really know. She was just fearful that something had changed. And therefore, this thing, or things that were coming in the future that she couldn't put words to, because she wasn't certain of what they were going to be but they but she was for sure, certain they just weren't going to happen anymore. I think that's why people like seeing athletes that have type one, for example, did any mean like they go, Oh, okay, well, they're doing it. Then it's okay. Then, right? But you're saying that some people have that feeling and never break out of it, but they could, if they had help, if they didn't know how. I mean, how would you break out of it if you didn't need help just move on? Is that?
Sandy Schwartz 21:26
Well, I think you do a good job with your work. I mean, there's modeling happening from the people who have moved on, from the people who do learn to integrate diabetes into their lifestyle, instead of making it the biggest thing in their life, the people who accept it, the people who still go to Disney World, the people who allowed their children to play sports, the people that find a way to to make diabetes part of their life.
Scott Benner 21:57
Yeah, I mean, you just did it really. You just said, I'm 71 I flew to Boston to do this thing, which is so kind of you to do for everybody with diabetes, but then you're like, Well, I found an art festival and I went out and I ate food and I hung it out The Art Festival. Like to me, I think that if I was a parent of someone who was recently diagnosed, or an adult who thought, like, I can't get my life together, you know, because of this thing, I'd hear you say that and think, Oh, well, she did it. I could do it too, but then that's just how I work, right? So I think there are some people who hear that and think, Well, she did it, but she's special somehow. Or I bet she doesn't have the kind of diabetes that I have or, you know, and that's why I always wonder about how much of people's ability to believe that it's going to be okay is rooted in the care that they receive, or the understanding they have about how their insulin works. That's why, I think that's the most important piece of it, understanding how the insulin works, right?
Sandy Schwartz 22:49
How To Become An external pancreas when you don't have an internal or when you don't have endogenous insulin production, how you can use exogenous insulin production yourself produce? Well, it's not production, but how can you use it to mimic everything you had before? Yeah,
Scott Benner 23:10
because you're not afraid to walk out into Boston, buy food you've never had before, have exercise and get involved in situations that you're not really certain of how they're going to go. But you know how to take care of your diabetes. When
Sandy Schwartz 23:23
you said that, I was like, what I never even thought of that. I mean, I was like, What's he talking about? Diabetes is part of who I am. It's It's just what I do. Yes, I would never think about not going to an art festival or eating lobster every night because I have diabetes, I I'll deal with the fat when it happens or not, because now my pump will take care of it eventually.
Scott Benner 23:51
Yeah, yeah. But could that be because that when you were first diagnosed, honestly, maintenance really was just like giving yourself an injection in the morning, so you weren't really that aware of the intricacies of it. And, you know, if you got dizzy, you drank something, and that's kind of it, right, like, so that was diabetes for a while, and then you had it for a while. You were you didn't have big problems. Technology and insulin came along. It got easier and easier, and now you don't think about it. But I'm saying a person diagnosed yesterday. Don't you think they go out and they think, Well, what if my kid needs something and I don't have it, or, like, anything, like, you know, fast acting glucose, what if they have a seizure and I pull out the glucagon, I drop it and it breaks, or, you know, I forgot it in the car, something like that. Like, I think those. I think people think about all of that in the beginning, and I do think they can not let it go, but maybe just meld it into, like moving. There was a time in my life where if my daughter was like, Hey, let's go out today, and we're gonna, I don't, we're gonna go to the mall, and I'd say, well, which mall are we gonna go to if we're gonna go to the one that's close to our. House, then let's just go. But if we're going to go to the one that's 45 minutes away, then maybe we should bring insulin and, you know, a pump change. And if we're going to bring a pump, let's bring a CGM, because if something goes wrong, I don't want us to have to leave. And that's happened in our lives. Like, we've driven an hour and a half from our home and had a pump failure, for example, like, you know, a site just goes bad, and then if you have it with you, it still sucks, because you got to go out to the car and do the thing, and it interrupts your day, but at least it's a couple of minutes you're back at it again. But I've also had it happen, where we were just we weren't prepared, and then you stop what you're doing, get into your car and drive the hour and a half home to change your pump the whole time watching your blood sugar go up and up and up and up and up because you don't have your insulin pump, etc. Like I think people think about that stuff, and I don't imagine that it strikes you the same way. Of course it does. It does strike you that way. Oh my
Sandy Schwartz 26:00
gosh. I never leave the house without at least a syringe so I can get insulin out of the pump if the pump fails and I can take insulin, I never leave without fast acting carbohydrates. They're all over my car, my purse, my everywhere. But
Scott Benner 26:17
you don't you're not worried by it or upset by it. You just do it. It's just the thing you do, right or no,
Sandy Schwartz 26:24
yes, I'm not worried or upset by it, but I I used to say that taking care of my diabetes is the most important thing I do. Taking care of my job is the second most important thing I do, and taking care of my son is the third, because if I don't take care of my diabetes. I can't work, and if I don't work, I can't take care of my child. I mean, it is the most important thing in my life, but I don't you're not burdened by it. It's not a burden, right? It's not a burden. It's a pleasure. Because, finish that thought, because it keeps me healthy, because I'm good at it, because I want to live because I want to live healthy, because I don't want complications, because it's part of who I am, because it's just what I did.
