#1961 Terrible People Live Forever
Terrible People Live Forever
An emergency room nurse was married to a man with type 1 for seven years and still didn't understand it. Then her daughter was diagnosed. She speaks anonymously about learning it late and managing it across two houses.
Jump to a moment
- She is an emergency room nurse who didn't understand type 1. Asked to rate her knowledge during her marriage on a scale of 0 to 100, she says 25. Her explanation is worth hearing: nursing school covers type 2 at length — insulin resistance, chronic disease acquired later in life — and touches type 1 only enough to say it's the insulin-dependent kind. In the emergency room, she says, some of what she absorbed turned out not to be correct.
- Seven years married to someone with type 1 still wasn't enough. He handled it himself and didn't ask her for help, which she now distinguishes carefully from handling it well. She knew to watch for lows and that illness ran him high, and not much beyond that — a gap that only became visible once she had to learn it properly for her own child.
- The diagnosis came through a urinary tract infection visit. Her daughter was complaining of irritation, so she took her in to be checked. There was glucose in the urine. Even then, she says candidly, she didn't register how significant that was — and when the physician asked whether the child had symptoms, she answered no, because she wasn't looking for the right ones.
- Managing it across two households is its own problem. The children are with her most of the time, so she carries most of the work, and when they're with their father she coaches by text — telling her daughter when a correction is needed. Her daughter can enter one herself, and guesses when she isn't sure. Nine years post-divorce, the two of them are still negotiating how this gets done.
- Her endocrinologist gives out a cell phone number. She credits a specific doctor who trusts her to adjust settings and says to call with questions — and notes that a different physician in the same practice would likely not have appreciated changes made without a call first. Scott's observation is that it takes very little to make an enormous difference to a patient. Nothing here is medical advice.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed.
- Juicebox Podcast Facebook group — The private community she credits with getting her started.
- Juice Cruise 2027 — The third annual Juicebox community cruise, on sale now.
Every word of the conversation
Cold open & sponsors0:03
Hello, friends. Welcome back to the Juice Box podcast. Nothing you hear on the Juice Box 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. Are you looking for a vacay?
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Why we're using an alias2:28
So normally, the person I'm speaking to would introduce themselves. And but instead today, I wanna let you all know that we are going to be using an alias for today's guest. So, I mean, we can pick a name together if you want, or we could just call you Jennifer Garner since she starred in the television show alias that I watched through the two thousands. What do you wanna do?
That's fine. Let's use that one.
You're gonna call you Jennifer?
Yeah. Sure.
Awesome. You know Jennifer Gardner's good friend, Victor Garber, has type one diabetes?
I did not know that.
Oh, now you know. I don't know what you're gonna do with that information. It's Jennifer, but we'll find out. Also, we'll probably never call you Jennifer again.
Right.
A nurse who didn't know type one3:12
So what brings you here today?
Well, I just thought my story was a little bit interesting. My daughter was diagnosed almost two years ago now with type one. Mhmm. And I work as a nurse. And even as a nurse, I knew very little about type one.
And I was married to a type one diabetic for almost seven years and still didn't know what I needed to know about type one diabetes.
Okay.
But after meeting with some friends on Facebook and starting to listen to the podcast, I quickly figured it out. But what I have learned in the process is there is a lot that goes into it, especially when dealing with a co parent and ex husband, you know, stuff like that.
Yeah. I wanna hear about that. But first, I have to understand, how are you married to a type one and don't understand type one?
For the longest time, he like, I knew type one was insulin dependent diabetic diabetic. You know? Like, I knew he had to have insulin all the time. I didn't really understand what basal insulin was and what you know, like, obviously, fast acting insulin, I know what that is, but he did not take the best care of himself. He did not have health insurance for the longest time before we got married.
I knew, obviously, to be prepared for if he had lows or something like that. I knew when he was sick, he would get high. But for the most part, he took care of it. He didn't rely on me for much, and there just it there wasn't a whole lot that I had to do.
Okay. So he took care of it with air quotes means he didn't ask you to help with it. Doesn't necessarily mean he was taking good care of himself.
Correct.
Okay. And vaguely speaking, what kind of nurse are you?
Well, I started out as an emergency room nurse, and I am now an emergency nurse.
But just but to say that you understood diabetes like, if if the understanding of diabetes was a spectrum that went from zero to a 100 while you were married, what do you think your understanding of it was?
Probably 25.
Okay. And
before Of type one diabetes.
Right. Right. And before you were married, was it about the same?
Probably.
Can you explain to people listening who are confused? I understand because I've been doing this a while. But explain to them in your words how you can be a nurse and not understand that kind of stuff.
What nursing school actually teaches5:44
Honestly, I think in nursing school, they teach more about type two diabetes. You learn about insulin resistance. You learn that most of, I mean, really, the majority of the diabetics that you're going to see are type two diabetics. Mhmm. You learn about diseases that people acquire later in life, chronic diseases, you know, with but they don't they teach you.
They touch upon what type one diabetes is. They tell you there's a difference. There's insulin dependent diabetes, and then there's this other kind of diabetes. And you really don't learn the specific of the of type one diabetes.
Sort of the extent of your educational. Then Right. Then what happens when you come across the person with type one? How does the how does your knowledge not grow? Is it just your time touching them isn't long enough, or is it that it gets dumbed down so much you don't think about it?
It probably just gets dumbed down so much you don't think about it. I mean, it's just really, after listening to the podcast, some of the things I learned working in the emergency room weren't really correct. But it was like, well, if you see a diabetic who has an insulin pump, I'll immediately drop it off. You know? Mhmm.
If they come in with I I I'm seeing my fair share of patients in DKA. I've seen a lot of them, actually. I've hung insulin drips quite a bit, but you don't really there's just certain things they don't teach you or you don't have to know, I guess, in an emergency room setting.
Do you think it's as simple as one day somebody with a pump on came in, their blood sugar got super low because the pump kept giving them insulin. They didn't need it. You know? They were unconscious or something. They got low, and then the rule became, hey.
When someone comes in with a pump, shut it off.
Right.
Probably. Yeah. Yeah. Like, it's just there's it's sort of this nonsensical, we saw this, so now we always do this thing. And then people say that out loud, and it gets what what?
It gets repeated and repeated. And when you hear it eventually, it just seems like a rule.
Yeah. Correct.
That's how all bad communication works. Exactly. Yeah. Yeah. So okay.
So you have little knowledge of it through your schooling, through your work Mhmm. Even though people some people might assume that seems crazy, but I I think it's I think it's reasonable to say that it's not, honestly. I Mhmm. I I just don't think people are I don't think humans have the capacity to remember everything they need to know about medicine and everything they might bump into along the way. And
That's true.
Yeah. But from the outside you don't have this experience because you've probably been a nurse for a long time. But if the outside, it is really confusing. You know what I mean?
Like Yeah. Yeah.
I don't know.
It is.
It Yeah. Sorry.
I mean, like I said, the majority of of diabetics the majority of things we learn in nursing school is about type two diabetes. Mhmm. My family has a history of type two diabetes. I had never really run into any type one diabetics. Mhmm.
And like I said, even knowing my husband was a type one diabetic, there was very little I had to do for him.
So so you meet a guy. He has type one. This doesn't put you off. You date and get married, obviously. You're thrown in with him.
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I really didn't know. I didn't know about the long term complications. I didn't know, about the difficulty with insurances and even, like, getting being able to get on to my life insurance. He couldn't even get life insurance through my work because of his history. Mhmm.
He I I mean, really, I thought, oh, okay. Yeah. I mean, he has to take insulin. He has a bag with supplies that he needs, so I knew that he had to have that bag with him. For the most part, he never he never really got low, that I really had to take care of much.
I probably saw my mom, a type two diabetic on insulin, get low more than I saw my ex husband have a low blood sugar.
Interesting. How long did you date before you got married?
Two years or maybe something like that.
So your total time together is nine, ten years right there?
Mhmm.
Okay. And you're do have a child with him?
I have two children with him.
And which one has type one?
The younger one. She is 11 now. She was nine at diagnosis.
How long have you not been married?
Nine years.
Okay. So you were together ten. You've almost been apart as long as you were together.
Correct.
Gotcha. And in the last couple of years of your marriage, you had your daughter?
Yes. I have
that math all correct? Okay. So okay. So is she diagnosed while you're married? No.
Oh, okay. Now that she's diagnosed and you have a different understanding of diabetes, what do you think his understanding of diabetes was?
I I don't I don't appreciate his understanding of diabetes. After learning about it myself and really looking into what my daughter needs and what I can do to help her, I don't appreciate the way he handles his care. I don't appreciate the way he handles her care. I don't know that he knows how to count carbs. I think he probably guesses doses.
Like and and and I've heard you say that you look at a plate and you see units, not carbs
Mhmm.
Which it may be what he does. And to be fair to him, I think when he got diagnosed, it was you're allowed to have this many carbs and this much protein and this much whatever per meal, and this is how much insulin you take Mhmm. I think. And that rule has since changed. Now you just dose for however many carbs you're gonna be eating.
But I'm pretty sure when he was diagnosed, that was how they did it. You know?
Had he had it for a long time since he was a kid?
He was 18 when he got diagnosed.
Oh, that's a tough time too. Okay. Well, do you know what his a one c's were like when you were together?
Finding out after the fact, I think they were tens.
Oh god.
Nines, tens.
Was he in the medical field as well?
He was an EMT basic for a while.
Okay. You people love to stick together in the matter.
He he wore many hats while we were together. That was part of it. He's very full
with it. Heard you say he couldn't keep a job.
That maybe.
Oh my gosh. Sorry. Do you think any of his issues came from his high blood sugars?
Yes.
Do you think he knew that?
Maybe he's putting it together now, but I I still think when we talk to him, he probably thinks he got the short end of the stick.
Meaning, this isn't the life I bargained for, so I'm just gonna sort of kick rocks and make For
me, I have the worst luck. Everything bad always happens to me.
Okay.
Yeah.
Do you see with with a lot of brain fog?
What?
Did he have brain fog, like, kinda confusion or, like, slow thinking with high blood sugars?
I I don't know. I mean, I was probably just so used to seeing him with high blood sugar. And for the longest time now I did know this. He always told me, I feel better when my blood sugar's in the two hundreds than I do when it's in the one hundreds. He always told me that.
Because And in my
Go ahead. Go ahead. I'm sorry.
Well and in my thinking, I always told him, if you kept it in the one hundreds, you would feel better in the one hundreds. But that was the most of my knowledge of at that point.
Like, was that was all I knew, but I still I got that right. What's interesting, it'd be it's like if I said to you, like, I'm much more comfortable when my pants are on fire. And you said, but yeah. But, Scott, eventually, you're gonna burn down into a crisp and die. I go, but I'm very comfortable like this.
It's a it's a a weird thing to like like like, well, I'm more comfortable in the two hundreds. It mean, I I don't know how to, like, exactly, like, wrap my confusion around something like that. You you know? Like, I don't I really don't know how to, like, articulate it. It's something horrible is happening to you.
And instead of saying, wanna remove myself from something horrible and put myself somewhere good, I'm just gonna say, well, I like it better here.
Mhmm.
That's very, very weird in human. But at the same time, if his blood sugars are elevated forever and ever, then maybe he's not the best arbiter of decision making and what's what's right for him. So then my question here and you've been divorced long enough that I don't think I'm gonna make you cry and, like, you know, up you know, change your life and everything. But Right. When you started to understand diabetes for your daughter, did you ever have a moment where quietly you thought, oh, that poor guy?
Like, I like, did you ever have that I wish I would have known? Like or he needed help and he couldn't do it himself. Did you ever, like, have a compassionate thought about that?
Actually, I I think we were probably too far divorced and in a bad spot when that came about.
Okay.
Okay. I did send him I remember listening to your specific episode where you talked about diabetes complications and picturing, like, the sugar on the table and it's granular and, you know, how it can destroy your blood vessels and stuff like that. I wanted him to listen to that, not only for himself, but for our daughter Yeah. And he never knew.
Because did did he give you a reason, or do you not have enough of a relationship, though?
At first, I thought he didn't listen to podcasts. And then I found out he does, but maybe not as fun.
That's one of my favorite things when people go, I I can't. I don't listen to podcasts. I'm like, I don't even know what that means.
Right.
It'd be like it'd be like if I said, hey. The secret to life is on a billboard over there, you went, I'm sorry. I don't look at billboards. Right. Why don't you just make an exception today and look over there?
Just a couple of episodes.
That's, like, I promise. You know what? What you need to know in about ten or fifteen o'clock.
We have people we really are a mess, aren't we? This is fast it's fascinating. Hey. I think there's something really important for you to do. Oh, I'm sorry.
Is it in a podcast? I can't do it. Had you sent me an audiobook, I would have definitely been able to listen. And everybody's stupid. Okay.
And and okay. I don't need to understand. We're not here to talk about your your marriage. Are you remarried now? No.
Smart. I mean okay. Can I ask you? How did you are you older when
you 43.
Were you were you older when you got married?
I was in my late twenties.
That's not older. What happened? Was he fun? Was he like, what how do you
He I've actually heard many, many people say this about their ex husbands or boyfriends or whatever, but he actually was the classic narcissist. So he was really fun and outgoing and charismatic and just confident, and he had all these qualities that were just fun to be around. And then they slowly started to disappear.
Was he handsome?
To me, personality makes someone more attractive.
My god.
So I thought he was attractive attractive then because he was so outgoing and funny and, you know, all the things. And now I look at him, and I am not at all attractive.
Can you imagine how dorky guys with good personalities and no look feel when they hear something like that? Like, you went with a like, you chose a guy who's not that attractive because he had a good personality, and then this is what happened. Great. We're over here.
People would some people would probably look at him and say he's attractive, especially in his younger days. He probably was attractive considered attractive.
I think what you're saying.
But, I mean, I'm
really like, this is obviously not about you, but I'm just trying to understand bigger picture. Plus, I have a young daughter. Like, you know what I mean? Like, what makes you guys, like, just be like, oh, that one. He's a but whatever.
Yeah. Like, I don't that's fascinating to me. Were you just in, like were you I I were you thinking, like, you wouldn't have a baby?
No. No? It wasn't for
baby fever?
At the time, I didn't even have children. When I look at even dating now, I it's not that one can fix him type of thing, but you try to give somebody the benefit of the doubt. Okay. But why He has this, but I think he's a good guy. Are we missing something?
Did Jennifer, did he have good Coke? What are we talking about right now? What was really going on? Please tell me.
I can't tell you. I think it was just his charisma. I really think that's what it is.
No kidding, guys. There you go. Get a wrap and head out there. Some poor lady will throw her life away on you if you want. Jesus.
You feel better now, though, that you're divorced?
Yes.
Good.
Yes. Yeah. Best decision in my life.
Don't even know what to say about that. I'm so sorry. I'm so sorry.
It's okay.
Oh my god. If my wife would leave, I definitely think that's what she would say. Oh my gosh. Okay. So your daughter's diagnosed.
Glucose in the urine21:09
Do you know like, do you see symptoms coming, or is it does it come on you?
I I didn't see symptoms. Looking back, I may have saw a few. But at the time, I did not see symptoms. She was having some, I don't know, possibly, like, yeast infection type of just itching, complaining of things bothering her down there. Mhmm.
So I
really just went in to get to see if she had a a urinary tract infection, and she had glucose in her urine.
Okay. And that was not quick.
Even then. This is embarrassing to Even then, I did not realize that glucose in the urine was that bad.
When you heard the word glucose, you didn't think, oh, that guy who I wasted a decade with, he we talked about glucose a lot. That that didn't strike you?
No. Okay. I mean, it okay. So the physician even said to me, okay. She has glucose in her urine.
“Is she having any symptoms?”22:06
It's not very much. And I was like, okay. And he goes, is there any diabetes in the family? And I said, yes. Her dad is diabetic.
And he said, okay. He goes, well, is she having any symptoms? And I said, no. She's not having any symptoms.
You should have said yes. This yeast infection.
Well, I mean, that and all I didn't know that was a a symptom. I didn't know. And he honest he let us leave. He was fine. He was like, okay.
I stop that for second?
Let me stop you for a second. There's a life lesson in here for everybody. I don't care if it's medicine, your finances, the guy trying to put a roof on your house, whatever. Please please hear me and take this forward in your life. No one knows what the fuck they're talking about.
Everyone is pretending to get a paycheck to get through. Think about yourself. You know you're in your job. Half making it up all the time. And then you go out into the world and see somebody else and go, well, they must know.
You know what I mean? What a weird you're a nurse. I'm not I'm not being hard on you. You're a nurse. That was a doctor.
You were like, my daughter, whose whose father has type one diabetes, has a yeast infection and glucose in her urine. That's probably nothing.
Well and I even think her pediatrician probably should have been checking her urine every year at her physical and never did.
Well, I mean, there's a lot of things that probably should have been happening. Correct. My point is when you get out in the world, you just see other people and you think you you just think they know what they're talking about all the time. Mhmm. You know, I sat down with somebody recently who's a like a I mean, they they work with money.
And they're they're they're just a friend. And I was chatting with them, and I asked them a question about, like, you know, markets and how things work and trying to figure out a way I can retire one day and all this stuff. And the answer back was almost like, no. I don't know really. Like, it was I'm like, hey.
You've doing this for twenty years successfully, and it's all just like, well, you know, it's a little bit of hoping and a little bit of maybe going in the story. I I just don't think there's a lot of situations in the world where you have to absolutely listen to somebody and say, well, they know. They're the principal of the school. They know. They're the school nurse.
They know. No one knows. The school nurse is at home doing heroin. Okay? Like or or what she's a regular person is my point.
This is what our doctors did to us, and I listened to you, and I think, my gosh. This guy figured it out on on his own.
And I'm an idiot. You know? You probably thought that. You're probably like, this moron. Jesus.
How bad did you feel when you realized I knew? You're like, oh god. What was I doing?
What I was begging for.
No. You're very nice. Go ahead. I'm sorry.
No. That's I mean, it it's true, though. It is. Like, we trust that these people know what they're talking about. Mhmm.
And he let us leave. We left. Fascinating. Yeah. When she was probably you know, she had diabetes.
At that point, we left.
Did it get worse after that, or did you were you able to, like, come back around on it quickly?
So it was probably a week's time. And the I wanna say the girls probably told their dad something about it. And I'll give him credit for this. He was like, oh, she's got diabetes. Uh-huh.
And I was like, she you thought your other two he had two children from previous marriage. I said, you thought they have diabetes. They don't she doesn't have diabetes.
Like, they I'm gonna be right eventually.
He he was was right. And so I did I got some strips, and I tested her at home when it was probably a week's time. Oh, yes. A week after that appointment.
Yeah.
I mean And she had large amounts of glucose in her urine. Very large amounts.
In fairness to him, he knows what poorly controlled diabetes looks like. So he was probably like, that really reminds me of my life, what you just said there. So Yeah. Wow.
Oh, I think tells me he thinks she was being alive. He thought she was drinking a lot. I didn't see it. I did not see those at all. Don't think so.
Even looking now, looking at it, I do not see those. She was very, very, very, very skinny. She didn't lose weight, but she was very, very skinny.
Okay. Are you hey. Was he older than you?
By, like, three years.
Yeah. And he already had a couple of kids with another lady when you met him? Girls, again, the these simple the rules are simple. Okay? They're very simple.
If if someone else in the sisterhood couldn't take it, why do you think you're gonna be able to take don't understand.
Well, you get those stories about how terrible his ex wife was and what she did to him and how it wasn't fair. And
I bet you tell some stories about you.
I know. I am now a greedy, and I am okay with that. I'm not
laughing at you or anybody else. It's just the whole human condition is ridiculous. Mhmm. Because he could have just you know? I don't know.
You could just be nice to people and try to make your life work. It's not hard. Yeah. Okay. Right.
Wow. Okay. So, yeah, a week later, you he figures it out or, you know, pushes. You go back. Do you end up in the hospital, or what's the the beginning?
I I called the doctor's office. I got her scheduled for labs first thing in the morning. We went in and got fasting lab work, and then we met at the doctor's office for an appointment. And as we're, like, in the waiting room getting ready to go back, her a one c comes back, and it's eleven point two. And I was like, oh, crap.
Mhmm. So, I mean, I knew it. I you know, at that point, I knew it. But so we go back to the doctor's office, and, obviously, they they were like, okay. Well, let's let's stick her finger again, and let's see what her sugar is after you let her eat.
Let's see what you know, obviously, it was high. It was in the three hundreds. And like I said, her a one c was 11.2. And Yeah. And she goes, what do you wanna do?
Do you wanna get admitted to the hospital? Do you want me to just call endocrine and just see if they can fit you in? Like, what do we do? And I was like, I at this point, I don't care as long as we get her taken care of. Mhmm.
If you need to admit us, you can admit us. But she sent us home. She said she'll call Endocrine, and I before we even got home, I got a phone call that said, if you can get there now, just turn around and drive to their office, and they'll see you right now.
Is that a professional courtesy, do you think?
I don't know. Okay.
So okay. So now here it is. He's gone. She's diagnosed. You don't have any comfort that he understands what he's doing.
You now recognize, holy, you don't understand what you're doing. And then where where are next steps? Do you just, like, lean into what the doctors tell you and just hope for the best? Or like, I'm I'm really interested how you, like, psychologically pick through those first months.
So the very first month, I probably was leaning on his knowledge because I too was afraid of what happens if she gets low more so than what happens if she gets high. Mhmm. Because I didn't know. I didn't know how bad it was if she got high. You know?
So and they teach you a little bit about counting carbs, and they teach you I mean, we were in that office for probably four hours before we came home, and I still left there feeling like I did not know anything. You know? But I got you know, you they go downstairs to the pharmacy and fill all of these things, and then the pharmacist is like, this is glucagon in case she passes out. And I was like, then I'm balling in a pharmacy in front of a stranger. You know?
Why would she pass out? Like, yeah. Like, what what wait. What no one mentioned that. Yeah.
Just
There's this thing you don't think about. You know? So in probably in that first month, I was more afraid of low than high. And I did like, he he would come over, and he would say, okay. This is, you know, this is what she's having for supper.
Learning it from scratch30:02
This is what we need to, you know, dose her, and he was trying to make her feel more comfortable. And he did let me know of a few, like, apps that you can count carbs with. And I felt comfortable having her in his care because I knew that he wasn't gonna let her get too low. But then after that, I started doing my own education and getting more comfortable with it myself and and finding out these things. And then I was like, oh, okay.
What what makes you, like, let go of what you're told in the beginning and the comfort of, well, he won't let her get low, and you don't really know the the, I guess, the weight of the outcomes that he's been having his whole life. So what makes you look for more? Do you see something, or is it a somebody say something to you? What what what opens up the door for you?
Originally, my dad was telling me about a child in our hometown that has type one diabetes. And he's like, I'd like you to talk to her. You can talk to her. I'm sorry. What's her name?
Did you? Yes.
Oh, okay. Take that out.
Talk to her. Mhmm. And, you know, you can talk to the mom. And so I met her at one of the basketball games for our hometown basketball game. And I did speak to her a little bit, and she got my phone number, she texted me.
And she said, I follow this group on Facebook. It's moms of type one diabetics. So I started following that group on Facebook, and that is what got me started thinking, okay. There is so much more to this Mhmm. That I need to know and I need to understand.
Well, god bless your dad for realizing that you married a dummy and that you are now listening to him about the god the granddaughter. And he was like, listen. If if she wants to ruin her life with him, I guess I can't do anything about it, but I gotta stick up for the kid. That's what your dad's doing. Right?
Right. Yeah. Yeah.
See how how ain't that nice your dad was still looking out for you?
Yes. Absolutely. He does. He is I should've married a man lying in my desk.
Well, I don't wanna ask you why you didn't, but I'm assuming there's a reason. But but no. I mean, seriously, like, that's lovely. Like, there there's your dad kinda stepping back and going, okay. You know, I haven't said I'm sure he said stuff over the years, but he he stays out of it.
You're divorced now. Whatever. But now that he sees you're gonna lean on the husband, the ex, for the care of the of your daughter, he's like, no. No. No.
We're not we're not doing this. Wow. Look at that. Did you ever thank him?
Oh, yeah.
Yeah. That's awesome. Very cool.
And and from there, then I get, you know, introduced to the Juicebox podcast. And I I think probably at the time right before I got introduced to that woman from my hometown, I was probably more recognizing, like, hey. She shouldn't be this high all the time. Mhmm. We should probably be, you know, giving more insulin for some of these things, or, you know, there are definitely things that I was looking at before, probably, I got in touch with her, but that really solidified it.
Can I ask you a quick
I don't wanna, like, denigrate anybody because I don't mean for this I hope this isn't how it comes off? But I do not freak frequent's the wrong word. I do not go into other Facebook groups. So I've just a long time I mean, you know, when I was a parent, I was, you know, members of a couple of them. But once I started doing my own thing, I thought, like, they don't want me in there.
Like, it feels predatory. Like, you know, he's trying to drag people to his group or whatever. So I I never wanted the the the appearance of that, so I just I don't I don't get involved. But how how is it that inside of a a group for people with type one diabetes or parents of or whatever the group is, like, how come my thing still gets suggested? How come the answer doesn't live in there?
I think sometimes the answer lives in there. There are a lot of knowledgeable people in there.
I imagine. Yeah.
But but your stuff get your stuff is very popular in the type one diabetes world, and it gets mentioned. I think probably the answers some of the answers are in that group because some of the members in that group have listened to your podcast.
Okay.
Have
okay.
I I think it some of it overlaps. Probably not all of it. There might be people in that group that don't listen to the podcast, and there might be people that you know, I I think but maybe a lot of people just get their answers from experience and stuff the way you got your answers, but I think a lot of people listen to it as well.
I see. I'm I'm outside of that. I really do live, like, in a bubble around all this on purpose. Because every time I try to, like, be out in the world, like, somebody yells at me. So I'm like, okay.
I don't need this. I yelled at the other day by somebody I like, and I was like, you know, who I thought I was like, what is happening? I I just I'm trying to help. Okay. But I just didn't under like, it just occurred to me.
Like, you don't take your car to a mechanic, and the mechanic looks at it and goes, okay. Great. We're just gonna take this to a different garage.
We're gonna
get it all set up. And, you know, like so Well, okay. I I'm I'm just gonna accept your your compliment and say thank you. I just wasn't sure why that that struck me as strange. But
Legitimately, in this community, there are people that just want you to be helped. They want to help you. And the if the best way to help you is to send you over to your Facebook page with your podcast and your information, then that's what you do.
Yeah. No. I feel the same way. When people suggest other stuff inside of my Facebook group, I'm like, yeah. I mean, if it's helping you, tell somebody about it.
Mhmm. It is hard. Like, in the very, very beginning, I can see the the feeling of, like, oh, I built this thing. I believe the answers are here, and now you're telling somebody to go somewhere else. It it's hard to swallow at first, but you realize that if you're really in it to help people, it doesn't matter.
And they all you know, people are you know, just because I say something, maybe they wouldn't understand me or like me or whatever. Let them go find it somewhere else. Why why would you stand in the way of that? So okay.
Two houses, two approaches36:04
No. Even so, I bet they probably wouldn't completely abandon yours for a different one. I bet they would probably still listen to both or do both.
You know? Why is that? What's it about that Facebook group that I made that's like, what what's attractive of are you in it? I imagine you are.
Yes. Oh, yeah.
In Is what's attractive about it, though?
Just the the knowledge base, the the people that and if you ask a question, they can tell you exactly what episode it's on. Mhmm. Or, you know, it just yeah. It
It really
does an incredible resource.
Yeah. Well, thank you. Mhmm. That's nice to know. Mhmm.
Okay. So you start figuring out that this ain't right. And then you tell your ex, and he's so happy that you're taking good care of your daughter. And not only that, but he wants to transform his own health and happily ever after. Is that
what happened? Something not quite like that.
Okay. Go ahead.
I he doesn't appreciate the way I manage her diabetes. He thinks I let her sit too low. He thinks like, I I even measure out, like, here's a little baggie, and I put six Skittles in it because this is how many Skittles you need to bring your blood sugar up from a low blood sugar. Okay? Like, you don't need 70 Skittles.
You don't need 30 Skittles. You need about six. You know? And he's telling me, you don't know what it feels like. You don't understand what it feels like to have a low blood sugar.
You'll never understand. You know, I know what it feels like. And I'm like, why? I I probably, at some point, have had a low blood sugar in my life, but maybe like, you're right. I do not understand these severe hypo episodes.
But I also can promise you it probably doesn't feel good to go from 60 to two forty in a matter of twenty minutes because you overdosed for a low blood sugar.
It's also not gonna feel good in twenty years when your heart pops or something else horrible happens.
Correct.
Yeah. Yeah.
So Correct. She had an a one c of five point four, and she was so excited. And she comes home, and she calls her dad, and he said, that's too tight of control. And I asked, can you just be happy that your daughter's healthy?
Or go to
school, maybe?
I would maybe see a therapist.
Right.
Well, jeez. You can pick them. Is that why you don't date anymore? Did you think I was I'm just gonna just gonna pick another one like this?
Just are not good options out there.
Did you did you try for a little bit? Yeah. I
mean, I do try.
Oh, you still do?
I dated someone after that for two and a half years, and that just didn't work out either. But maybe it's me.
Listen. I had a guy come on the other day, and he's like he's been on before. He we went all through it. So you guys probably if you're listening to this now, you probably just heard it recently. And if you didn't, please just listen to the podcast.
I work really hard on it. But he comes on because he'd been on before to talk about, I was on this pump. That pump sucks. So I went to this pump, and this pump sucks. So I went to this pump, and I'm really happy now.
Then he wanted to come back on to talk about how that third pump sucked, but then he tried a fourth pump, and that one sucked me. I was on a fifth one. He doesn't think it's right. And he starts talking, I went, hey. Hey.
Hey. Hey. It possible you're the problem? And then we had a lovely conversation where he was like, oh god. It is me.
And I was like, yeah. Yeah. Yeah. No. It's definitely you.
Yeah. I don't it's so funny. Actually, you know what? Go ahead.
That pop is only as good as its settings, I think. But
Yeah. Right. Exactly. I'm like, I don't think they all kinda work about the thing. Yeah.
No. Listen. I've been married this summer. I'll be married thirty years.
And
and my wife is, like, very smart and, you know, thoughtful and has a ton of, you you know just she's very she's just a very smart girl. Like and and you know? But she's also, like, very opinionated and pushy and, like, all those other things that Right. I'll joke about all the time and say, like, oh, like, I'll joke and say, next time, I'm just gonna get somebody that nods and just go, you know, okay. Is that what we're doing?
And, like, you and but because that's never happened to me once in my entire life, and I do wonder what it would feel like for someone just to look at me and go, good idea, Scott. I like you. Like so
but having I mean, I
Go ahead.
I no. I think it's nice sometimes to to meet a guy or a person that that knows what they want and to make decisions so you don't have to make all the decisions.
Yeah. Yeah.
Because being the primary decision maker isn't all that fun.
I definitely know girls don't wanna decide stuff, especially food
and things like that.
But Right. But I'm telling you, if my wife disappeared tomorrow and I started dating, I'd go find another girl like her. I don't know what's wrong with me. Like, well, I don't know why I wanna be treated this way. It
must mean you picked it right the first time.
I don't know. It's like it's like three times a year, she'll be like, I love you. And I'm like, oh my god. Are we doing that today? I was I didn't know we were gonna be feeling today.
She's gonna I'm sorry. I'm painting her in such a bad picture. I'm just saying that, like, she there's a type. She she has she is a type. And as much as, like, I sit around and go like, oh, no.
I don't know. Like, it would be nice to see what the other side was like, When I really start to think about it, I don't I think that would make me crazy. Like, if a girl ran around behind me agreeing with me all the time, I think I'd be like, oh, why are you doing that? Stop. You know, like, have your own thoughts.
And I'm Right. I'm interested in what you think. But, you know, so I can it's fun to complain about, but then you get back into it. I know I do the same thing yet. Anyway, that's my point with you.
And so you're just gonna end up with that guy again and again and again. So therapy for everybody.
Yeah. Right.
Yeah. Exactly. Go for because you're still young.
Reasonably so?
No. I mean, listen. They told me that AI and GLPs are gonna keep me alive, but I'm, like, a 110. You're gonna be going for a while now. There you go.
You're gonna need a guy to cut the lawn at some point.
That's true. I it does get tiring cutting it myself.
I was gonna say, aren't you sick of that?
I am. Tired of getting a single lawn grass. But I like the way I do it too, so I might have a hard time working with somebody else.
For years, my wife told me I was cutting the lawn wrong when we were first married. I'm like, what are you basing this on? And she's like, oh, the way my dad cut it. I was like, I don't know. Your dad doesn't seem that great.
I was like, I think I could
It's true. I have to load the dishwasher a certain way because my dad had to load the dishwasher a certain way.
That's what I'm saying. It's all ridiculous. Yeah. Then mostly, the dishes will come out clean unless you're one of those horrible people that lies them flat and doesn't understand anything. Yeah.
But I I had I was I've never said this on here before. It's been long enough. It was Thanksgiving, and we were at our house. And it was you know, everybody helps with the dishes a little bit afterwards. And so I'm rinsing dishes off and then putting them in the in the dishwasher.
And my sister-in-law was baffled by that. And I was like, what well, I don't understand what's going on right now. She's like, why are you washing them to put them in the dishwasher? I'm like, well, there's, like, chunks of food on them. It's not a magic box.
It's a Exactly. It's a box with a hose inside of it
that's that's, like, going Food's gonna go somewhere probably at the bottom of your dishwasher.
Yeah. I was like, wait. What are you okay. Then And I was just she was baffled by that. I thought, oh, world's interesting.
Anyway, so and she's a lovely girl. Just saw it the other night. It's her her birthday. So okay. So now the kid's moving.
Nine years later, still negotiating43:36
You're understanding better. What's the difference like? Like, you're you you have her lower stable. You've gone through the personality problems of him, like, giving her crap about her lower a one c, all that stuff. Like but where are you now?
How did you get to where you are now through all of that?
We're I'm not at a great place with him. We're still dealing with stuff, me and him. And even, you know, nine years divorced, we're still dealing with stuff. But, the children spend most of the time with
me. Exactly.
So it's easier for me.
Yeah.
I'm I'm the one in charge of most of it. During his times with them, he is the you know, he has to manage it, but I can text her and be like, hey. He needs to take a correction. That sugar is way too high. He needs to bring that down.
And and she can. You know? She knows how to do that kind of stuff, and she'll type in a correction. And if she doesn't know, she guesses.
That's that sounds exhausting to still be involved with somebody who divorced and nine years later and be fighting still. Could you guys have just gone on a family cruise and he fallen? Wouldn't that have been okay?
That might have been okay. But I've decided terrible people will probably live forever.
It's what he's saying about you right now. It's just something. He's like, this one won't leave me alone. Yes.
Correct.
So so, okay. So you still have difficulties. And by difficulties, you mean, like, as easy as, like, please don't let her overtreat her low. You know? Like, let's not leave her blood sugar so high.
And then isn't that confusing for her? Because isn't she managing one specific way with you, and then she goes to him, and then it goes out the window? Like, how does she
She came home one time, and she said to me I said, oh my gosh. It it kinda got high there for a little while. What happened? Oh, the crumple takes it. And I said, oh, no.
We don't say those things. Like, I know it will eventually, but there's no reason to sit there with a high blood sugar for hours and hours and hours. You're just hurting your your, you know, poor little blood vessels and stuff. And there's only so much she understands, but in her mind, she wants to be healthy. She doesn't want to die, and I'm not trying to, like, you know, scare her into you're gonna die if you don't take care of yourself.