Scott Benner 27:10
So are there people out there who don't have that, I mean, because it keeps me healthy, because I want to live, like, what if I'm out there and I'm not thrilled about life to begin with, and then diabetes comes along and you're like, Oh, well, now there's, you know, all this, I gotta put all this work in just to be healthy for a life I'm not enjoying anyway. Does that matter? Yeah, it would be very sad, right? But I think there are some people that are in that situation. I don't think there's, I mean, I don't think there's as many as not, but I do think some people are in that situation. I also think or wonder, I guess, I guess, I wonder a lot about how much of what I see online is newer diagnosed people, or people who are so frazzled by all this, and they finally figured out that there's, there might be an answer out there, and they're looking for it now. And so when you catch them in that moment of newly diagnosed or very confused, that it feels like everyone's like that. But I just think, I don't think that's the case. I just think those are sometimes the people who speak up because they're the most scared and looking for answers because, like, you said something earlier, that people say all the time, like I see parents doing I see these group of people doing something, and I just wonder, if that group is not like I wonder, is it smaller than I think it is larger than I think it is, or is it as it seems? Does that make sense? I hear
Sandy Schwartz 28:34
what you're saying. I'm not sure. Yeah, I don't I think that people either resist or resent or fear illness, diabetes, disability, or judge it like maybe in the past, they've judged people with a disability, and now they have one, and they're judging themselves. I don't know if where that continuum is between reject and accept. And I think it is a continuum. I think people could draw a line and put reject on the left, accept on the right, and they could put a.on that line where they are with diabetes, and then maybe put a star or a line or something where they'd like to be and and work toward making their life better, accepting their diabetes, modeling accepting for their children. I mean, if they freak out, because let's see what was the most recent thing? Oh, there was a lady on the Facebook page about co parenting, and I felt so bad for her when I first read it, because her husband didn't take care of their child the way she would, and she watched the numbers. To me, it seemed that he was doing an adequate job. It doesn't work. Just wasn't the way she would so I felt badly for her. At first I thought, Oh, that's horrible. What would I do? And then I thought, well, she can't change it. I mean, the kid's not going to die, and if she can't work it out with him, it's going to cause her a lot of grief to worry about it.
Scott Benner 30:21
It'll transfer over to the kid too at some point. Because people used to ask me, like, well, you know, what's this podcast going to be about when Arden goes off to college and you're not as involved with her and everything? And I mean, God, I almost said my journey. That really makes me sound like I feel, I know, but it makes me feel stupid saying that. But it is your journey? No, I know our
Sandy Schwartz 30:42
life is ever is our journey, yeah? And it involves taking care of a child with type one diabetes, right? Yeah.
Scott Benner 30:48
Well, part of that journey for me is realizing, and by the way, I always realize this, but it's accepting that Arden's not going to do this exactly the way I did it. And then it makes me think of the story you just told, because no one's going to do it exactly the way you're going to do it. So whether that's you and a spouse or you and a kid like you can make that argument when they're younger, like, look, it's, you know, they're under 18. There's going to be a a level of, I don't know, effort or, you know, or outcomes that we're going to shoot for, and we're gonna, we're gonna push towards them. And if we don't, if we don't put in that effort, I'm gonna speak up, because I'm the parent, we're gonna make sure that we push towards that effort. But there just will be a day they'll just, they'll leave, you know what I mean? Like, what if it's to go to college, or if it's to, you know, leave your home and get married or whatever it is, like, one day they're not going to live with you, and then they're going to do it the way they do it. And if you can't be accepting of that, then that's puts you in that, that position that you were talking about, of just it'll drive you crazy, because you're old, you know what I mean, to struggle? Yeah, no. And especially, by the way, there are going to be times when you're right and the person isn't doing an adequate job for themselves, and maybe they've made a decision that, you know, this is the level of health they're accepting of. I'm not talking specifically about Arden and not saying her name. I'm just saying, like, this is a thing that I'm aware of now. It's happening, and before it was all academic, I was like, one day she'll grow up, and she might tell me, like, ah, leave me alone. You know what I mean? Or I'm, this is good enough for I'm, I'm on top of it. You might not like the way it's being handled, but I'm handling it. And if you can't accept that, like quickly, you cause a real divide in your relationship, and that, that doesn't help anything either.