But she wants to live a long and healthy life, and she wants more than anything to be a mom. And I said to her, you have to take care of these things if you wanna be a mom. Because if you wanna get pregnant and have babies, that's how we have to do it, is we have to take control of these things. And That's good that you brought that up with
her so early. That's that's why I we were just talking about that we. I just said we. I think I'm talking about my AI box. Sorry.
Hold on a second.
That's ridiculous. I just I just did a thing with my grand round series and pulled out, like, a bunch of lessons from it. And I'm just turning it into social media. And one of the things I can't believe I said we. And one of the things that that it pulled out about pregnancy was talking about like, it it was obviously in a conversation I had already.
And it was talking about about we we were talking about, you know, telling young girls early on, like, give them the expectation, like, so that it's not something they're trying to figure out, you know, when they find themselves pregnant or the minute they decide, like, oh, I'm gonna get pregnant now. Like, they they understand that this is a goal for the future. It's interesting to hear that you actually did that, you know, in your own life. Mhmm. Mhmm.
How'd you end up being such a good parent? Jesus.
It's hard. I also I I don't you know, obviously, I don't wanna sit here and talk crap about their father. But I have said things like, I know, like, I know he cries sometimes. And in all fairness, when when he was diagnosed, they did things a different way.
Sure.
So he doesn't necessarily understand this or this or this. But, you know, your daddy's had a lot of heart catheterizations, and your daddy has had poor wound healing from his surgery, and and your daddy is pretty much on the verge of, like, kidney failure. Like, there are things that we don't wanna do the way daddy did it because we don't wanna end up that sick.
How does he defend his opinion versus his outcomes?
I don't I don't know that he correlates all of it together.
Really? Is he is he what they call?
I mean, I think, again, it goes back to that poor me. Like, I just had the crappiest luck. Can you believe?
Oh, this is what my surgery?
And and now I have to have surgery again. Because it didn't heal right.
So it's not my decisions that leave me with poor healing. It's
Mhmm.
It's woe is me. This this stuff keeps happening to me. Right. Oh, and he and and you've at some point I mean, you sound angry at him. So at some point, you've blurted out to him that this is his fault.
Right? Like and so he doesn't yeah. No. I know you did for sure. I've been married for a long time.
I my wife likes me, and she would do that to me. So I assume I assume that you did it already. But but when there's no, like, come to Jesus moment for him there? He doesn't pause or nothing.
I mean, he tells me that he's gotten better. He went back. He got insurance. He got a pump. He got or he was on a pump for a long time, but he got CDM finally to talk to his pump.
No. No. I'm going all the time, and I'm getting my a one c down. I'm getting my a one c down. And then I think it has kind of lapsed again.
I think he got tired of it. And maybe he ran out of money to buy some GMs.
Can I tell you if I talk to him, I bet you I'd I would have it's fun? You know, listen. It's fun through your perspective. But, like, if I if I had a conversation with him and never met you, I bet you there's a a real story in there that would break your heart. Mhmm.
You know?
Probably.
Yeah. Even if, like, even if he's made bad decisions along the way. Like, still, like Mhmm. I I take I I would take his point. He was diagnosed a long time ago.
The ideas were different. He was diagnosed at 18. Doesn't sound he didn't go to college. Right?
Right.
Right. So he jumped right into the working world. Like, it sounds I bet you his parents didn't help him much with it. If they did, they probably didn't know what they were talking about because nobody did at that point. Things changed over the years.
What her daughter can do herself50:05
He didn't pivot with it. He starts having bad out poor outcomes. You gotta start protecting your psycho your psyche eventually because when you start realizing it's your fault, that's a that's a tough pill to swallow. You you know what I mean?
Oh, yeah. I can't need the insurance. I mean, insulin is expensive.
And These are the reasons
are expensive. And I mean yeah. Like, that's that's my fault. It's
right. Yeah. Yeah. Yeah. And by the way, a lot of that could be completely realistic.
And yeah. It's just it's just a terrible situation to be in. But It is. But for you, from your perspective, your main concern now is that this doesn't bleed over into your daughter's life and become her her situation too. Yeah.
Correct.
So so I guess then because I heard you say you don't wanna speak poorly of them, and and and I appreciate that because, you know, my parents were divorced too, and it's not fun when they
Yeah. I mean, I probably was very bitter in the beginning.
Oh, sure.
For part of your life. Wait. Take this with your life. Will admit that it is hard to sense yourself in front of the children. So Well,
yeah. You probably also don't want her ended up with a guy like him. Correct. Which she's probably gonna do because it's her dad. You know what I mean?
Although it didn't happen to you. You ran you said it, Your daughter's gonna end up with a jerk, and you ran away from a nice guy. We're all screwed. How do you think of that? But Right.
But so that is the real goal there, right, is that, you know, she grows up understanding without overwhelming her, you know, the the realities of what's going on, that you're gonna have to get her through, like, her teen years and through, like, her college age and and somehow be a a good partner to her till she ends up in her twenties because, obviously, you could've used somebody in your mid twenties telling you what to do. And Exactly. Trust me. I I should've I so I needed somebody too. And and then and then you have to, like you know, you have to you you you find a way to be involved without overwhelming them or being too involved.
And it's very, very difficult. Like, it's very difficult. If you think this thing is about, like, is about, you know, oh, I figured out diabetes, and we know how to bolus now, and my kid's eight, and it's going along, and that's great, you're out of your mind. Because then your kid's gonna turn 12 or 13, and there's gonna be a rebellion age in there, and hormones are gonna come, and that's gonna be another thing. And then just when you think that's over, they're probably gonna wanna smoke cigarettes or vapes or whatever these freaking kids do now.
Definitely gonna be weed if they've seen what's going on. And then you're gonna have to make yourself through that. Then they're gonna start to drink or not and then have sex or not and then go to college or not and then meet some dickhead or a nice per who knows? And then blah blah blah. And then the and if you get the girls, they're gonna wanna have babies at some point.
I mean, you think this is stopping, and you're wrong. Right. You know? Like, it's it's about it's about being flexible, seeing the problem in front of you, and trying as hard as you can to be as good as you can about it. And then just keep, you know, keep being there for people and showing up.
I hate to say stuff like that, but you gotta keep showing up for people. You gotta find a way to forgive each other, you know, to be kind even when you don't wanna be, and, you know, just shoot for the best every day. And some days go incredibly bad, like, poorly. And you gotta be able to, like, shirk that off and keep moving. And, you
know Exactly.
And if you can't, then some of these things are what happened. So I don't know. And then you're involved with other people, and they get to make their own decisions. And that they're not exactly on board with, like, doing the thing or, you know, being happy or, you know, they're not as enlightened as you are or vice versa. I don't know what you're supposed to do.
You should've just I don't know. Maybe they should make sex maybe they should make sex robots. You know?
Yeah. I I mean, I've had conversations with her. I mean, we still talk about it. I told her I'll be here for her as long as she needs me to be managing what I can manage from my end. But, yes, eventually, she's gonna have to to do it.
You know, she's gonna have to make decisions. She's gonna have to, you know Yeah. Hopefully, I'm around for a while.
What do you think about her personality? Do you think she's think she's wired right for this? Because, you know, I I've come to look like, imagine after talking to so many people that also some of this is just it's not within your control. Meaning, like, you are the kind of person you are, generally speaking. Mhmm.
Some people are just more you know?
Yeah. She's a very spunky child. She always has been my spunky, outgoing like, she went to school and loved it because it was social out of her. And then, oh, by the way, we're I think we're learning in the background. You know what I mean?
Like, she loved interacting with, you know, people and and all that. She was my very spunky child. Since diagnosis, she has dealt with a lot of anxiety problems, getting made fun of. I mean, the school is not as fun for her anymore. There are a lot of things that are very, very hard for her, and she gets very nervous doing.
But I think that she has a very strong personality, and she is I I she's very strong. She is a very strong girl, and I think she will get there.
Yeah.
She's just young, she wants to have fun. It's hard to have fun when you have this, you know, that that you have to deal with in the background.
Yeah. And then and then being kids on top of that.
Right.
How old is she again around?
She's 11.
Yeah. Oh, it's probably not gonna get better right right away.
Yeah. Some
some sometimes these girls are very mean to each other. Mhmm. These boys
are mean to each other.
Yeah.
Boys. Mean.
Boys just hit each other usually. That's better, honestly, because that ends, you know, pretty quickly. And then you just have resentment, and it's quiet in the background. Jeez. No.
No. I've seen some I've seen some mean kid stuff with, you know, my kids, their friends over the years. And and you're right. If you keep going, it all does sort of work itself out. You know?
It's not it's not like it's I mean, unless some of you were out there still living through middle school and high school as adults, and then I I would tell you that's a different problem. But
Yeah.
Yeah. Wow. What pump does she use?
She's on the same Moby.
The Moby. And you like it?
We love it.
Okay.
Good. Good.
What is her A 1C, did you say?
Well, her last one was 6Point2. But since diagnosis, we haven't been above a seven since her follow-up. She's had 6Point2, 6.3, 5.7, 5.4. Just kinda we're there in the, you know, five, sixes low sixes now.
Oh, good for you. That's awesome. Mhmm. What what's the key? Like, what what where what do you think like, if you had to boil down your daily regimen to, you know, the the small things that keep you in that situation, what do you think they are?
Settings, and being trusted to change them57:07
Pre bolus in breakfast, especially, is our big one. Breakfast pre bolus is huge. She doesn't necessarily have time at lunch and school, which we need to figure out certain things that way, but she's still insulin resistant in the mornings. Pre bolus thing for breakfast is huge. And then we correct a high.
We don't sit on a high blood sugar. Mhmm. If I see it climbing, I'm gonna grab it before it goes high. I'm you know, I I don't sit on it and say the pump will fix it. The pump will bring it down, and we'll give her a correction.
I I you know, and I have her pump set to alarm her at school. I can't necessarily see it. I can follow, you know, what her numbers are, but she can't I can't get ahold of her unless I call the school, and then school calls the classroom, and then she gets all embarrassed and whatever. So I told her, said, your alarm is gonna go off. Your alarm goes off because you've been high for however many minutes, you need to take a correction.
And she does.
Cool. You're not allowed to text her?
I am not allowed to text her. No. Just
happened, and then nobody knew.
Yeah. We've been working on her accommodation plan. It's a private school. There's you know, we don't do five zero fours. I'm still having I'm still finding that now with the five zero four.
But there's no school nurse. There's, you know, there are things that and they they have snacks or something in the middle of the day, and she's not allowed to call me from her phone to find out, you know, how many carbs are in it. And I was like, you planned that snack, she can call me. Well, she can call you from the office. She's not walking all the way down to the office and just not on the party because you planned a snack and didn't tell us.
What's the difference about where she calls you from?
It's not gonna be her kids if she has a cell phone.
Oh, boohoo.
You wanna talk about fair?
Yeah. Tell those kids, get an incurable autoimmune disease, and then they can have a phone too and use it whenever they want. Perfect. Exactly. Yeah.
Makes total sense to me. I love it when people don't make sense. It's my favorite thing.
Even older older kids look at her and say, oh, that's not fair. She can just carry a dog. I was like,
what? Douchebag. Hanging around there. You're children are assholes. Just wanted everybody.
I just want you to know. You're out there just being little douchebags every which way. Can you imagine caring about somebody else's cell phone revolving around their ability to take care of their their health.
And it's not like she's on Snapchat or any social media or doing anything fun with it throughout the day. It is there for her blood sugar.
I don't know how quickly humans' IQs are rising, but I'd like to go to sleep and wake back up when they go up about 30 more points.
Jesus. Yeah.
Exactly. Oh my god. Alright. Well, this is depressing. I mean, I appreciate you sharing this with me.
Can we call this do you think we can call this episode daddy issues?
That'd be fine.
K. I mean, I'm definitely doing that. Tell me what else we should have been talking about that I didn't because I know I took you in a way you didn't expect. So what what did you
from here. I I appreciate that you have a way that you that you take things. They're just just a way of managing Finding out you know, I didn't know for the longest time that I could have been getting Dexcom cheaper through a DME company than I was through a pharmacy. And, you know, being the insurance holder, you know, I I you know, all of these things, like, having insurance, first of all, I should not have to pay as much as I do for insulin or Dexcoms or any of it. You know?
And then, yeah, again, dealing with cost sharing and stuff like that with a co parent that doesn't doesn't like to lend a lot of help in those directions either. I mean, it's it's a lot. You know? And, yeah, I just I wish I would've known from the beginning. Hey.
I need to call the insurance company right now and find out what is the best way to be getting this or this, or how do I handle I mean, I don't know. Maybe I could be getting insulin cheaper if I didn't use my insurance. I don't even know. You know? It's it's crazy.
It really is.
Yeah. Well, what what happened? You're just talking to somebody one day online, and you're like, oh, wait. What what is this now? Is that how you figured it out?
Well, they they said something about it being covered through DME. And I was like, what is DME? Mhmm. And they're like, oh, it's durable medical equipment. I was like, okay.
And then again, I'm still picking up these Dexcoms from a pharmacy. And I was like, okay. But I thought these were supposed to be covered better. Well, they're covered under DME. Somebody tell me what that means.
You know? And then I finally had to realize there are, you know, durable medical equipment companies, and then I had to call them. And even the insurance company will say to you, yeah, that's covered under DME at 18%. But they won't tell you, you're getting them out of pharmacy. You need to call this company that we work with, and this company will get them to you cheaper.
Yeah. You just have to start looking around.
Yeah. No. It's a lot to have to do when all this other stuff is also stuff that you have to do. Mhmm. Yeah.
I mean, there's only so many hours in a day at at some point. You you know? Correct. What are gonna do? I listen.
I just picked up I just picked up Synthroid for my wife at the at the Walgreens, and Mhmm. It was way too expensive. And I know we can get it mail order cheaper. And I left there, and I thought, let me let's go home and, like, set that back up again. Because we had it set up, then my wife changed jobs.
My wife is the responsible adult in our relationship. She has, like, a job with insurance and stuff like that. And she doesn't make a podcast.
But I'm sure your contributions are quite quite a bit.
We're doing okay. But still, like, it's just it's you know, she's like the or she's like a real adult. And and so she switched jobs, and we, you know, we just kind of they switched, you know, mail order pharmacies. And we just never switched it back. And I thought, oh, I'll do it.
I'll do it. I'll do it. Now I realize she's had this new job for, like, four years. I've probably paid I'm not even kidding. I've probably paid hundreds of dollars in Synthroid that I haven't had to pay over the last couple of years just because, like, I just haven't been able to sit down and do I have to listen.
Today, I gotta get my kids have to get new doctors today. Arden needs a new endocrinologist because ours has a life, apparently. And I tried to explain to her that that wasn't okay. She didn't listen. I really did.
I said to her, hey. You've been married a long time. You've probably had enough of that guy. Why don't you just let him go and you stay here and be our doctor? She laughed and said, no.
I think I'm gonna go with him. And I was like, I mean, to each their own. You you know? Right. Can I can I tell you that that our that Arden's doctor who, you know, helps my whole family, who's who's doctor Benito from episode four thirteen about the thyroid stuff?
She is such a lovely person that that her practice is holding a going away party for her that's being attended by hundreds of people. It's a surprise party. She doesn't know. And hundreds of people have RSVP'd to come say goodbye to her at this party. It it just it just kinda goes to show, like, what could happen if you just put people first and like, she's a successful happy lady.
And, you know, like and I I watch her, and all she seems to do is care about the people she's helping and put an honest effort into it. You know? Stays up to date on things, isn't afraid to try to help, will talk to you. You know, like, you know, talking about your your freaking kid's school that won't let her call from one phone but can call from another phone because we don't want people to be upset. So, lady, if I texted her and said, hey.
I got a problem. She text me right back. She never told me it was okay to text her. You you know what I mean? Like, she's a she's a person who who at one point when Arden was getting started on on GLP meds, it was back before, like, you know, we weren't gonna get it covered.
She's like, I have samples. You can come get them. And Oh, wow. And then I said, oh, okay. Well, on Monday, I'll come down.
She's say, to my house and get it. It's fine. And then just texted me her phone number. You know? Like
That's amazing.
Yeah. Like, just a good person.
An endocrinologist who gives out her number1:05:14
And Yeah. I I love our endocrinologist, and she she makes me happy because she she trusts in some of the changes that I make on her pump and on all her settings. And she's like, oh, yeah. You know, you change them. If you have a question, can call me.
If not, you know, I I trust that you're gonna, you know, figure out what you need to know on that. I think if I would have gotten one of the other doctors in that practice, he might not have appreciated some of the changes I made without calling him first. Mhmm. We really do have wonderful endocrinologists that we see. But I haven't had doctors in the past.
I'm just like, oh, you shouldn't have waited to call through the office. You had a problem on the weekend? Here. Here's my cell phone number. Yeah.
Like, those those people are wonderful. They're fantastic.
It's super simple to make a to make an impact on people. And, I mean Mhmm. You know, just the other day, I I had a person ask me the other day, how did you like, how do you keep this podcast going so long? Podcasts don't last this long is what was what somebody said to me. And I was like, oh, I'm like, it's simple.
Like, I get up every day, and I think about, like, I wonder what would help everybody. And then I just try to do that. And sometimes it works out great, and sometimes it doesn't. When it doesn't, I don't feel badly about it. I just pivot and try something else and, you know, continue to wake up with the idea that I think maybe this is helping somebody and then, you know, try again.
It's it's really not hard to, you know it's not hard to do a good thing and the right thing at the same time. And Right. And Go ahead.
In an ever changing world where technology is always changing and treatments for things are always changing, I mean, there's so much more to to touch upon that you can just you can just keep going. There's always new technologies or new ways that you you know? You're talking about GLPs. You're talking about changes in in insulin pumps. You're talking about, you know, certain like, the just certain CGMs that you wouldn't expect them to do the things that they do.
Like, there's always ways to keep going. Yeah. Some of your new series on the podcast are just so interesting.
Thank you. Well
Because there's always more to touch upon.
But not just that too. And you've now you're a part of it too. But, like, you know, think about seriously about a 26 year old girl with type one who's listening to this today and going, oh god, and starts recognizing stuff about a guy she's with that you just said. And maybe maybe she'll stop for a second before she throws in with him, makes two kids, and spends the next nine years figuring out this wasn't the right thing to do. Like, seriously.
You know what mean? Like, that's a real value to somebody. And, you know, and everywhere in between. I I mean, you have no idea how many people have sent me private messages about their reptiles, which is just the thing that, like, I offhandedly talk about, like, once in a while. And there's a lot of people out there listening.
They're like, oh, I have one of those, or I do that, or I really like it. I find it com like, I get, like, really nice notes from them about that.
Mhmm. I
got one recently where somebody said they didn't realize they were keeping one of their pets incorrectly and learned it by listening to me and then fix it, the pet seems happier. I was like, Yeah. Didn't expect that one
when I started doing this. Interesting. Mhmm.
Why she talks back to the podcast1:08:17
Yeah. It's just it's just a great way to it's just a great way to talk to people. It it really is. I will
find myself I listen to your podcast. I did it a lot when I was driving, but now I do it when I'm on my walks in the morning. And I will find myself responding. Don't tell people that way. Yeah.
I think he can hear me.
Listen. I do that sometimes. I'm listening to people's podcast, and they hear somebody say something. I go, oh, what don't say that. And then it comes out.
It feels like you're in a movie. You're like, oh, no. Don't go in that door. No. But that's but that's a great fee that's a it's a really nice feeling to feel comfortable in a setting that you weren't gonna get invited into otherwise.
So, like, it's easy to say, like, find community. Where am I supposed to find that at exactly? You you know, like, again, there's only so many hours in the day. Listen. If if I'm if I started a podcast right now with four guys in their forties who all grew up with diabetes, and they got, you know, a bad start because the technology and the and the medicine wasn't there yet, and they had trouble pivoting to it.
And they all sat around and bitched about it and then let their feelings out while they were doing it. Your husband will listen to that. Your ex husband will listen to that, and it would help him. Like, I can't make a podcast for everybody. Like, do know mean?
But,
like Right.
The truth is is that that that would be him going, oh, here's a group of people who understand my situation. I don't have to actually stand up, raise my hand, and say I need help so I can privately look into it. And at the same time, get some feedback that resonates with me, start to make little decisions, and then before you know it, you pop out the other side, and you've changed. Like, it's just it really does work. But to keep it going for so long in an ecosystem that is fighting with me constantly like, you have no idea.
I I really don't wanna sound like I'm complaining. I'm sure I do. But to keep something going in a social media, like, digital world for twelve years is a sheer act of will. Like Yeah. That this this ecosystem is trying to get rid of me every day, and it's trying not to get rid of me.
It's trying to get rid of everybody. All it wants is for new people to start making content constantly, and it wants to throw away the old people. Mhmm. That's what it wants. Right?
It because it doesn't I think they would argue that they want democratization, but what I think is that they don't want anybody to be more powerful than the whole. So, like, it used to be YouTube, for example, would make some people really, really famous. But now it's not doing that the same way anymore. Mhmm. It's it's and and that feels on purpose to me.
Because I think when that happens, then the channel gets the ad money instead of the platform. That makes sense? Yeah. Yeah. So if I make a if you make a YouTube video and it gets, you know, a couple tens of thousands, couple 100,000, like, views, that's great.
It drag a 100,000 people into YouTube, and then YouTube serves those people ads. But when you get big enough that somebody offers you an ad on your YouTube channel, now suddenly YouTube's not getting that anymore. You're getting that. Mhmm. And so I don't think they want anybody to be bigger than the than the machine.
No. That's probably true. I never thought about that.
You wouldn't have to because you don't have a dumb job like mine. But and god bless you for not having to do it. Facebook you know, all I am to Facebook is I'm a carrot on a stick. Like, so I wanna create a Facebook group for all the reasons you discussed an hour ago because I know what
Mhmm.
A great thing it can be for people. And what they want is people to stay in Facebook so they can serve the mats. So anytime I try to share content with you that has a link in it, or now that AI is so good, anytime I try to share content with you that even intimates in its text that I'm asking you to leave Facebook, it it makes sure that nobody sees my post. So I can't say to you, hey. Today on the podcast, we had, I don't know, Katie Beth Hand on who, you know, is in the Elodon trial and
Right.
Free events. Right. Go click on this link to listen to more. If I say that, 84,000 people in my in my private group, incredible activity in there, like, as far as people online and in the group. If I make that post, it will not show it to even 500 of you.
Wow.
Yeah. And but if I rewrite it and it doesn't indicate that I'm asking you to leave, then it'll leave it up. And the and then what happens is people come to me, and they go, I don't understand. Why wouldn't you put a link in here so I can go listen
to this?
And I'm like, oh,
well Yeah.
You you know? And it just it goes like that. It it's just over and over and over. And
You see that on so many apps. Like, even TikTok will be like, oh, but follow me on the you know? And they have to give you a a another term for it because you can't say, you
know Yeah.
Instagram or you can't say you know?
And it doesn't work. I've tried I spent last year 2025 was last year, I spent $5,000 of my own money to open up another group on a different platform that doesn't control people, and getting people to it was completely impossible. So Facebook does have a a stranglehold on on the population. So it's okay. So it didn't work, and it was worth a shot.
It would have really helped you guys, but, like, it's just not how people think about it. So I just pivoted away from it. I like, okay. Well, then that didn't work. And, actually, it was my money, but I got a company to cover it.
So they paid me the money to do the thing, and then I paid the taxes on the money, and then I had to pay the thing. So it actually cost me money when it was all said and done. And but it still felt worthwhile to me because I thought it would be more valuable for you all, but it just didn't it didn't pan out. Like, people it's not what people wanted to do. So so right on.
Like, I I'm not fighting against what people wanna do, but I'm telling you, like, it it is a constant struggle. Even Apple Podcasts, like, they retune that that's where most of my listeners are at in Apple. Mhmm.
Right.
But they retune their algorithm all the time. Mhmm. So what they and they're doing the same thing is that they just don't want anybody to be too big. It's it's I don't understand the
Right. The cycle. Even things as simple as you would listen to one episode, and then it would automatically push you into the next one. Now it pushes you to a different podcast.
Yes. Yeah. That's by the way, if anyone from Apple is listening, fuck you. So, I mean I mean, really, like, difficult because I also pride myself in putting out a lot of good content. And so, like, it's I just the way I think of it is, you know, I've been I've said it before, but, like, I grew up listening to radio.
What she'd want another parent to know1:15:05
And, you know, Howard Stern didn't come on on Monday and then come back next Monday. He was on Monday to Friday, and you didn't get to listen to all of it. But it was always there, you knew it was there. Right?
Right.
But there was also nowhere else to go. If you wanted to listen to something like that, people talking, then that's you would go back and tune into that. I I can't even accomplish that now. So at some point, like, it it really is like, it it's a it's a it's a hump. Like, it really just is difficult.
But yet this is the best way to accomplish it still.
Sammy, it really is. And and the fact that you're still doing it after your daughter is older and in college and, you know, it's it's like you've done your job at home almost, you know, but you still have so many people that you're helping.
I like doing it too. Like, it it is nice. Like, I'm obviously very chatty. I don't know what would happen if I didn't get to talk at least once a day. Yeah.
I'm sure at some point, would just lose my mind, run around outside. But, no, I appreciate that. It it well, there's more to learn, and there's more to go. This just because I'm not as hands on with her every day doesn't mean that also over the last twelve years, I didn't learn from the countless 22, 23, 24, 25, 26 year old people that I spoke to that they still have trouble too. And that and that, by the way, if they don't handle that trouble, then it follows them into their thirties, and it follows them through their pregnancies.
And they one day end up being the divorced ex husband of a lovely woman who used to be a nerd or who's a nurse because who knows why? Because they have Mhmm. Weird attachments to whatever. They're not good with their they're not great with their their own health. It's causing them other problems.
Now those people are, like, you know, having heart catheterizations, but then telling their daughter who now suddenly has type one diabetes, it's okay. Don't worry about it. The pump will get it. Mhmm. Like, I'm trying to help break all those different cycles that we've uncovered over the years of doing this.
Like like I said to an advertiser recently, and they asked me how much longer I thought I was gonna do this because I am I shouldn't say me. The podcast is a big part of some people's advertising, like, ideas. Like right? Mhmm. And so they don't want me to just, like, you know, catch fire, flutter off, and go.
And I was like I said, look. I think I can do it for another decade, and I think that would be valuable for people through there. Like, into Arden maybe having her own children. Like, I think that's maybe when I'm I'm gonna run out of insight. And and I said, and I think that that'll be, like, the extent of, like, you know, being helpful for people.
I think I can do that. I said, but you guys gotta you know, everyone's gotta stick with me here because
Right.
It's you know, I I'm still young, and I have bills. And I'm not ready to retire yet, like, age wise. I'm also not ready to retire yet, like, financially. I can't just stop working. Like so if I can't do this for a living, then I don't do this.
And then I think you lose whatever whatever this ecosystem is that I've put together, it'll disappear. Like, I think it needs it needs to stay so that it can unearth other things and unearth other conversations and hopefully lead to other people's success. Or
I agree.
That's my goal. Nevertheless, if Facebook would just leave me alone for five minutes, I would be on if, like, literally I'm being serious. If just Facebook would calm down, then this podcast would be the biggest thing in the world because then 84,000 people would absolutely know when something was coming out, and they might go check it out. And then, you know, then you don't know what that would do for people with type one. Because if it got that big that it spread out that much, then just try to imagine try to imagine your situation specifically.
Right? And one day you get good information. Now look at the success your daughter's having her her health success.
Mhmm.
And there's two million people living with type one diabetes or whatever the the number is, like, in America. And and I'm only I'm reaching more of them than anyone else and still not reaching a big fraction of them. Right. Right? Just imagine that if every just forget me and my dumb talking and all that stuff.
Just imagine if everybody woke up tomorrow who had type one diabetes, made their way through the pro tip series, and then never came back to me ever again. And they learned to knock down high blood sugars and to pre bolus their meals and how fat impacted them and how to stick up for themselves at a doctor's office. Maybe that's all they took from it. Just imagine how much better everybody's situation would get if they just had that information. Exactly.
Yeah. So if you work at Facebook and you're listening and you have type one diabetes, maybe turn that dial the other way on me that I hear you guys have because I know it's there and you're controlling how much I'm allowed to talk to people. So may maybe just leave me alone for an hour and see if I can, you know, change the world in a more meaningful way. Anyway, now I'm complaining. Alright.
Jennifer Garner was with us again. Star of alias. Once married to Ben Affleck. We never said his name today, but, obviously, Ben Affleck, terrible person with type one diabetes who doesn't take care of his family. That was all facetious.
Your name is not Jennifer Garner. But it did occur to me while we were talking because we called you Jennifer Garner in the beginning as you were talking about your ex. People are probably like, oh, poor Ben Affleck has really taken it today. By the way, I like Ben Affleck a lot. I I Right.
I'm a fan is what I'm saying. Yeah. And you people should be ashamed for mocking him while he was dealing with alcoholism. Seriously. Stronk with the Internet.
Guy's trying to take his kid to school. Anyway alright. Anything else? Anything I missed?
No. No. I don't I don't think so.
I appreciate your time. Hold on for me one second.
Okay? Okay.
Today's show is sponsored by Tandem Diabetes Care, the Eversense three sixty five, and Touched by Type one, who you can learn more about on Facebook, Instagram, and at touchedbytype1.org. Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem MOBI system. I'd like to thank the Eversense three sixty five for sponsoring this episode of the Juice Box podcast. And remind you, if you want the only sensor that gets inserted once a year and not every fourteen days, you want the Eversense CGM.
Eversensecgm.com/juicebox. One year, one c g m. If you or a loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions.
You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the juice box podcast. The bold beginning series and all of the collections of the juice box podcast are available in your audio app and at juiceboxpodcast.com up in the menu. Thank you so much for listening. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple Podcasts, please do that now.
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© 2007–2026 Juicebox Podcast. All rights reserved.
#1959 Dr. Joanna Mitri from twiist
Dr. Joanna Mitri from twiist
Dr. Joanna Mitri is an endocrinologist and Sequel's chief medical officer. Scott brings her a list of questions from the audience about twiist — coverage, cost, sensors, tubeless, and what's next.
Jump to a moment
- She came to fix diabetes care, and stayed to build the tool. Dr. Mitri trained in endocrinology in Lebanon, where she describes care as fragmented and access difficult, and came to the United States intending to learn integrated care and go back. Instead she spent years overseeing Joslyn affiliates — going into clinics in the US and abroad to repair their diabetes care models.
- Her diagnosis of the real problem: we build the model and make people fit it. Every clinic she visited had a different obstacle — staffing, electronic records, whether they had a diabetes educator at all. Her conclusion was that excellent technology existed and simply wasn't being offered, because it was seen as too complex or didn't fit the workflow. Joining Sequel was, in her framing, a chance to build technology around people instead.
- The number they brought to ADA. She reports that real-world data on people using twiist in daily life — not in a study — showed almost seven out of ten meeting recommended glucose goals. Scott presses on whether that's people who were already doing well; her answer and the surrounding detail are in the episode. These are the company's own reported figures.
- Coverage runs through the pharmacy, not durable medical equipment. twiist is cleared for ages six and up. Her description of the path: see a provider, get a prescription, fill it at the pharmacy — which removes a common barrier. On cost, she says commercial insurance means $0 the first month and no more than $50 a month after, covering the kit, the cassettes and the infusion sets. Medicare depends on the specific Part D plan, and she recommends checking with Sequel directly rather than guessing.
- On tubeless, and on sensors that misbehave. Asked the audience's most common question — will there be a tubeless twiist — she doesn't commit, but says they hear it and want the system to meet people where they are. On unreliable sensors, she notes twiist works with two sensor options, and that because the algorithm re-decides every five minutes rather than learning over time, a bad reading doesn't set a lasting course. Nothing here is medical advice.
- twiist — The twiist AID system from Sequel, powered by Tidepool — targetable to a glucose level as low as 87.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- T1D Exchange registry — US residents 18+ with type 1 — take the survey and support research.
twiist™ is for T1D ages 6+. RX ONLY. US ONLY. Important Safety Info: twiist.com/safety.
The twiist™ Savings Program offers U.S. residents with commercial insurance a $0 Starter Kit and Refill Kits for $50 or less (may be higher with high-deductible plans). The maximum benefit is $200 per Refill Kit. Call 1-877-489-4478 or your insurer to verify coverage.
The Eversense 365® Continuous Glucose Monitoring (CGM) System is indicated for continually measuring glucose levels for up to one year in people (18 years and older) with diabetes. For important safety information, see bit.ly/eversensesafety.
Every word of the conversation
Cold open & sponsors0:07
Hello, friends, and welcome back to the juice box podcast. If you don't love today's episode, you can have your money back. You should not, in any way, shape, or form, take anything you hear on the juice box podcast. As medical advice, I'm talking about medical advice, regular advice, any kind of advice. This is a podcast.
Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. I cannot stress that enough. Spend a few minutes today making the world of type one diabetes a better place by completing the survey at t1dexchange.org/juicebox. They're looking for US residents 18 or older who have type one diabetes.
T1dexchange.org/juicebox. Links are in the show notes. This episode of the podcast is sponsored by the Twist AID system powered by Tidepool that features the Twist loop algorithm, which you can target to a glucose level as low as 87. Wanna learn more? Go to visit .twist.com/juicebox.
That's visit.twist.com/juicebox, and Twist has two i's. Understand? Twiist.com. Visit .twist.com/juicebox.
Hi, Scott. Thanks for having me today. Tell you a little bit about myself. I'm Joanne Amitri, an endocrinologist by training, and I'm the chief medical officer here at Sequel.
Oh, you guys make the twist pump.
We do.
I am excited to talk to you. I have a list of questions sent in by the audience, and I'm sure you have some things you wanna share too. Can can I just ask you a little bit about yourself before we jump into the questions?
Yeah. Of course.
From Lebanon to Joslyn to Sequel1:57
Tell me what happens to you in your early life that makes you want to be a physician, and then once you decide to be a physician, what makes you pick endocrinology?
Yeah. No. It's it's it's a good question. It's actually a long story, but I'll make it short. I really started out with a plan.
At that time, I think it was a clear plan. I and, you know, I was interested actually in food, to be honest, like how food shape, like, our health, how it leads to growth and aging. And that's what really led me to do diabetes and endocrinology in the first place. But where I grew up is in Lebanon. It's a country where, like, diabetes care was is very fragmented
Mhmm.
Scattered. And I'm sure you, Scott, and many people here would would would identify with something like that where, like, access sometimes is difficult. Things are not coordinated. So I came to The US because I wanted to know, like, how, like, integrated care works. So I thought I'd come here, and I'll go back, and I'll build everything in one place.
But that didn't happen. So instead, I actually ended up working here in The United States on care models for diabetes. What kept what I can tell you yeah. Go ahead.
I cut you off. I apologize. But what what kept you? Was it a was it a job that you loved? You meet a boy?
What what what made you not
want? What happened? Great. All of the above, but no. No.
What I say is that, so I it's funny because I really wanted to go back and build that center in Lebanon. Mhmm. But I was lucky because what I couldn't do in Lebanon, I was able to do it here in The US for many places. I was overseeing what we call the Joslyn affiliates, which means we go to centers in The US who needed to help fix their diabetes care model, and we would help them. We also did it internationally in different countries in the world.