Sandy Schwartz 32:32
You know, oh no. Totally agree. Yeah. So if we, if we think about the co parenting or your relationship with Arden, or whether or not your child's gonna play sports, or all the things we've already mentioned, I think it's a priority. So with the co parenting, if your child sees you frustrated with your spouse or your ex spouse, and that that's the primary thing, then you're going to cause issues between the parents, which is going to cause issues with the child. So it's a priority. What's most important? It's also modeling, yeah, your behavior. We model for our children, the way we are is the way our kids become, for better or worse,
Scott Benner 33:22
right? No, for sure, it could even go ways you don't expect. Like, let's say, you know, your kid's 13, the, you know, in this example, the the mother saying, well, the father doesn't do a good enough job, and I'm mad at them because of that. And that is something that the kid sees, and everybody sees. And then what happens if one day the kid grows up to be more of a manager of diabetes, like the father than the mother? Then what you what you've been saying then for years, is the way your dad does this, I'm not okay with I don't like this, and it's caused friction between us. You don't realize that if the kid starts doing it that way, the kid is going to immediately feel like that's how you feel about them. That's a good example, yeah, and I know that through parenting, I see that's that all the time, so And
Sandy Schwartz 34:08
you're also generalizing feelings about the other parent, right? So you're generalizing feelings about the Father, and then the child might choose to take sides, and you're just causing a rift that doesn't need to be there.
Scott Benner 34:22
Yeah. Again, sticking with the example of the mother like Now you look like the crazy one to the Father and to the kid, because they're like, I'm living fine. You're the one who's yelling and screaming about all this not being okay, and it's not being done well enough. Also, by the way, I don't know the example that you're referring to, maybe they're not doing a good job like you, you feel like their father was doing an adequate job. But what is adequate? You know, when we're talking about, like, the seriousness of of diabetes complications, so I don't know if
Sandy Schwartz 34:52
they don't give insulin or they don't treat lows, then you know, you need to go back to court. Yeah, it is so dope. Difficult, like, where is that line? Where do you say, oh, no, this isn't good enough, or this is going to kill my child, if it's not good enough, and if it's going to potentially kill someone, then you got to go back to court.
Scott Benner 35:12
Yeah? But also, there's the unknown part of it again, which I again, I think makes up maybe the most difficult aspect of it, which is, like, you know, you went got your check over, and your stuff looks good, right? Kidneys look good. This looks good. That looks good. That could be random luck. You don't even mean that could be random genetic luck. There could be a person out there that takes significantly better care of themselves than you did, who will have complications that you don't have, or vice versa. There might be people out there just like and it, for some reason, it doesn't touch them the same way.
Sandy Schwartz 35:46
Oh no. It's, it's medically, it's, it's not, it's random, and it's definitely, I did a terrible job. For 19 years, we didn't have an A 1c we didn't have a blood glucose meter. We had nothing. My first A, 1c after 19 years was, well, if, if we extrapolated into today's terms, it probably was 1213, I've lived like that for 19 years. It is luck. It's also has to do with comorbidities. I mean, my blood pressure is good, my cholesterol is good. I have survivor's guilt because of people who succumb to this disease or have complications from the disease, yeah. But Scott, I have two other chronic illnesses, and they aren't so good. And so it's a matter of accepting and learning to live with them and treating them rather than freaking out about them and thinking that they're going to kill you instead of you controlling them. Are you willing to share what those are? You might as well just call it asthma. But it's not. It's intrinsic asthma. Bronchiecta says I take steroids every day. Wow. On the days that I take the same amount every day, my insulin, you know, I've compensated for it the same way you would with with food, kind of like you would with high fat food, right? But on the days where I need to take a lot of steroids for different reasons, like this weekend I'm going to go get with my flu shot. Well, I can't get my flu shot without taking a front load of steroids, because I have horrible reactions to the flu shot because I'm immunosuppressed. So I will take a bunch of steroids. I'll go get my flu shot. I'll put my pump on auto mode. I'll put one of my basal rates that I have set for that, and if my blood sugars aren't great, they aren't great, it's just what I do. Yeah, if I have to go to the hospital because I can't breathe, I walk in the hospital. I tell them what I need. They do what I tell them, and I deal with it. It's not diabetes. If I if I had a choice to get rid of diabetes, or let's just call it asthma, I would definitely choose asthma. Wow. It's that impactful for you. It's that impactful because of how it affects my diabetes. What's the other thing? I have horrible osteoporosis from long term steroid use so I can break bones easily. I have to be careful. I It's just more careful than than you would need to be normally, yeah, but it's not like something I think about every day like that as smart diabetes. Teddy, you're gonna
Scott Benner 38:35
be one of you gonna be that 100 year old lady on the local news smoking cigarettes on her birthday, being like, Hey, I did it.