Wow. So I felt like I couldn't accomplish my mission in Lebanon, but I I did it here for other people who needed it. And I can tell you that every everywhere I went, whether here it's in The United States or outside, I felt that, we tend to build model or technology and fit people inside and not the other way around. Mhmm. So when SQL, came up and the opportunity came up, I felt like this will be an opportunity for me just to to be part of a technology that actually work in people's life and not the other way around.
So this is how I ended up at Sequel.
It's interesting that you bring this up because I was just having a conversation with a friend of mine who is a CDCS and a a lifelong type type one. And we were talking about how the academic side of diabetes tends to say, oh, this will fix it, but they don't often, do a great job of wondering if that's what people need or finding a way to translate it to regular everyday life. Can you tell me, when you were doing that work, what are a couple of things that still stick out in your head now that you identified when you looked into clinics that needed to be, like, straightened up, fixed, I don't know, collected in a way that could be used over and over again and be valuable?
Why good technology never reaches people5:26
Yeah. This is really great. I mean, honestly, like, this is where I found most of the challenges. First of all, every that's the thing. Every clinic had a different problem.
Not all clinics are the same. It really depend on resources, how much people and staff they had, what electronic health record they used. Do they have diabetes educators? Not all of them had diabetes educators available to teach about new technology all the time. Mhmm.
So I felt like there's a lot of technology out there. There's a lot of new devices, new tools, amazing technology, and but it wasn't being used, because it was felt that it's either too complex, or there wasn't enough enough staff or models to incorporate it into their workflow and to offer it to people with diabetes. So at the end of the day, many people were actually left out. They were not even offered what's existing out there.
I I find that I think of it as the this, like, cycle that keeps everybody trapped. So is the is it's like a chicken or the egg. Right? Do you spend your time educating people so they can make better decisions, or do you put technology on them that will limit their need to make decisions? And then somebody eventually says, oh, well, if they don't know how to use the technology, that might be dangerous.
But they're also in a dangerous situation now. So it's almost like, you almost have to pick one and go with it. And what I found is that there are some people who are eager to be educated, to be able to make better decisions, and they're able to take that that in. But there's also some people where that's not a good fit for them, and that I don't think that means that they should be left out of a healthy lifestyle. So what did you land on?
If you could only if you magic wand people and it had to go over the whole society, you can only decide one thing, would you lean education, or would you lean technology that does it for them?
Yeah. First of all, it's it's it's it's really a great question. And you're talking specifically, Scott, about people with diabetes. Right? Do you educate them or you give them the tool?
Right.
I I think what what in my in my opinion, the ideal thing to do to give people with diabetes is to let them determine the goal they want and then give them the tool that lets them get where they want Mhmm. In my opinion. So I think, yes, you wanna educate them, but you wanna give in my the priority would be give them the tool that will help them get there. Let them decide what goal they want, and the technology will help them get there.
Yeah. I'm with you. I I have to say that if I take a pill that takes care of a thing, I don't care how the pill works. I just know it works. And, you know, as long as I have it, I'm okay.
Because I'll hear people make the argument, well, they need to know how to do it with a with a needle and, you know, and a meter. And I don't I don't disagree that that would be valuable, but some of this technology and I guess we should just jump in and talk about it. Some of this technology is so advanced and just continuing to to advance that I I just think it's sort of a shame not to give it to people. I I that that's my opinion. I wouldn't be I wouldn't be worried, oh, they can't figure it out.
I think they'll figure it out way sooner than they're gonna figure out that a meal with 40 grams of fat in it isn't gonna hit them the same way as a meal with 10 grams of fat in it. That's a that's a heavier lift for a lot of people. So can you start off by telling me what Sequel and Twist talked about at ADA? Like, what was your big, your your big reveal at ADA?
What Sequel brought to ADA8:54
We're a company. We're really focused on improving how, people living with diabetes, improve how we can improve their lives. So we have the Twist system, and, we launched it back in July of last year. And, it it was really great to be at ADA. It was a big moment for us, which happened at in June of this year.
And what I was really most excited about, I would say, is to bring what we were able to bring this year, which is really a big batch of real world data that we've looked at on people using Twist in their everyday lives. Mhmm. And not not really in a study, just like using it on a daily basis. And we shared that data with the diabetes community, with health care providers to to tell them how how really Twist has been performing in real life.
What what was exciting about that data? What did you what did what's your take what should people's takeaways be about using Twist?
Yeah. I think the headline, I would say, for me was that the data we show we shared showed that almost seven out of ten people using Twist were able to hit their recommended glucose goals.
Seven out of ten hitting their goals10:11
And are these people who previously struggled to meet that goal, or they were already doing well and discontinued to do well for them? Who who I guess everybody would benefit if if if the answer is both, but I'm just wondering because sometimes this data gets skewed a little bit. Right? Like, we gave, we we gave, lollipops to 10 people that don't eat lollipops. None of them ate them.
You know, that that kind of thing. Like, what what did you guys do? How did you put this together?
Yeah. And I love this question, and and the answer is quite simple. We actually didn't filter anything out. These are people who made their own decisions to go on Twist, and they come from different backgrounds, from different prior therapies. Some people were on AID systems, and some other people were even using the DIY, and others were coming from injections, multiple injections per day.
So we've had people coming from all those backgrounds, and this is the result compiled for all of them without, like, leaving every filtering or leaving every anybody out.
Filtering mean you didn't take any data that you didn't like and pull it
Gotcha. We just all of them looked at all of them.
Well, what's unique about the algorithm that's running on Twist? Why don't you tell people where you guys got it from and why you think it's it's a good choice?
Yeah. So we got it from the DIY community. I don't know. I can tell you a little bit about that, or I can jump into the algorithm uniqueness.
No. You know what I would say? I would say let's talk about that a little bit because I think that the DIY online, like, the people just listening, not people who are involved in it or really understand it, but I think it had a season. And I don't think it gets talked about as much as it should anymore, that there's a an awesome group of people who have been working on some of these algorithms, you know, privately in their own time for a long time. And Loop, I guess, is, you know, is one of them.
So tell tell me how Loop goes from being a thing that people online are making for themselves and sharing amongst each other, and how does it end up on a on a retail pump?
Yeah. I wanna say awesome is the correct word about this community who developed, this algorithm. So, yes, the twist loop algorithm is actually based on that, diabetes community driven type pull loop. And so I'll tell you a little bit more about it because the people who built it, these are the people who are we call them like, they built a movement called the we are not waiting community movement.
Sure.
And we really value everything they did and they brought to the community because those are people with diabetes who didn't want to wait based on the needs that they felt their their loved ones needed to have.
Why does it well, let me say this before I ask my question. I I just like to share this from my personal perspective. I think not only is the work that has been done over the years by all those people too numerous to mention important, I actually believe it's what drives the space. I think that most companies are out there trying with their algorithms because this thing got started. I think there's an argument to be made that if if the we are not waiting movement didn't happen, then a lot of people would've waited.
So I I I just I wanna applaud everybody. I think I think we're where we are now because of those people. Don't have you don't have to answer if you don't want to, but that that's my opinion.
Well, I have to say that it's because of this community and because at SQL, we share the same values, and we wanted to bring in an algorithm that was built by people who really like I said, rather than designing system and trying to fit people in Mhmm. We wanted to we wanted to include a system that was built by community for people and instead offering that so it can fit in their real lives.
Targeting as low as 8714:14
Yeah. There's a lot of smart people out there. So so okay. So you get this you know? So, I guess, so that people can understand a little bit, Tidepool did the lift, right, of getting looped through the FDA.
And then
We took it and embedded it on we did some we call it mathematical equivalence and embedded it on our pumps.
Could another company could I do that? Could I say, hey. I have an insulin pump. I wanna embed it on there. It's already been cleared.
Would it work that way?
Well, the code is in the is is is in the open source, so people people can access it, obviously. But I think to get it on a pump, there's a lot of work that needs to be happened to integrate it so it can be part of, like, a closed loop system.
Yeah. I I don't worry about I'm not starting a juice box pump. I just want I just want although it's not the worst idea in the world. But, no, I just wondered if it somebody else could pick it up and use it. So okay.
So you guys, you integrated together and start selling them last year. People are having good outcomes on them. Are we seeing, like, measurable a one c drops? Are we seeing more time in range? Do we see there are people reporting less distress, fewer lows?
What's the feedback so far?
We put it out there, like I said, in July, and people decided to go on those who decided to go on twist. We looked at the first batch of data, and we've seen that overall without taking anybody out, those who started high or low or those who had any if anybody had any issue, all of them actually, together achieved a time and range of 74.4. And like I mentioned, almost 70% of those users achieved their targets.
What's is that range fixed for everybody? The the the low high range that you're that you're saying time and range for?
That's so people can achieve their own. Like, they could say what they what they wanna be at. Mhmm. But the American Diabetes Association, there's a consensus on people need to achieve a certain amount of glucose between between the time and range that it's recommended, and that's the one that I'm referring to.
What is that range?
70 to one eighty.
70 to one eighty. Okay. And loop Lupin Twist allows you to target like, what's the lowest blood sugar you can target with it?
And that's one of the uniqueness about Twist. So in most others current existence systems before Twist, like, you could set it up as low as a 100, the lowest. And with Twist, you can you have a range, and you can set it up as low as 87. Mhmm. And you can go as high in one eighty.
So you really have this, vary or this large correction range.
Yeah. A target number that the that the device is shooting for when it's giving you insulin.
Exactly. So it goes as low as 87, and it goes at as high as one eighty. You can select any number in between to meet your own goals.
Mhmm. Was it what's it like doing your job at a company that is you know? I mean, you're sort of a software company. You're sort of a hardware company. Right?
Like, you're you've got a pump now. I have a a question here from people, about your site. When do non Clio sites options arrive? So, like, is there an auto insert coming? They have a lot of questions, I guess, about how the pump goes on to them.
Here's what makes Twist different. It measures the volume of insulin delivered with every dose using Soundwave technology. That gives it the ability to recognize a blockage quickly, allowing you to step in and deal with it before things potentially get out of range. It is also the only automated insulin delivery system that can be controlled from an Apple Watch. So you can discreetly check-in, enter carbs, or deliver insulin right from your wrist.
You can also set your glucose target anywhere from 87 to 180 milligrams per deciliter and adjust it for different times of day. So if mornings, workouts, school work, or bedtime all need a little different approach, Twist can flex with that. And here's a real life example. You enter carbs then something changes and you do not actually eat what you planned. With Twist, you can go back and correct or remove the carb entry and the system adjusts based on the new information because diabetes doesn't always follow the plan and your tech probably should not expect you to either.
If you'd like to learn more, go to visit.twist.com/juicebox. That's visit.twist.com/juicebox. Don't forget, Twist has two i's.
Yeah. First of all, I'll tell them we hear you, and we're we're always trying to improve on things we have. And you're correct. And we have taken some steps to enhance the experience. And now ICU Medical has modified some of that on the inserter adhesive pad to to help maintain the adhesions performance.
And we, on the other hand, we are working at SQL on our proprietary infusion set because we want to be able to give users more options.
K. Do you have a time frame for that? Do you have any idea when it might be available?
I I can't share a timeline, but I can tell you that, we got it cleared, and, we're just right now have to work through some logistics, some testing, and then putting it out there.
Oh, that's exciting. Well, so that's a a hardware question. People also said, why why did temp so temp bazel, did it get removed from your version of loop? It isn't available when loop mode is running, and they wanna know if you're gonna give it back or not.
How the algorithm actually behaves20:07
Yeah. So I can tell you a little bit on the temp bazel just to I do wanna clarify first that we do have temp Basel in two ways. The first way is that if if people wanna use manual mode, they could set a temporary Basel. But when in your in loop mode, which is when you're in a closed loop, the you the system does the adjustment for you. So they it does this what we it it is a temporary basal because it adjusts your basal every five minutes and put it in another state to make sure it it's accounting for the glucose and where you are, where you're going to be, and how much you ate how how your carbs is being absorbed.
So it sets up its own temporary basal to while you're looping. Mhmm. But I think what the community probably wants to hear is that we're there are more features coming up. And I think if there's more features like those, the DIY would call them, like, presets, there's more feature we're continuously evolving, to include, features that exist and people love in the DIY, and those are things we're listening to and try we will be bringing at some point.
I have a question that comes right from me. So I don't know how long ago my daughter started to use Loop, But, god, it feels like it was maybe six years ago, I'm guessing. And when I started, I feel like I started on a version similar to the one that you guys are using now, but then eventually moved to one that instead of trying to address higher blood sugars with, like, a basal increase, it started to do a bolus. They called it auto bolus back then. And I'm wondering how how does this system address higher blood sugars, and do you have an eye on on changing that, or do you like where it sits now?
Yeah. It's it's a good question. But, Scott, I'll I'll tell you. So if your glucose is high, you get insulin. You can get it whether you get it in a bolus or in a basal, insulin at the end is insulin.
Right? So some people gives it different type of names, on how it adjusts for the glucose. And in the current version of the twist, loop, algorithm, the adjustment for when your glucose is predicted to be high happens through what we call basal modulation, which means the basal was will go up so it can adjust for the, predicted high glucose taken into account, obviously, other factors as well.
Mhmm. And do you think yours will ever will you look at the auto bolus version? Do you see a reason to do it, or do you do you think that what you have is is is great and doesn't need to be adjusted? I guess I'm wondering about when you get the algorithm from, you know, the DIY community and it comes into the company, do you start thinking about how to make improvements to it in house, or do you think about going back out to DIY and because then don't you have to then put that back through the FDA if you did that again? Like, I I don't under like, it gets intricate and hard for me to understand right there.
Yeah. I can explain a little bit more. So first of all, we we do listen to people like you, who who express on what they need. So we're listening right now and trying to see if people wants those additional features. Be like I said, we know that there are features that people love and want, and they're feature that some people love but others may not want.
So what we do is that once we hear all the feedback, and this is what we're actually doing, is that we take that and work with Tidepool, to to kind of source those codes and upgrade it on the pump and work with the FDA to, update the next version of the algorithm.
I like that. That's a good answer. Thank you. Is Twist compatible with Dexcom right now?
It is not. But we know that for us, providing people with diabetes with choice is at the core is the core of what we do every day, and that includes CGM choice. So we don't have a public timeline on that, but our work is ongoing. But in the meantime, I'll say, Scott, that, our CGM road map is really actively expanding. We we are integrated with Eversense three sixty five, the Freestyle Libre three, and we are working to finalize the the Libre Duo integration as well.
Awesome. Thank you. How about for Android devices?
So, Android is this, I wanna say, is kind of, on the same page that, we we know that some people have different preferences on what they use. And, and if you're on Android and you're interested in Twist, I could say that you can't use it yet, but I don't I don't wanna brush pass past that. So, it's something our team is actively working on, and it is coming. I just don't have a date on it today.
Okay. That sounds more promising than a Dexcom answer, so that's good. Multiple profiles. People say multiple basal insulin to carb ratio, insulin sensitivity profiles for exercise stress, menstrual cycles, etcetera. They wanna know if those would be available.
So I guess set up a profile that's like, this one's when I'm active. This one's when I'm sedentary. This one's for when I'm sick, that kind of stuff.
Profiles, presets, and variability25:42
I think it's an important things to be able to have like, wanting to to have different profile if that's what works for people because they have variability. But but what I could say is that currently, Twist have tools right now in place to allow to flex for that variability. Mhmm. Because we have things like activity pre exercise preset. But for those who obviously likes to completely change profile for a certain period of time, those are things we're also working on based on feedback, some of the feedback we've heard.
Yeah.
Yeah. But but what I could say, maybe, Scott, just to add is that our algorithm, because it doesn't learn, so, it adapts, which means that if you're right now go through, let's say, exercise or hormonal changes
Yeah. To what's happening now. It's not
Exactly.
I'm jumping around a little bit here, but I'm enjoying the way we're doing this. Are you okay so far? Are you feeling good?
I'm feeling very good.
Awesome. Awesome. So there's a question here from the audience. I have to tell you, a lot of people ask me questions and I generally have answers, but this one I never quite know how to answer. How am I supposed to use, they wanna know, an automated system that relies on the data coming from my CGM when my CGM feels like it's never accurate or sometimes says I'm 400 when I'm 60 or says I'm 60 when I'm 300, like that kind of stuff.
“What if my sensor is never right?”27:14
And and all I can like, you know, when I when I'm asked the question, I say, look. All I know is that Arden has used Omnipod five. She's used Loop. She's used Trio. It's never been a problem.
And I don't but that's also my daughter also does not have a lot of issues with sensors. Right? So her sensors tend to work well, not get choppy, last the entire time. But I I never do know what to say to those people. Do you have you this is a thing you thought about or that you talk about internally?
So first of all, the if they have issues with one sensor, the good thing about our system is that it's compatible with two sensor Mhmm. Right now. And we're we're con like I said, we want to provide people with more choices. So if a sensor doesn't work for them to to select another sensor. But the other thing is that so there are some guidelines.
Right? If the sensor is completely off by a good amount, you're talking here over 50 or, like, really off, then, obviously, you you you're gonna the the the algorithm will make a decision, but to say how much insulin to give. But the uniqueness about Twist is that that decision will change in five minutes if that was if something was wrong and the sensor let's say, you change sensor or you fixed or things don't go in the right direction, the algorithm will reset again every five minutes and make the decision based on new information. Mhmm. Now if the sensor is off the whole time for like, you check and it's not really you're not able to there are sensor you can calibrate, sensor you cannot calibrate, then, you just basically, you can't you have to change the sensor.
Yeah. Okay. Let me ask you a a quick question about access and coverage. So people wanna know about how to get started. Is it covered by private insurance?
Coverage, prescriptions, and the pharmacy29:13
Does Medicare cover it? And then they actually, some of them specifically asked about certain health health care coverage. I'm not gonna ask you names, but I'm I do appreciate everybody sending the questions. And is there any plans for your indication to go under six years old?