Sandy Schwartz 38:41
I don't smoke cigarettes, but I'll be on Juicebox when I'm 100 I don't
Scott Benner 38:45
know if you make it to 100 you might want to take up smoking. You might want to see what. What else can I do? You know what I mean? Oh, my gosh. Well, I would love to have you back on when you were 100 I hope I can listen. Let's hope I can stay alive that long. What would that make me 7383? She'd be fine. Yeah, I'd be fine. You let's hope I'm trying to, I'm trying to stay alive, you know. Okay, I don't know if we're getting to your to your reason for coming, though, or if you're just enjoying the conversation. I don't want to, I don't want to not help you talk about what you talked about. Because again, to go back to this email, I said things kind of piled up on you. There was Jimmy Buffet, then there was the thing at Joslyn. And then you emailed me because, like, in a response, like, Maggie Smith had passed away, and even that seemed like it had had like a like an impact on you. Well, then you started talking about your friends who had diabetes complications that you don't mention online and stuff like that. And it just felt like it, I mean, it gets heavy, I guess, at some point,
Sandy Schwartz 39:40
right? But this doesn't need to be my personal therapy session. So I started thinking about facing mortality, but then I thought that is not significant for your group.
Scott Benner 39:54
Really? Do you think because they have a a different management. A plan than you had when you were younger. No, I
Sandy Schwartz 40:02
think it's because they're young and their parents or their their I mean, this is not the 50 years plus diabetes group, so I thought this is probably not relatable, and it might be just scary for the for your population. So then I started thinking about, well, what about that mortality? What can we talk about that might be relatable? And I, I mean, I'm a psychologist, and I read it's not just about behavior. People think it's taking care of diabetes as a behavior, but there's also the emotional part, and I think that it's just as important, or maybe more important, or longevity. And really, you know, the mind and the body work together. If you walk around being fearful or grieving or depressed or in denial or angry about diabetes. How does that affect you emotionally, and does that affect your longevity? So I think it morphed into more than my own mortality, and morphed into what would be relatable for Juicebox,
Scott Benner 41:18
yeah. Well, what did you come up with that you think is relatable besides what we've spoken
Sandy Schwartz 41:22
about already, all those things I just said, to live your life where diabetes is most important, so that you can be happy, so you can go to the fair. Do you
Scott Benner 41:34
see that thought kind of corresponding with because I think the way I talk about it is, I say that if you put in, like, a little bit of effort up front, that everything else gets easier. But I mean, I don't just mean blood sugars, I mean everything else, right? I don't know if it's commensurate to but you don't, you don't jump in your car to go on a, you know, on a on a nine hour drive with a quarter of a tank of gas, and just start off, you know, you go to the gas station, you fill up, and you clean your windshield, and you make sure your hair, you know, the tires, have air in them the way they should. And then you drive away like and now you don't think about those things anymore. They've been handled. And I do think about, I guess, a lot of things like that, but diabetes, especially like if you take the time up front to understand how the insulin works and get your settings right, and stay flexible as you're growing and your needs are changing, and just do the things you need to do first, then the rest of the day is just easier, and which makes the rest of the week easier, which makes the rest of the year easier. I say it as much as I can, because I believe heartily in what you said earlier, like modeling is how we get everything done like you don't accomplish anything by telling people what to do. I just don't think that works. So, you know, you stand out in front of them and you just, you know, you follow. What do you do? You lead by example, right? Except, and you hope people and I see it sometimes. Somebody said online the other day, I used to be mad at Scott because of how relaxed he seemed about his daughter's diabetes. But now I realize, like, I think they said, they went back and listened to the earlier podcast and realized that it wasn't, I wasn't always like that, that it was a process. Of
Sandy Schwartz 43:13
course, it's a process and it's hard. It's hard work. I mean, I don't minimize how much energy I put into taking care of myself, I just incorporate that into who I am. It's not separate. It's who I am. It's just what I do. I mean, people say you get up, you brush your teeth, and then you take your insulin. Well, it's a lot more than that, but you don't think about not brushing your teeth, right? I'm not dismissing how hard it is, or if it sounds like I am, I don't mean to dismiss how hard it is. It's It's freaking hard. It's just I have made it so much a part of who I am that I don't know how to do it any differently. I ran a therapy group at the University of Florida in 1979 The same year, I wore my first insulin pump and took my blood glucose for the first time. So I was on a huge learning curve then, and a girl in the group who it was a group for chronic illness and disability, and she had a physical illness, and she used crutches, and she resented she was beautiful, smart, but she resented walking on those crutches so much, and she asked in the group one day, if you could give up diabetes, would you And I had never thought about it, and that was 19 years after I was diagnosed, and I had never thought about it, and I didn't know what to say, and I told her I'd tell her next week, and I went to therapy about it, because part of me was like, hell yes, and the other part of me was. Who would I be?