Yeah. Right now, we are Twist is cleared for those age six and up. And in terms of access, right now, the path is very clear for us. If somebody wants to go on Twist, they'll speak to health care provider. They get a prescription.
It comes through the pharmacy. There's nothing that go through durable medical equipment, which sometimes may take longer and more things to navigate. So that removes one of the barrier. Now on cost wise, I think the the way it's designed that the first month, it's go if you have an insurance, the cost will be $0, but then it will not be more than $50 a month afterward for for refills. I'll say that when we launched or as we launched, we had a strong commercial coverage.
Now there may be specific plans you have called out maybe. I would say the most reliable way to get a real answer is to reach to your SQL team because, coverage can be different between one one and another, and I don't want to just make a guess here.
Sure. Sure. Of course. Oh, I appreciate that. So I'm I wanna make sure I understood what you said, though.
So if it's covered, it's nothing the first month and then no more than 50 moving forward. That's private insurance?
If you have a commercial insurance, the first month is $0, and then it would be no more than $50 per month, afterward.
Oh, wow. So what do you you're getting the device itself and then infusion sets. Is that right?
You would get the whole kit, the device, the infusion set, and, yes.
Okay. So the 50 a month would be for infusion sets mainly?
Well, the pump has two parts. It has the cassette, nonreusable part, and you have the reusable Okay. So you get in your package.
Yeah. I didn't mean to talk over you. The cassettes are disposable along with the infusion sets. That's the the supplies you're gonna need month to month. I got it.
You would be getting this on a monthly basis.
Zero the first month, fifty after31:37
That's a really fair price, actually. Is that a thing, like, that you guys set out to do? Is that was that part of the the idea when you got going? Like, let's do something that won't cost a bunch of money, or, I mean, is that just how it worked out?
This was really very important to us. It's one of the things that our CEO is very passionate about. Arlen Lodwin is our CEO, and and the first thing that he really told everybody and told us that he wanted to make sure that those system are accessible, and they are at a price that people can afford. Obviously, I know not everybody can afford, but I think we wanted to make sure that that we can work with payers to give it at at a at a rate that may work for many.
Yeah. How about I I did I miss did I not hear? But did you say, is it covered by Medicare?
So right now, it it depends. So we we the the way it works with Medicare, I think, depending on the specific plan that people may have.
Okay. Alright. So they should check with Medicare to see if it's covered?
Well, if they are on Medicare Part d and they have a specific coverage, that's what I meant. They may have coverage through the pharmacy.
I see. I see. Oh, through pharmacy. I'm sorry.
Correct.
I'm gonna ask you for a second a little bit about what you guys are looking into for type two, but I don't wanna I don't wanna make people wait any longer for what I think might have been the biggest question that I got asked when when I went to the community and asked. And here it is. Will Twist ever have a tubeless option?
Will there ever be a tubeless twiist?33:16
So it's very important for us. Like I said, this question and many others, when people we we we want to be able to meet people where they are. We want to listen to what, really matters for them. And, we know that tubeless is something people are asking about. Some people may think that they want tubeless because they want something maybe easy to use.
So we listen to all of that, and the idea for us is to make sure we we make Twist is continue to be able to be personalized to everybody and meet them where they are.
Is there anything I haven't asked you that that I should have stuff that would have led to information you want people to have about the device or the company? Did I leave anything out? I am gonna ask about the type two stuff, but I wanna know, like, did I leave anything out? Because in my listen. Here's how I'll put it.
I feel like I know a lot about loop. And not as much as some, but a a fair amount. And I know how fantastic it is. My daughter used it for years. And I would tell anybody if you wanted to use a DIY loop and you couldn't figure out how to do it, I would a million percent look into Twist.
I would also say this is probably a good time for me to say that you guys are on again, off again advertisers on the podcast. And I think at this at this juncture, we are actually in the middle of a a contract. So just so people know that. But I'm telling you, if if you wanna try Loop, definitely look at Twist, especially if you're afraid to build it yourself. But I wanna make sure that I didn't, like, skip anything or miss anything that you're sitting here thinking, oh, no.
They should really know about this part, and it didn't come out.
Yeah. Maybe if there's, like, one last thing I wanted to leave people with is that that the the belief that we we build around because I've heard few questions and that we believe that technology should adapt to the person, not the other way around. Mhmm. So we listen to feedback, and we're committed as ever to the community that we're serving today, the type one community. And I know you've had questions on others, and we're trying to make sure we're putting a lot of energy to making their their experience better, but also expanding access to others.
Now our Twist algorithm has what is unique about it is that you're you're able to really customize it according to to your target and to your needs, but also the the health care provider who's helping you have some levers to will have some levers to use if they wanna be more aggressive or less aggressive. They have those tools that we are we are teaching them about
Type 2, and who else this could serve36:03
Yeah.
To make sure they're comfortable adjusting their their settings for the patient sitting in front of them.
You're telling me that other systems some other systems work the way they work, and that's that. And you you can actually go into into Twist, into Loop, and make finer adjustments maybe to insulin sensitivity, carb ratios, things like that.
Yeah. So if people I mean, I'm a health care provider, and sometimes it's hard to to know which because there's things that you can't change. And with Loops, you have the option to change things if you want to be, more aggressive or if you want to account for a few things. And and the last thing I would say about our algorithm is that it has also some uniqueness that it does adjust for how your carbohydrate is predicted to be absorbed. You know that not all foods are absorbed in the same way.
Right? So some things may be absorbed quickly. Something may be absorbed more slowly. So the algorithm, when it makes the adjustment for insulin every five minutes, it takes into account the the meals that the patient or the person with diabetes would have entered.
Yeah. Is that still done by touching pictures of food, like lollipop and stuff like that, or did you guys make an adjustment to how that works on on this system?
It is done by selecting an emoji. Yeah. And for those who don't wanna select an emoji, it will select it will default, sorry, to the three to the three hours absorption Mhmm. Which is probably the majority of the meal.
It's a fantastic algorithm. It really is. It's just whoever thought it all up and did it, yeah, kudos to them. And and for you guys for bringing it out into the world, I mean, I've I've always said I'm very candid on the podcast. I've always said, I think the DIY community is fantastic, and the algorithms they build are amazing.
But, I mean, how many people are we really reaching with them? Like, it's people who are comfortable building an algorithm and uploading it onto their own phone, and it's just it's a leap for a lot of people. It's wonderful to bring it to the masses like this. It just it genuinely it's a it's a great thing for people living with diabetes. So notice I didn't say people with type one because you guys did a a trial for type two.
I'm guessing you're just starting to get into it, but what what led to wanting to do this investigational trial for type two, and and what are you guys thinking about over there?
Yeah. So we do want to improve we want to make technology accessible to everybody who would benefit from it. And right now, we are cleared for use in type one only, age six and older, but we want we're doing a lot of work to get us to get this technology cleared for other populations as well.
Yeah. And do you have a timeline for that? Are you something you're hoping for, or is it even too soon? Did you get data back that made you think, okay. That's good.
We'll keep going. This looks like a good idea.
Yeah. I can't share a timeline, but I can tell you that, yes, we completed our, trial, which is an important step, to get us, to get this tool or this technology to people with diabetes.
Mhmm.
And then we shared that data at the American Diabetes Association.
Okay. And, can where can people find it? It's on your website, I imagine.
So we did issue a press release, that tells, that tells about, the completion of the trial and, the data that was shared at the at the ADA.
That's cool. Did you include people, using a GLP in the trial?
We did include people coming from, different backgrounds and different therapies. GLP one, SGLT two, different age groups, different, race and ethnicities, different, insulin regimen coming in.
Joanna, can I share with you this is not a thing I need you to comment on? This is all completely from me. But I think the future of even for type ones is going to be a combination of an algorithm and a low level of GLP to kinda cut into insulin resistance. My daughter does it that way, and the outcomes are just spectacular. So I I think it's gonna be a a couple tools in the toolbox over the next few years.
And then my hope is that you and other people like you continue to work on these algorithms and get us to a point where maybe we don't have to announce meals. I think that would be a really big deal for people with type one diabetes. And then, you know, who knows from there? But in my mind, if you put me in charge, those are the things I'd be that I think I've seen be most valuable for people and that I'd be shooting for. So that's my 2¢.
GLPs, phenotypes, and a time capsule41:02
Of course,
I make a of all.
I make a podcast, you're a doctor. So, you know, you take it with a grain of salt.
No. I've I I wanna thank you for sharing your experience with your daughter. People have different needs. Right? So GLP one may help with, glucose after a certain after a certain meal.
It may help a little bit with the weight, help with insulin resistance. And, if that's what people need, to use with their AID system, then that's that's what they need to get to the goals that they want for themselves.
Yeah. Hey. Listen. I just said it here so that, like, years from now, I can use this as a time capsule and look back and say, yeah. I was right about that.
And and and it doesn't have to be and what I would add to it so we can both look at it back in time, the future Okay. Is that it doesn't have to be one or the other. Right? Sometimes it it it it has so you're right. Like, it may be that it's a combination of things to to get people where they wanna be.
Oh, yeah. No. I don't think it's for everybody. I mean, my just looking at people right now and having conversations, I think there are some type ones that have type one diabetes and have some insulin resistance almost as if if they didn't have type one, they might still have insulin resistance. And I'd also I'd also look out for the the appropriate bodies to start I think they're gonna say that a dual diagnosis is, like, a a legitimate thing in the in the future too.
I would I would imagine that's coming as well.
Anyway, like people working on different phenotypes. Right? Like, the diabetes, not all the same. Not all type one are the same. Yeah.
So you are correct in that regard.
Do you do you know doctor Hamdi?
Yeah. I worked very closely with him. I did work very closely with him, and him and I always get into that discussion. We're both very I would say, personally too, I'm passionate about those different phenotypes in diabetes because I believe that we can't only just think of them as type one or type two. People have different profile, different needs, and and I like different classification too.
I interviewed him last year. He's one of my favorite doctor interviews I've done in a while, and passion was the right the right word. I think he's one of the people who will move it all forward for people. Anyway, let me just say this. If any of this made you guys excited, I'd personally appreciate it if you went to twist.com/juicebox to learn more about it.
Twistwith2i's.com/juicebox. We'll probably put your ads on this episode so people can hear it too. But thank you very much for doing this. This was wonderful. It was great to meet you.
You and I hadn't met pre previous to this, and this was really lovely. It took us a while to get you on here. You canceled on me a bunch of times, I just wanna say.
You must be busy. Thanks so much for having me. I did enjoy. Obviously, I did enjoy. It was a great conversation.
Oh, I'm I'm glad you think so. Well, thanks again for coming. I appreciate it. To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox, or give them a call at 18774.
That's +1 (877) 489-4478 and tell them Scott sent you. TWIST requires a prescription and is indicated for people with type one diabetes six and older. Let's face it. Diabetes is tough, but it's easier when you have a community around you. So if you're looking for a great community around type one diabetes, check out the juice box podcast private Facebook group.
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What a great group of people. I don't like saying this usually because it dates the ad, but right now, there are 86,000 active members. 86,000 people in there who might have your experience, know what to say, or just be a great shoulder to lean on. Don't be too proud to find a community. It really does help, and it's completely free.
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Jenny is a CDCES, a registered dietitian, and a type one for over thirty five years. And in the bowl beginning series, Jenny and I are gonna answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode six ninety eight in your podcast player, or you can go to juiceboxpodcast.com and click on bold beginnings in the menu. Thank you so much for listening. I'll be back soon with another episode.
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#1958 Body Fullness
Body Fullness
Heather has had type 1 for twenty-nine years and was in the first human trials for Dexcom. Now she teaches mindfulness to people with diabetes — and has some language for what Scott has been doing all along.
Jump to a moment
- Twenty-nine years, starting before the internet. Heather was diagnosed in March 1997 at 27, teaching fifth grade, and refused to be admitted because she had dinner plans. She was sent home on a 70/30 mix. She's now in her thirtieth year with type 1 and describes a whole era of management that Scott — whose daughter was diagnosed in 2006 — never lived through.
- She was in the first human studies for Dexcom. Around 2000, through connections in San Diego, she got early access to continuous monitoring before it existed as a product. Her framing of what came before is worth hearing: testing twelve to fourteen times a day sounds obsessive now, but it was only ever a handful of snapshots, and you were still essentially clueless about what was actually happening.
- The advice that made her furious. An internist told her she was too stressed about it, that this was forever, and that she needed to chill out and test less. Scott's response is that it's among the worst things you can say — and he offers his own: being told Arden's high A1c was fine because bad outcomes take thirty years, when she was two years old.
- She gave Scott language for something he'd already built. When he describes his new self-guided program — built from the Pro Tip series and Small Sips, deliberately free, no upsell — Heather names it immediately as an applied mindfulness program. Her definition of mindfulness is a deep listening practice: awareness of thoughts, sensations, emotions. Her term for the diabetes version is body fullness — knowing what a low actually feels like rather than only what the data says.
- She teaches this, mostly for free. Heather is a former therapist who let her license lapse and now leads guided practice sessions through a type 1 diabetes sangha — roughly five free sessions a week, community gatherings, and an option to simply show up in silence alongside other people with diabetes. There's a multi-day retreat in Monroe, New York in October. Scott notes on air that he has no financial connection to any of it.
- Diabetes Sangha — Heather's community — free guided mindfulness practices for people with type 1, plus the October retreat in Monroe, New York.
- Diabetes Pro Tip series — Episodes 1000-1025 — the foundation Scott's self-guided program is built from.
- Small Sips series — The shorter companion episodes paired with the Pro Tips in the guided program.
- Mental wellness series with Erika Forsyth — The conversations Scott references — worry as a waste of imagination, and more.
Every word of the conversation
Cold open & sponsors0:03
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Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. I cannot stress that enough. Today, we've got a great podcast, and it's sponsored by great advertisers. US Med, the Eversense three sixty five, and Twist.
You know about Twist? It's an insulin pump. I'll tell you all about it a second. I'm having an on body vibe alert. This episode of the Juice Box podcast is sponsored by the Eversense three sixty five, the only one year wear CGM.
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Hi, Scott. I'm Heather Nielsen.
Heather? I'm Scott as we've gone over. How are you?
Mhmm. I'm doing well. I'm really well today. How are you?
Awesome. Well, I told you my wife tried to get me to cancel this recording so I could scratch her legs for her. So she said, can can
you Are you gonna be able to scratch her legs after our conversation?
I'm sure I will use the time that I was planning on eating my breakfast to do something like that.
Your day is that full.
My day is always like this. Also, are people around me who seem to think I work for them. So I mean, not that I don't wanna scratch my wife's like, you're don't misunderstand. But I've already been woken up this morning by my daughter who said, can you rub my ankles before I get in the shower? I was like, sure.
So I'm ringing her. And she's, like, 22. I'm rubbing her ankles. And I and she goes, oh, this feels so good. And I said, I wouldn't know.
No one's ever rubbed my ankles in the morning before. Oh my gosh.
Must be particularly good at rubbing the lower extremities of your loved ones.
I'm, I'm very, aggressive with it. I think the people like the aggressive.
Okay.
So, anyway, why are you here? What do you what do you do? Are you do you have diabetes? Do you like, tell me a little bit about yourself.
Sure. Yeah. I do. I have type one diabetes. Diagnosed 03/07/1997 when I was 27 years old.
Diagnosed at twenty-seven, in 19973:43
So I think seven is my unlucky number. I was teaching fifth grade at the time. Mhmm. And, you know, like like all of us, you know, I have my my story. I don't know if you wanna go into that diagnosis story at all.
So you were diagnosed twenty nine years ago?
That's right. I'm in my thirtieth year.
Look at you. I, by the way, only know that because you were diagnosed a year after I was married, and my thirtieth anniversary is coming up in a couple of days.
Alright. Good job.
And I just said to my wife, how is it possible that yeah. Good job. Actually, that'd be nice. I think more people should say that to me. Probably her probably her more than me.
But, I I just got done telling her. I was like, I had this whole thing planned, and now she's recuperating from something, and we can't do it. And I'm I'm now well, listen. That's all. But now I'm left with, like, I don't have anything to give her.
Aw. Well figure something out.
Thirty years, can you just celebrate it when she's recovered?
Yeah. We'll figure it out. It's not I don't think the date's Yeah. As big of a deal. I might just clean the bedroom for her.
I think she'd find out. She might just be like, oh, this is awesome. Thank you. So wait. So you're diagnosed twenty nine years ago.
That Yeah. That's what? Yeah. Nice. You would you start with, like, Humalog and or were you regular No.
Seventy-thirty, and the old days5:02
It wasn't even then. So it was so I was 27 years old. Right? And, you know, pretty pretty healthy. So and this was really pre Internet.
So I remember having, you know, all the symptoms, blah blah blah, super significant symptoms, but just chalked it off to stress. Finally, went to the doctor, when somebody at work told me that I looked like and I really needed to, you know, get it checked out. So, diagnosed and did not I refused to go into the hospital because I had dinner plans that night, and so they sent me home with, what was the combination? See, I don't even remember. It was, like, $70.30, whatever that was.
Okay. Alright. So you were you were doing, like like, the mixed you were mixing it or no? There's so many so by the way, there's there's a lot of interesting stuff here. A, that's never a world I was involved in.
And b, I've heard people talk about it so colloquially. Right? Like, people call it so many different things. Like, oh, I
was Oh my gosh.
I would I'd use regular in Miles hour. I was using, I don't know, pig and cow. I was doing this, like,
It seems like the old days. It was the old days.
Somebody else some people talk about it as, like, cloudy and reg like, they there's all kinds of different and I was not like, so I don't really know. I just, let people talk. But I think what's more interesting is that you don't remember.
Yeah. I don't remember. Unless you're saying all these things, I'm like, oh my god. Yeah. M p maybe it was m p h, the cloudy, the regular.