Scott Benner 45:00
Yeah, I've heard that response from people a lot actually, like, this is so much a part of who I am that I don't know what would happen if it all just disappeared. It might feel like loss. I think it's important to point out that the amount of effort that you put into your diabetes and that everybody does who's you know? Well, let me just say you for now. Okay, the the amount of effort that you put in to be healthy is probably the level of effort we should all be putting into ourselves to be healthy, diabetes or not. And I've heard people say that. I've heard people say I'm grateful for diabetes because it forced me to take care of myself. And I think I'm healthier today with diabetes, and I may have been without it, which, again, is a thing you're going to need to be through your journey a long time before you can have that, that thought, that idea, deserves some thought, right? Because there's people running around unhealthily all over the place, and because they don't have diabetes, you just think of them as, oh, they're healthy, they're fine, but you don't know what their end is going to be. You don't know how far they're going to make it, or what's going to befall them. Maybe finding out about your diabetes, for a lot of people, helps. Maybe it speeds up some people's demise too. I'm certain it does, of course, yeah. But who are you going to be in that? I mean, if that's the game, who are you going to be in the game like I think that's the personal decision you need to make. And maybe if we talked about it, more and more people would be open to making that decision. So I don't see this as a bummer of a conversation. I think some people won't listen to it, but for those that do and decide, you know, maybe I gotta lift up my head a little more than I do normally, whether that's a parent like me, or, you know, a person living with diabetes like yourself, like, like, you know, that's it, right? Like, life's a grind, and you gotta grind. It's not gonna get my my son was in here the other day, and I said, You having a good day? And he goes, I'm not sure if I've ever had a good day. I said, What's that? And he said, you know, like one of those days where you wake up and everything just works out great. Works out great. I was like, Oh, if that's how you're measuring a good day, then yeah, maybe you've never had maybe no one's ever had one. That's
Sandy Schwartz 47:08
interesting. Yeah, I think I'd like to add to what you said about working hard at diabetes, that you can work at heart at diabetes and you can resent it, or you can work hard at diabetes and you can accept it, and even if you work hard at diabetes, but you resent it, if not your health, but if not your physical health, but definitely your mental health, is going to be worse than if you work at diabetes and just accept it,
Scott Benner 47:37
I think you could resent it and still be proud of Your effort, and that even might be valuable, you know, like, but I take your point like resenting anything being angry through your life. I don't know, Sandy, if there's, you know, actual research that would tell you this or not, but I mean, I think it like you said, Mind, body goes together. If you're run around, tired, angry, resentful all the time. I think it's going to have a poor outcome on your faith, you know, on your life. Of course, yeah,
Sandy Schwartz 48:05
your mind and your body are all one, and the dichotomy that we place on that in the western world is a death sentence, one way or another. I mean, let's be happy. Let's we get one life. Let's live it. Whatever we have to do, yeah, to make it to make it our own, to make it good, we
Scott Benner 48:26
do sort of have, probably because of as much contact as we have with like, you know, social media and content. Like, right, you can there's no shortage of people's opinions and arguments and everything. Like, we do have an outrage culture, where being outraged about something is part of a lot of people's day to day. You know, politics. Who knows what? You know some geez, I've never seen people be angrier about things that I can't This is my son and I were talking about this last night. He goes, Dad, I saw one of those cyber trucks. He goes, I thought it looked really cool. And he said, but man, some people are really angry about how it looks. And I said, some people are really angry because of the politics of the guy that owns the company. And I said, it's so interesting because I have a refrigerator and I have a car and I have an oven and I have furniture, I own, all these things I don't know the first thing about the CEO of any of those companies. You know what I mean, like, like the guy who runs the company that made my television could be a monster. I have no idea. But the guy who makes Tesla is runs around yelling his his opinions out loud, where you can see them on social media, and now people either love him or hate him. Some of that anger you see towards that car could literally just be because of the guy. But when I stop and think about it, I don't understand why anybody's got the energy for that. Do you know what I mean? Like, I don't know if that makes sense or not. Like, I don't have the energy for that. Like, I needed a sofa. I bought one that I thought looked like it was gonna hold up. I hope the guy who ran the company. He's not a, you know, a lunatic, but if he is, I don't know if I have the time in my life to find that out. I don't that makes sense or not, but no,