Oh my god. Yeah. Yeah. So I don't really remember. I mean, it's it's hard to track on or, you know, there was it was it's not necessary.
You know? I mean, I'm I'm 56, so my brain's full of stuff so I don't really need to hold onto that in there anywhere, but it was it was something. And then I was, you know, misdiagnosed as type two even though my A1C was 19.5 and I had all the classic symptoms and I'm white and, you know, all the stuff. So and no nothing in my family. So I was really fortunate in that I was school where I was a teacher, the one of the women who was I don't even remember what she did there, but her she was married to Bob Henry who at the time was, I don't know, with this amazing endocrinologist, like head of something at the ADA, and she talked to Bob about me and she's like, I think there's something wrong with Heather's diagnosis and can you help her?
And he said he popped off and said, yeah, she needs to get an islet cell antibody test and a GAD antibody test. And I asked my doctor to do those and then sure enough it was accurately diagnosed because I was put on Resulin, which was taken off the market later, but at the time, it was the hottest new pill for type two diabetes. So, yeah, it was a like a lot of people, fewer now than, you know, back back in the days.
Oh, I don't I don't know about that, Heather. I feel like I hear somebody say they were misdiagnosed every five minutes. I mean Do
you really?
Yeah. Maybe it's just the world I live in, but Yeah. People are constantly telling me I was misdiagnosed as a type two. And sometimes and maybe not just sometimes, but often, they're LADA. So their their progression's so slow that they they can live sometimes for years believing they're type two.
Yeah. It's really something.
You know? It's really it's really, really sad. So, yeah, I mean, I've definitely because of what I've learned and now I do work in the medical field, have for quite a while, but, you know, we we've we've really been, helpful for people to get an accurate and early diagnosis because I have a very low threshold for, you know, that that thing. But, yeah. Anyway, I was I honey honeymooned for, pretty much close to a year.
Diabetes, as you know, comes with a lot of things to remember. So it's nice when someone takes something off of your plate. US Med has done that for us. When it's time for Arden supplies to be refreshed, we get an email. Email just rolls up in my inbox.
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So I did did the shots for a while, whatever they were, cloudy and clear and whatever. And then, and then I was able to, very intensely a theme I've noticed, in your podcast is that we're all anxious, like you said. Yeah. And so through a lot of lifestyle and anxiety driven management, you know, super low carb eating before that was really talked about, you know, just exercising obsessively and just really trying to avoid the inevitable. And and then, yeah, after almost a year, it was it was quite clear that, it was all my efforts were not working.
And so, yeah, never forget that first shot that was like, okay. This is now the rest of my life.
Yeah. Well, was that was that I don't know if you can take yourself back that far, but was that relieving to have an actual honest answer, or did you just feel the pressure of the injections and the new diagnosis?
Great question. I mean, I think I've I think it was both. I remember being, honestly, being the most, surprised that when I asked the endocrinologist, like, what I never really asked, like, why me? It's just not really my personality. But I I was like, well, why why this?
Like, why did physiologically, why did this happen? And he said to me, we don't know and it doesn't matter. You just need to learn to live with it. And I thought that was incredibly unsatisfying. But, you know and I was like, well, I was very skeptical too.
Was like, come on. I mean, we can, like, go to the moon and transplant hearts and stuff. Like, why can't you figure this out? But, I mean, I think we are figuring that out a little bit more clearly now.
Well, now that you understand better the action around it, does it make you feel any differently? Like, was he right?
I like to I mean, I think a lot of people like to know. You know, they they like to understand it. Would I have done anything differently, you know, going back? I mean, no. Of course not.
But it yeah. I like to I like to kinda know.
Well, well, no. Listen. I first of all, I'm with you. And I also just had this conversation yesterday with somebody else about, like, you know, they asked their doctor something. Their doctor was, like, beyond dismissive.
Just like, well, that's not no. I don't know why you're worried about that. Shouldn't be worried about that. And and just like that and then walked away from her. And and the same thing for you.
Like, you listen. I think we're gonna find as we're talking, Heather, that you're a you're probably like a first class hippie. I'm I'm I'm assuming we're gonna pick through and learn. And and you think that that's because you told me about meditation. And I'm gonna tell you it's because when I asked you something earlier, you thanked me for it.
And it's it was, like, a very therapy or enlightened way to answer me.
And How do you define hippie then?
What's hippie? We'll find out. I I'm not sure. I don't have a definition for it. I just feel like we're gonna learn that, like, you know, you you're outside without your shoes on sometimes.
I feel like that's what we're gonna learn.
Oh, as much as possible, Scott. So
but, like, I forget what it was even. I don't even know if we were recording. Like, oh oh, it wasn't. We weren't recording. I said before we get started, can I just ask you a couple?
I can I fill you in with some stuff? Like, you know, and you wrote and you said, I appreciate that or thank you for that. Or it was something about the way you said it that I thought this lady's been to therapy, and and she and she's in she sees the value in us communicating. And that that's really what I got out of it. And then when you said, hey.
The doctor said this to me, and it was unsatisfying. I thought, yes. Because that did not hit the part of her that wants to be communicating. Am I right about any of this?
You're you I've noticed this in listening to your other podcast. You're incredibly insightful. Yes. Wow. And not only have I been to therapy, but I have been a therapist.
Oh, no. I could tell. You have language around it and everything. Yay. I
have so much language. I But I'm not here with that. I'm not here in that role at all, and I actually let my license lapse.
I don't do that anymore.
That's okay. No. I could tell I could tell at some point that was part of your life. So Yeah. Okay.
So you you start off as a type one about a year into it. I mean, it's been twenty eight years now. Yeah. But you're an adult at that point. Are you married?
Are you single? Are you in grad school? Like, I mean, you're teaching, but you you don't teach anymore. Right? So it sounds like you've shifted a lot over the years.
Shifted a lot. So I was in a difficult relationship which ended after the diabetes diagnosis because hippie that I am, I was like, oh, yeah. This was this was stress induced. They don't have another answer, so I gotta get out of this relationship and change my life.
So You blamed the you blamed the boy? You're like, I knew I knew you were bad for me.
Definitely not his fault. He was
a good human. He was
a good human. We were a bad we were a bad match.
So yeah. And then I do you I'm sure you're familiar with the group in San Diego, TCOID, Taking Control of Your Diabetes.
Yeah. More of that. Yep.
Yeah. Yeah. So they were, you know, they were a huge part of my, I would say, if this doesn't sound like the wrong word, like, my my success in in, engaging with my own diabetes in a pretty skillful way from early on, you know, because Steve Edelman's message was don't let your diabetes stop you from doing anything. And, he was a great example of that is still, you know, a great example of that. Thirty years later, TCID is still rocking and rolling.
And, and then I also met Bill Polonsky and had therapy from Bill Polonsky for my diabetes burnout pretty early in. And so, you know, the combination of those two and then my amazing CDE that I had, whatever they're called now, but at the time they were CDs, the nurse who, like you, like, in three minutes kinda had had me, pretty well assessed, and she gave me examples of people that she had worked with who were living really well, like, you know, a a triathlete who did so and so with type one and, like, a newscaster. Not that I was a newscaster, but I I had done triathlons. Anyways, like, she she nailed me and she gave me these really hopeful examples. So I think, you know, the trio of them really made up for the other subpar medical care that I received and and helped me to really believe that this was not a horrible thing, you know, that I could have maybe even a better life, you know.
And I think it also snapped me too, like it like it does for a lot of people, like, oh, oh, there's this mortality thing. Mhmm.
Gay, you feel the finite, nature of being alive and
Yeah. Which, I mean, both 27 year olds are not really feeling that. You know? Or, I mean, I don't know. Maybe maybe they're I was I wasn't having those conversation.
I wasn't as much of a hippie back then, Scott.
Yeah. Well, if you were teaching if you
were teaching fifth grade, you were probably just trying to stay alive, I would imagine.
I was. Oh my god. I I did love that job, though.
So, anyway, I moved to Budapest, Hungary because Steve Edelman said don't let your diabetes stop you from doing anything, and I'd always wanted to live, in Europe and or abroad somewhere abroad somewhere. And I wanted to do it in high school, but, you know, didn't really wanna leave my friends. And then we do it in college, and then my dad was like, no. I'm not gonna pay for that. And I was like, okay.
So, you know, blah blah blah. So
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So I'm 27, 28 now, have diabetes, and I'm like, I'm gonna I'm gonna do it. And so I went to a a teaching abroad fair, teach overseas fair, and, you know, applied to one of the fair, interviewed. And then the best the best job package was in a country that I'd barely ever heard of. And so I was like, alright. We're going.
Where where did you go?
Budapest, Hungary.
Oh my god. Well, do you how how is it to land somewhere with the need for medication and be I I would imagine, you know, not a native speaker and and everything else?
A year abroad, and coming home confident21:03
Definitely not. Very difficult.
Did you pick any up while you were there?
Yes. I speak a tiny bit of Hungarian. I studied I studied weekly. Yeah.
Well, that's amazing. But but are you not fearful of, like, what how do I get my insulin? How do I get my supplies? What happens if I have a problem?
I asked a lot of questions before I went over there. You know, like, how does the does the medical system work, you know, the pharmacies, you know, all of that. So I think honestly, I've I mean, I haven't really thought about that. Nobody's asking that question. Now I would honestly be probably much more fearful, but there's maybe the youth, the naivete, the newness into diabetes, the kind of like confidence like, I got this.
You know, Steve Edelman says don't let us stop you from doing anything, you know. I think so. And I think at the time there was a group that I had connected with, again, of pre maybe we had emailed then. I don't remember. This was 1998 that I moved?
1999? Don't really remember. Anyhow, I I felt confident enough that I would be able to I mean, like, people have diabetes everywhere in the world. People in Hungary have diabetes, so, you know, they have doctors, they know how to do it. But it was actually I was signed a two year contract and I did only last one year because it was a lot harder.
I mean, San Diego, California medical care, lifestyle, weather, you know, access to exercise, fresh vegetables, all that. It was I had no idea how, what it was gonna be like in Budapest, and it was really hard.
Oh, it's difficult.
I remember, you know, I did go see an endocrinologist, and it was in hospital where you go to the endocrinologist and made me really grateful for American. We have a lot of problems with our health care system, but at least, you know, you don't have broken windows and people smoking in the hallways in our hospitals. And I went there and she told me I had to, like, take all my clothes off, and I'm like, I'm here for a diabetes visit. Like, what do
you want us to take my clothes off thing? Are we gonna talk about my blood sugars? And I had to lay on a table, and they did an EKG on me. And, she told me
that I needed to lose 10 pounds.
Oh, what a lovely moment.
It was I was like, this is so weird.
Did you say, hey. Listen. Bear naked flat on a metal table is not my best angle. Like, I think you're just not assessing me correctly. Can I stand up and maybe bend a knee?
I think if I could just shift my weight onto my hip, you would feel differently about this.
Let me show you my best features. Oh my gosh. So it was it was different. You know? It was definitely different.
And, you know,
this was before, of course, CGMs and, you know, all the stuff. So I was I was able to get this test strips. And but I look back, and I'm like, wow. That was kinda crazy that I did that. But, I mean, people do much, much crazier and braver things with type one.
So Yeah. But I Yeah.
So I bet you no matter how it ended up or the experiences you had, it probably left you feeling more confident when it was over.
So much more confident.
Yeah. I would think so. And so you so you scampered right out of there. You're like,
like I did.
I'm going home.
Travel a lot when I was there, and that was ultimately my goal, which sounds whatever. Like, I I wanted to, yeah, make a living, but when you're on a teacher salary and you're single, you know, I couldn't travel couldn't really travel Europe. So I taught, and then I just traveled on the weekends and the school breaks. So I got to see a lot and had an amazing yeah. It was amazing enriching year.
Life changing.
Testing fourteen times a day25:09
Hey. During those first year let's say the first, I don't know, ten years of your of your type one because I think that's an interesting time, '97 to 2007. What what are your outcomes like? Like, are you measuring just a one c's? Are you, like, are you testing with any frequency?
Like, how does like, how do you manage day to day through that time?
Yeah. Definitely testing very frequently. So, you know, I came back to San Diego, got you know, had a different job and got established with a an internist. And, you know, he told me with his wisdom because I was testing probably, like, 12 to 14 times a day Mhmm. Which, you know, of course, now we know when we have, like, instant constant monitoring.
That's nothing. That's nothing.
No. I know. Yeah.
Nothing. It it's just a bunch of little snapshots. You're clueless of what's really going on. But it was you know, what he said to me, wisely, but I didn't accept it very well, was that he goes, you know, Heather, you're like, you're you're really too stressed out about this, and you gotta chill out. This is, like, forever.
“You need to chill out”26:15
You know, you don't you really don't need to be testing that much and just, like, chill out a little bit. I was furious.
Oh, I think that's the worst advice, by the way. I I when my daughter was diagnosed 2,006, so no, you know, no meters. I mean, just a meter. Excuse me. No CGM.
Right? Like, we had the nobody even ever offered us a pen. Like, it was always just
like Oh, wow.
Yeah. No. I literally, no one ever said, would you like an insulin pen? And so I would test her 12 I mean, your numbers right there are twelve, fourteen times a day. It was like when you get up in the morning before you eat, an hour after you eat, like, you know, after corrections, like, that kind of thing when she didn't look right, etcetera.
Yeah. Of course.
And yeah. But to your point, that's barely enough information. And then some and then someone says to you, hey. Why you, like, why you trying so hard? Like, you you don't make yourself crazy.
And I I always imagine, like, why not, like, finish that sentence? What does that mean? Like, stop testing and then just let randomness take its course on my body and my health? Like, what a weird thing to say to somebody. It's like So
especially when it's your kids, Scott. I mean, I just so I've gotta be a million times more crazy making than when it's yourself.
One of the most disturbing things anyone ever said to me when I questioned Arden's a one c back when it was like eight. And I said, you know, is this not problematic? And they said, well, no. Like, diabetes like, really, like, bad diabetes outcomes don't happen for, like, thirty years. And I was like, but she's two.
And, like yeah. I'm like I'm like, are you sitting here trying to comfort me by telling my my daughter's gonna have complications when she's 32? So don't but don't worry about it. And I was like, what do what an Yeah. I don't know.
Like, tone deaf thing to say or Yeah. You know, way to make me feel like you don't understand the thing you're here telling me about. You it's very interesting. So, anyway, I'm sorry.
Yes. Yeah. Yeah. No. No.
Sorry. I was really appreciate that because it's very oh, there I go again. It's my hippie language.
Record I record with a therapist who has had type one for, like, well over thirty years, and I think you and her would love each
other. I'm sure we would.
She's out there, by the way. Are you still in California?
No. No. I'm in Oregon.
Oh, okay. Oh, that's right. You're up north. Okay. Sorry.
Yeah. Anyway, I I don't know. I cut you off. I have no idea where you are in your story now.
I
think you were asking me what it was like between Yeah. 1997, 2006. Yeah. So yeah. So the checking checking a lot.
The first human trials for Dexcom28:58
And then because, again, because I had been living in San I I went back to San Diego, I, and I knew the people at TCOID. I was able to get in on, you know, some early uses of the technology, and I was in the first human studies for the DexCom. And that was, I don't know, probably 2000 maybe. And it was have you ever talked to anybody about that? Like, with the what it
started out like? Early studies were like, no. I'd be thrilled to hear about it. Yeah. What was it like?
It was a surgical procedure where so I have a scar still about two inches in my lower abdomen, and they inserted about
a
I think it was probably like a AA battery size device into that extra fat that the Hungarian doctor told me I had. And
so luckily, I had that to put it into.
Good thing you didn't lose that 10 pounds.
I know. So, it came in handy. So it was just hanging out there, and this was when because it was so new. Right? And the idea was initially, like, can can people can patients handle all of this information?
That was, I remember, one of the questions. Because I got interviewed, you know, quite a few times through the because this is early development. So through the process, lots of conversations about what this would be like. So I mean, and this was brand new. It had only been used in dogs.
So there were, like, 20 of us in doing these human trials. So I had to go in weekly to UCSD, and then they would upload, download, whatever, transfer the data from this device in my tummy. And then the well, I guess it would go from that device to I was carrying something around, some big clunky, like, Sony Walkman size kind of thing Mhmm. I think. And then it would they would that's where the data was held, and then they would transfer it, every Friday.
And then, you know, they would look at it and see what was going on. And then remember I went on vacation with some friends, to Puerto Vallarta, and I was wearing a black bathing suit on the beach. And I'm this is what I'm I've kinda made this story out because I came back from there, and they're like, oh my gosh. Your sensor died. We think maybe maybe it got, like, fried when you're on
your vacation or something. So,
you know, it was so expressive.
Then, okay. Then I had to
go have it, you know, removed and then that was I was done with that part of the study. But but, you know, I think the, you know, kind of to your the point one of the points of your question, I'm guessing, is, like, just to to for all of us to reflect on the amazing advances in the technology both in the insulin types, you know, because I I was before all these amazing long acting, you know, basils. Right? And there's people, you know, obviously who've had it fifty years, sixty years who can have the real the real interesting historic stories. But but just that one shift, that development of this continuous glucose monitoring has been such a game changer.
Oh, yeah.
And, you know, like they were concerned about is this going to be too much information for people, you know, the it can it can be a lot. Right? I mean, we we can we, that's where I think enter enter the mindfulness stuff. So it was around that same time or a little bit later that it's 2000 let's see. I was pregnant with Grace.
So 2002. Yeah. So it's 2002, and I've I had been told, you know, you're basically, you're too stressed out about this. You gotta chill out. And and I was working at that time.
I'd moved into into health care by this point because I oh gosh. I don't wanna go into too many rabbit holes. Lots of stories to tell. But, I was working for the Whittier Institute for Diabetes in a project called or a division called Project Dulce. And so I was doing peer diabetes education because, you know, my first career had been as a teacher, and then my graduate degree was in clinical psychology.