Sandy Schwartz 50:09
I mean, you've said two things while you were talking that interest me. One is outrage culture, and the way you put it, I haven't thought about it, but you're right. We do live in an outrage culture, and the division is is bad. But the other thing you said which interests me even more, and it's probably because I don't I've thought about it. I love hearing you talk about your son, because Arden gets so much attention that I often wonder how the other children, and not just jurors, but families of children with diabetes, how the other children feel. So I love that. Twice during this conversation, you've said something about your son, yeah,
Scott Benner 50:54
no. I mean, he's a I love him. He's I love hanging around him and talking to him and hearing his thoughts about things and sharing mine. And I love seeing where, what? Sometimes I say something and he's like, yeah, and then other times he goes, Oh, I think you're off on that. Like we've built a relationship where if he thinks I'm wrong, he tells me it's not in a shitty way. You know what I mean? I feel helped by him as much as I hope he feels by me. Going back to the outrage idea, it trickles down through everything. You know, insulin pump company says they're going to make an app and it comes out three months later than they say it's going to you might think that they, I don't know, like, set the world on fire, the way, you the anger that comes from people. They said this was going to be out in June. It's June. It's not here. And I'm like, Oh, my God, you're fine. Just relax. Like the thing will come out eventually,
Sandy Schwartz 51:38
right? And the reason it hasn't come out is because there's glitches. Please fix those before it comes out.
Scott Benner 51:43
Let's not send it out beforehand or whatever. Like you don't know why it's held up, but it is. I watched my wife have a thing at work. It got held up, and she had to go into a meeting where people were like, all up in arms. This thing didn't happen on time. I get to see her at work, and she's in the, you know, she's in there, and she's trying to explain it to people and everything. And finally, she just has to stop and say, like, look, the guy that was running this died. We're trying to get it together. Like, you know what I mean? Like, you don't know why stuff happens. Like, it's so simple to step back and go, Oh, they're not trying hard enough, or they should have just hired more people. Or, you know, like, you don't know what's happening, and maybe sometimes it is. People are inept, but you know what? Like? That's why I lean so hard in my life on that, that parable, the this is water, which David Foster Wallace gave that commencement speech. As part of the commencement speech, it's got to be like, 20 some years old by now. You can find it on YouTube. It's called, this is water. You can listen to it, but part of the commencement speech, he just delivers to these people the idea of like, you don't know why other people are doing what they're doing. They might have a really good reason, and they might not. But what good is it to you to assume they have bad intentions? Because you'll never know for sure, and it just makes you angry, and that anger is not good for you to just assume they're trying their hardest and it's just not working out and move on. And I just I do so much with that idea in my head, when my son comes to me and says, I saw a man giving another man the finger because of the car he was driving, and I think to myself, who could possibly care that much. I don't understand even like there's wars overseas, and I hear people arguing about them. I see two people Sandy, God bless them. I see two people I know for a long time. I don't think they know shit about anything, okay, but suddenly they seem to understand Israel and Palestine. And I'm like, you guys don't know what day your recycling comes, and you feel like you're qualified to have like, a position on this, strong enough to like, hate the other guy in the argument, like, and I'm not telling you, I know what the right answer is. I'm telling you, it's interesting to watch two people who are like, have nothing to do with this. You know what I mean? Like, they have no background in it. They have no education in it. They've never been personally involved in it, but they know for sure, like this. And I think I see people deal with their diabetes the same way they pick something and they get angry about it. I wish everybody could hear me say it, and believe me, like, this is water, okay, like none of this matters. Tomorrow is going to come, like, pick some solace from the way Sandy, like, described a broken arm. She's been alive long enough to know if you break your arm, you keep living, and one day you forget about it. And I just think that a lot of times we could apply that to to a number of things.
Sandy Schwartz 54:35
You know, yes, acceptance is the name of the game. Often,
Scott Benner 54:39
I usually say, often, the best thing to do is nothing.
Sandy Schwartz 54:42
I like that. Yeah, I like with the water example, too. I'm gonna go listen
Scott Benner 54:46
to it. Well, it's wonderful. It's just, it's just a commencement speech given by this, by this writer, who sadly took his own life some years later. But it made so much sense to me that I actually have a stack of the commencement speech pre. To just like, a small, like, like, kind of novelty book. And I give them to people when
Sandy Schwartz 55:04
they graduate, I love that. I'm gonna go listen to it right now.
Scott Benner 55:08
I give them to people, and I say, Listen, just please, if you take nothing out of this except for this one thing, you don't know why other people are doing what they're doing, and spending a lot of time wondering and being angry about it is bad for you and doesn't do anything to change it. So I don't want you to get me wrong. Like, you know what I mean? Like, if, if somebody did something horrifying, I'd say, All right, I'm not going to buy their sofa. Like, you know what I mean? It turns out, the guy that made my sofa burn down Atlanta. I won't buy a sofas.
Sandy Schwartz 55:42
But the fact that we know or think about that is that really what's important, right?
Scott Benner 55:47
And there are so many people in the world doing good, and so many people in the world doing badly, and I think that the only reason you're aware of who's who, again, going back to like, because of like, social media and people's desire to just like, tell you know. Like, just be out. Like, I know you think you know them, but I know you, you don't not to the level you believe you do. That's all. It's how I feel about it. I don't think I can know enough about how someone feels to make a judgment about a person I've never met before. And, and I'll tell you, like, this sounds I know this sounds silly like, and it makes me sound silly like I have a low level amount of fame, a very tiny little bit in a very specific place. And I watch people talk about me like they know me. And when I hear them, I think that's not just me not seeing myself like that's just fundamentally wrong what they just said, and it has stopped me from having like, those thoughts about other, like, massively famous people. You know, you used to like, you see a news story and you'd be like, ah, that guy sounds like an asshole. I just look at it now and I go, I have no idea if that's right or not. So people like to assume, yeah, I guess so. And I don't know. I just think that overall attitude gets applied to so many different things that you could end up applying it to this as well to diabetes as well that whole idea of like, I'm gonna be angry. I know someone's trying to screw me. I know that person's doing badly. I know that company's messing with me on purpose. I'm trying to get somewhere. They're stopping me, like all of that talk is not good for you.
Sandy Schwartz 57:23
Okay, so let's take that back to diabetes. A parent is with a child, and the pump falls off, so the parent freaks out and makes it a huge big deal because the pump fell off, or the parent gets out the syringe they carry in their purse, draws up a little insulin, figures out how much they need to keep going on their journey. Which is better model for life? For life, not just for diabetes, for life,
Scott Benner 57:54
it's really the way to go with anything. Just like it's keep going, right? Just do the thing, keep going. It's not easy for everybody. I listen. Arden's got a perfectionist streak in her, and it's hard on her sometimes, right? My wife has it. My son has it. My daughter has I don't have it. I'm sort of like, well, I did it as good as I could do. I'll try again tomorrow, you know? And you can step back and tell people like, like, Look, I'm a successful person. I'm not holding myself to some crazy standard that's making me mental. When something breaks, I just go, oh, things break sometimes, like I don't understand any of that. I stay out of some of those conversations online because I don't want people because some cynical person will, like, paint me as an apologist. I saw someone kind of very upset the other day. They put on a CGM, and it was reporting a bad number for a couple of hours. And they were like, you know, and then the automated system gave insulin based on a number that wasn't right, and everything. And this is very dangerous. And people were like, you have to contact the government, like, you know, you need to tell the FDA. And although it's like, I was like, Oh my God, just get a meter and test the reason I feel that way is because, do I want Dexcom libre anybody else, to make their CGMS better and better? I do. I want them to keep trying, and I want them to keep making them better. But in this moment 2024 that technology is as good as anything it's ever stood on this earth. Do you know what I mean? And like to lose sight of the fact that your problem today was that your CGM reported 70 points higher than it was and you got a Bolus because of it is to ignore the idea that Sandy was peeing on a stick and had a 19, A, 1c, it ignores perspective. So yes, you want them to do better, and you want to hold them to a standard, of course, and you don't want things to be dangerous, but you can't act like this is some horrendous thing that's just happened.
Sandy Schwartz 59:49
Well, you can act that way, but it impacts your life and the people around you negatively. Yeah,
Scott Benner 59:55
yeah. Well, and meanwhile, you're bad mouthing this thing that is definitely keeping you. Much, much healthier than you'd be without it exactly. Go with the flow. It's not lost on me, if the thing said her blood sugar was 500 and she was a little kid and it gave her a bunch of insulin, it would be really bad. But, you know, you have a meter for a reason, you should check if it doesn't seem right, like you have to pay some attention to it. It's not
Sandy Schwartz 1:00:17
if the if it said 500 and you don't feel that's what it is, then you get out your meter,
Scott Benner 1:00:22
yeah, right, and it sucks, by the way, and it breaks up your day. And I get all that, but again, so does
Sandy Schwartz 1:00:30
other things, like a car accident or electricity going out. I mean, it's life, it's what we live with. This
Scott Benner 1:00:38
is my point. I think it's your point too, by the way, yes, yeah, just diabetes is unpleasant sometimes, but it sucks
Sandy Schwartz 1:00:47
it does it does it show what other things do too.
Scott Benner 1:00:51
But you have a large part to do with how it feels. I guess I don't know how to put that exactly like
Sandy Schwartz 1:00:59
you're you have a large part to do with how you respond to it, yeah, your attitude, how you emotionally respond to it, how you let it negatively affect your life, or not negative. I don't want to say positively, but whether diabetes is a hindrance or whether you accept it. I mean, we, I know I use that word a lot, but acceptance allows us to live our life in peace. Attitude dictates everything
Scott Benner 1:01:32
right? And then whatever situation you're in, there are happy people who make a $500 a year of living somewhere, and there are hap and it's, is it great? I don't imagine it is, but there are people who find a way to be happy in every situation. And I'm not saying that there aren't some situations that are so overwhelming that you can't like you know, happiness is hard to find, and obviously there is, but I'm often reminded that, like the poorest people in America, are some of the richest people on the planet, exactly
Sandy Schwartz 1:01:59
because they accept what they have and don't wish it was different. It just,
Scott Benner 1:02:03
it just seems, you know, I mean, it sounds kind of hippie dippie to say out loud, but you like Jimmy Buffett, so I figured it's okay to say to you, I don't know, like, if you're not a depressed person, if you're not altered in a way that just makes it impossible for you, then you can, like, I don't know, brace yourself, stand up, pull yourself back together again and and just try to have a different attitude and just accept that it's going to go wrong sometimes, and you have to keep moving. These are basic ideas that I think have been said over and over again for, you know, hundreds of years to people so
Sandy Schwartz 1:02:35
Well, I appreciate this opportunity to try to encourage people to look at their life as something to be happy about, yeah, and something to live to the very best. Well,
Scott Benner 1:02:50
look what you did, even like it's not it's nice to you to come and spend your time, but look at you. You were in a place like Sandy. I don't know you that well, but I looked at your email. You were in a place, you know what I mean. You thought, I wonder how I could turn how I feel into a positive for other people. And you said, mate, can I come on your podcast and talk about this? So anybody can do something like that in their own life? You know, just make a positive step. I think,
Sandy Schwartz 1:03:16
Oh, I never thought about that. No, you did. Oh, thank you. Yeah, you did
Scott Benner 1:03:18
the exact thing you're asking people to do so, put your money where your mouth is. Okay. All right. Hold on one second for me, Sandy, thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox this episode of The Juicebox Podcast is sponsored by cozy Earth. Cozy earth.com use the offer code Juicebox at checkout to save 40% off of the clothing, towels, sheets, off of everything they have at cozy earth.com Are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1020 Five Okay. Well, here we are at the end of the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Uh, why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app, go to YouTube and follow me, or Instagram, tick tock. Oh gosh, here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page you don't want to miss. Please do not know about the private group. You have to join the private group as of this recording, it has 51,000 members in it. They're active, talking about diabetes, whatever you need to know, there's a conversation happening in there right now, and I'm there all the time. Tag me. I'll say hi. The episode you just heard was professionally edited by wrong way recording, wrong way, recording.com, you.
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