So I'm like, blend these things together, right, and help people. And I live with type one, so it seemed like I was made for that job. Right? Like so doing this job, stressed out, and knowing that there had to be a better way. And I saw this flyer in the hallway at the Scripps Hospital.
Says, like, MBSR, mindfulness based stress management. I was like, I don't know what that mindfulness based
stuff is, but I sure need stress management.
And so I signed up for the class, and it was the most impactful eight weeks and $300, you know, of my life to that point at that point. And I thought pretty quickly into it, everybody with diabetes needs this. Everybody needs this.
Are you an anxious person by trade, like, prior to diabetes?
Yes. I'm I was gonna say yes and no, but, I mean, if there's yes in there, then it's yes.
What so so so even before type one, you would have described yourself as however people talked about it back then?
Yeah. We didn't really talk about it back then.
No. Type a type a, uptight, that stuff, those words?
I I don't think anybody would have described me as type a or uptight. I think I'm a pretty like, I'm a peacemaker kind of I wasn't yeah. I got good grades in high school and all that stuff. Not so high performing in college, kind of a little bit more trying to figure stuff out. Yeah.
I I'm not as type I'm I'm in on the spectrum. How's that?
Put put it in find words for it though. Like, what how did you like, how would you describe yourself if not anxious? I
really cared about doing well.
You were a worrier?
I wouldn't have described myself as a worrier either. I think I just
Perfectionist?
Again, on the spectrum.
Oh, it's interesting. You yeah. You you don't have so do you not wanna put a word to it, or do you not do you really feel like there's not a word to put to how you are?
I feel like all of those words bring to mind something that I'm not quite. But, yeah, I'm
not quite. I just, for the first time, have I, for the first time, know how people feel when they're talking to me.
How's that? What do you mean?
Because, like, I'll I'll I'll I'll I'll experience something emotional and my eyes will, like, well up, and my wife will go, you're crying. And I go, I'm not crying. I'm just welling up. And she'll say, well, no. That's crying.
Finding mindfulness36:09
And I go, I don't I'm not crying. I've cried before. This isn't crying. And then then fifteen minutes later, she looks like she wants to murder me then jump off a roof. And I'm like, and I think I'm starting to have that feeling asking you about your anxiety.
You wanna jump off the roof. I'm sorry. Let's just
say a word, Heather. Which is it?
Well, I'll tell you okay. Late later, much later in this story, I this is this is definitely okay. I remember a moment when I was like, wow, I actually have been really anxious. It was when I was discovering functional medicine and, went to this chiropractor and she gave me this, like, powder, this magic powder that she called Peaceful Warrior. And it's basically, magnesium that crosses the blood brain barrier.
And she's like, just take this. And I was like, I loved her and was obsessed with her, and I was like, I will do whatever you tell me to do. I took it, this little drink, you know, for two weeks, and I woke up one day and I was like, woah.
Just felt relaxed?
I was like, where is that constant vibration I've been living with for so long I didn't know I had it. So I would say the I had become so accustomed to, like, a you know, I think anxiety is is really it is really complicated. Right? Because there are anxious thoughts, there are anxious sensations. Right?
And then they're, like, anxious feelings. And you so, I mean, yeah, it kind of sometimes it's all happening at once. I've and maybe maybe what's happening, Scott, I've really never had this kind of conversation, so thank you. It's fascinating to be, like, hearing myself talk out loud. Like, the it's like I don't identify as a diabetic.
I'm a, you know, I'm a person who lives with, among many other things, right, type one diabetes. So I don't want to be called anxious because like everyone, I experience anxiety and sometimes it's normal and healthy, which we should be worried about things, and sometimes it it borders into, you know, unskillful and unhelpful. Like, I love your quote. I've I've already shared it with a couple of clients here, like, that worry is a waste of imagination. I think that's really amazing.
So, yeah, I think I really am obviously resisting, you know, a label in that way.
Oh, no. You and I first of all, listen. If you and I got together, we'd murder each other in five seconds. I you we would you're a pain in the ass just like I am. I could tell just talking to you.
Because I have said, like like, well, somebody I was talking to somebody the other day and they're like, well, you know, like, you're an influencer. I'm like, I am not an influencer. Don't call
me that. Mhmm.
And and they're like, why? It's there's nothing wrong with that. I'm like, I don't know. I don't that I don't don't don't put me in a box. Like, I don't know what that feeling is.
It's like, don't I don't wanna be identified. I don't wanna be put in a box. It feels limiting. Yes. No.
No. I'm hearing it while you're talking. Trust me.
You and
I you and I might be the same person. And so just all of that. Even when I was in middle school, my guidance counselor said, Scott, you should be a lawyer. And I said, but then I'd be a lawyer every day. And and now I hear how you, like, have skipped through different like, you've done different work throughout your life.
I've resisted having an actual adult job most of my life.
And and so
yeah. So, like, I was a stay at home dad for a long time.
Yeah. Very cool. Your kids are lucky. So lucky.
They don't know that, but one day they'll figure it out. And then I pivoted to this. And there's there are times, like, if if you sat here and tried to have, like, a deep conversation with me and said, Scott, the podcast is over, and on Monday morning, you're gonna go to an office, I'd start to cry. Just
I feel like,
no. No. No. No. No.
I'm not built I'm not built for this.
Yeah. The office is a box.
But but even even just the idea that, like, I would do a thing over and over and over again. Yes. Like, that's the part that, like, I don't It's
soul crushing.
And I don't wanna sound like listen. My my mom and dad grew like, I grew up my parents went to the same job every day for their whole life. And, like, I'm grateful for it. And I know there are a lot of people listening who are like, oh, that's nice, Scott. I don't have a podcast.
I'm sitting in my office right now. And Mhmm. And and I'm sure they would love to not be doing that maybe. I mean, some people might love it. I have no idea.
I just know that when I talk about it and I start to go on like this, I think, oh, I sound just like Heather. And when you're talking, I think, gee, you and I have a lot in common. So
Well, I'm glad that you can identify that.
Well well, listen. You might be at the end of this, you might you might be insulted by it. Who who knows? But but also
I'm prepared to be insulted today.
We're also the same age.
Oh, really?
Yeah. So we grew up, like, through the same time and you know what I mean? Like, there's there's gotta be something to it. Where where were you born in '70?
November '69. Yeah. How about you?
I'm '71. So, like, so we're I mean, we're about the same age. Right? Yeah. And and I grew up through a time where, like, somebody told me, like, I was gonna go to a thing and do a thing, and that's what I was going to do.
I had no expectation about being happy or fulfilled. I was just gonna go do do that job. And I my whole life thought, I can't. I don't wanna do that. But then that's what happened to me.
Right? Right? Like, that was my situation. That's how I got started. And then it's only through I I feel like I've said this on here before, but, like, it's only because my wife who was better raised, better educated, was willing to look past who I appeared to be to find out who I was.
Does that make sense?
Totally. Yeah.
Like, Wow.
She pulled
me out of a world by, like, offering me space in hers, I guess. Yeah. And then, you know
She's a keeper.
You know? Thirty years. I I'm sick. Yeah.
But That's amazing. Somebody I definitely haven't done that.
Well, somebody asked me recently, like, what's the secret to being married for thirty years? I was like, you willfully have to not get married or not get divorced at least twice. There's two times in your life where both of you at some point, like, independently have to go, I'm gonna stay even though I feel like I should set the house on fire and lock all the doors.
That is so honest to you, Scott.
And are you glad you stayed?
Well, yeah, because you don't realize it's it's the same thing with, like, when I see people diagnosed and they're so heartbroken at first. I always say, I'm like, one day you won't feel like this anymore.
Right. You know? Like Right.
Yeah. Think back on all the things you've been upset about in the past that you're not upset about anymore. One day, this thing will be that.
Yes. Exactly. But it's so hard. Like, I look back on that me who was being told by that physician, you know, you gotta chill out. And I was like, he was right, and I couldn't hear it because I didn't have perspective.
And so when I meet people, which I do a lot, you know, who are brand new or new new ish, you know, in their first I think it's I don't know. I'd be curious what you think. But, like, I think it's at least five years, maybe seven before you've been through enough that you have perspective? What do you think? How long do you think it takes?
Does it depend?
Well, so the diabetes is just a new life. And if you
It is.
Yeah. And if you think about, like, you were growing a life and living in experiences, and then suddenly there's, like, a massive shift. Like, you're still you and you still have all your expectations and your knowledge and your and your your memories. But the but suddenly somebody brings, like, a whole new, like, world and says, now you have to live here as well. Like, you have to blend who you are with this new thing.
Yes.
And the only way that can happen and I don't wanna say through acceptance because one of us can sound like a hippie, but it shouldn't be both of us. I'm gonna say that the only way it happens, the way I put it is, you have to have enough experiences over and over again until instead of until it the outcome isn't you going, oh, no. Something new is happening. It's a thing that you just are so accustomed to, you don't have to think about it. Like, the way I always kinda think about where I am with diabetes now and where I feel like everybody will get to at some point is that when you approach a closed door, you don't look at it and think, oh, the door is closed.
I have to reach my hand out and grab that handle and turn it and pull the door to get out of here. That just happens as you walk towards the door. And I and I think diabetes turns into that eventually. Like, there's all these little functionally important steps that you take every time you do one of those things, but eventually, have enough experience that you don't think about it. It just happens.
And so
That is a really great. Honestly, that that metaphor of the door is such an op like an obvious one. That's great.
I only came up with it years ago because I was looking at a door when I thought about it. Had I been looking at something else, I would have made up a different metaphor at the time, but, like, I I appreciate that. It it's just that there's you don't realize how many things you do in the course of a day that have so many pieces to it, so many steps that you just you just mindlessly go through because your body reflexively knows what to do. And then suddenly, somebody throws a thing at you, and you don't understand any of the steps, and it feels like you're gonna die. It feels like you're never gonna get the door open.
But that's not true. You just get up, keep going. Eventually, you'll forget how bad you felt today. You'll be in the future. You will look back, not even recognize yourself, and walk through that door effortlessly.
There. And the foundation of that is good tools. So the answer to your question is, how quickly do you get through it? That I think is two it's two pieces. When do you get the tools and the understanding?
And to me, that means understanding how insulin works. And then how long does it take for you to have those experiences over and over until they feel normal? Mhmm. That's it.
That's it.
Thank god I
didn't get a
real job. This this this podcasting thing is for me.
It's totally for you, and you're giving a lot of wisdom.
Oh, please.
I think there's a if I might add just a third layer to that.
Please.
And that's the develop and maybe it's woven into the one or two layers. I just feel like I need to, like, I don't know, add to the conversation. But it's that kind of emotional, psychological ability to flex with the myriad uncertainties in diabetes. Right? Because as much as now we have tons and tons and tons and tons of data and technology, you know, many many of us, most of us in this country, we're fortunate.
There is still mystery, and it's that, you know, unpredictability that you can have all the tools, you can have all the experience. But, again, to kinda go back to the the mindfulness toolbox that I've I've been working on, you know, for a very long time now, the the tools to roll with the sorrows and the surprises and the I'm doing everything right or I'm doing everything that I did yesterday and why is it so different today. You know, just the the the uncertainty. I I real and the suffering that comes with that. So I feel like that's the the the deeper, skill set that, I wish everybody had.
Yeah. Well, so what what I think the this little unfolding of this conversation points out is that I'm a boy. So when I get to that part, I just put my head down and keep going. And and and it's really important to get a different perspective, which which is the one you just laid out. And I I am not, like I'm not saying that I don't need that part.
I obviously need that part. I just don't describe it the same way, I guess. And I probably don't and I probably don't experience it the same way. And I don't mean to, like, I'm sure it's not as easy as gender, but I'm just using it for the like, I think that what I just said needed a woman's touch. I just as if what if you would have gone first, I would have been like, hey.
Hey. Here's some more of the functional side of it that I think is important. I think the blending of that is what gets you to it.
So true.
Yeah.
I I do I do agree with you totally there, and I recognize that these things come in a lot of different languages and styles. Because I I did hear on one of your recent podcasts, and I'd love to understand more about this, but I guess you've got some pilot thing, some twenty one day thing where you're yeah. That sounds super, super cool. What can
you haven't told anybody.
I haven't really talked a lot about that yet. I'm happy to. I just I realized the other day that I I'm probably one of those people that puts out more stuff than I even have time to tell people about, if that if that makes sense. So Uh-huh. The thing you're describing right now is not actually live.
It's live on my website, but I haven't linked it to anything. Like, there's no way for you to know it's there. So I'll fix this.
Yeah. Yeah.
So right. Exactly. Well, I wanted to slow walk a little bit. I actually got about 50 people who demoed it for me. And I took all their their input and blended their input into a like a final idea.
So so basically, the the pro tip series of the podcast is management stuff.
Mhmm.
And it's I don't know. At this point, honestly, it's twenty five, twenty seven episodes, something like that. I would tell you that if you listen to the pro tip series and even halfway understand it, your a one c will go into the sixes. Mhmm. And I think things will get easier, etcetera.
But a lot of people don't like listening that long. And so I created something called the small sip series, is shorter sort of like ten minute episodes that I don't wanna say mimic the the pro tip series, but they give you the essence of it. Mhmm. Such that, hopefully, you'll think to move on and try longer form to get to a thing. And so I created kind of like a twenty one day, like, a guided reflection, I guess, is maybe the best way to put it, right, about living with diabetes.
So you you get a I don't know. The there you get to the first day. There's this you sort of read about what it's about. You hit a little acknowledgment. You move on.
I can actually reset mine so I can go back to the first day. It's a practice, not a course. Like, there's no pressure. You do it at your own time. You know, there's kind of you know, there's five phases to the entire twenty one days.
So, like, the first phase is the first three days. It's sort of like a settling, like a calming of the nervous system. There's no technique talked about. Just sort of kinda gives you permission to get going. Days four to seven, more about CGM literacy, all about observations, nothing to intervene.
Days eight to twelve, vocabulary for everything that's happening to you. Days thirteen to seventeen, like tiny little experiments, also pure observation. In days eighteen to twenty one, you sort of identify work, recognize who you've become, and then there's an optional twenty second day where you could do a share, like write a note to your care team about what you've learned and what you would like to do moving forward. As you thank you. Well, no.
As you step through it, like, day one, I'll give you just a a brief example. It just tells you there it gives you an affirmation. There's a little quote from one of the episodes. It said the quote is when you understand what's happening, diabetes stops being something that happens to you and becomes something you're doing. And that shift begins the moment you start to look.
There's an affirmation. I'm not behind. I'm starting. And then the noticing, notice how you feel when you check your CGM today, not the number, but the feeling. Are you curious?
Does it feel you fill you with dread, tiredness, nothing? Just notice it. And then there's an option to listen to one of the small sips episodes. And then at the end of the day, you there's a reflection. What did I notice about my relationship to my CGM today?
And then when you're done, you mark that day complete, and it takes you to the second day. I saw some people do it twenty two days in a row. I saw some people take two months to do it. But no matter how long they took to get through it, their feedback was all the same.
What was the feedback?
They found it just comforting, enlightening, told them things about themselves, gave them ideas about what to do next.
“You built an applied mindfulness program”53:26
See, in my in my language, I would say you created an applied mindfulness diabetes program.
Well, do you wanna know what I what I hold on a second. I'm gonna be honest. Let me take a drink.
Yeah. Yeah.
So what I did like, my thought was that I've heard from enough people over enough years. If you listen to that series, you'll do okay. And that's not a selling point to a lot of people. So I went and I looked at how people make money helping people because self help or guided help is a big industry. Mhmm.
And I I basically sat down with my business partner. You might know him. His name's Claude. He's French. And
he Claude Anthropic? Yes.
He and I he and I chatted for a while, and I said to my buddy, I said, Claude, listen. I have everything they need here, but I have no desire to make money from it. But I do think that that that model that people use in the business world is attractive to people for some reason. So let's use the model, but make it free. And then that that was the the where we started.
And then I said I wanna base it off of the pro tip series, but I don't wanna give them hour long episodes when we're offering them content. So let's give them shorter stuff. So let's match up the small sips to the pro tips to do that. And then I don't know. Then I just I spent time working on it, getting it to where I thought it was good.
And then I reached I was lucky enough to have a community I could reach out and and I didn't wanna publicize it. So I'm lucky enough to be able to say, hey. I need help with something. I'm not gonna tell you what it is until you email me. And still 50 people emailed.
So I was like, okay. Here's what I've got. Like, do it. Don't do it. It's up to you.
When you get done, if you get done, would you just send me your feedback? And some people were it is really interesting because some people's feedback was just like, this was worded oddly. Like, on one day, I didn't understand exactly what this meant. So I fixed it. And in some places, they were like, this is perfect.
Don't touch any of this. It's somebody found a typo. You know what I mean? I was like, oh, awesome. Thanks.
You you like, so everybody's input helped, and then I got it back. And now I have to figure out how to put it into the world because I'm not gonna sell it. I'm not gonna be like, hey. Here's the steps to your like, I I don't have that in me to talk to people that way. And so I have to find a way to get it out in the world.
And I figured what I'll do is I'll this time, I'll publicly say what it is and invite people to use it, make sure they understand it's free, and it doesn't there's nothing at the end that asks you for money. It's not an incomplete journey. It's not like a third of the information, and the other two thirds come when you pay me $3,000. Like, it's nothing like that. And so, like, once I figure it gets out there and people have a good experience, they'll probably share it the way they share the podcast.
So, you know, anyway
Very, very, very cool.
Thank you.
Deep listening, and body fullness56:35
Because it really is it's you know, one of the definitions I like of of mindfulness is it's a deep listening practice. Right? So it's awareness. It's awareness. It's listening to ourselves, listening to our our thoughts, our our sensations, and our emotions, right, and our experience.
And so that's that's what your that's what I hear your program offers, which is really essential, right, if we're just going off of data, with our diabetes and not connecting it to our bodies, you know, I like the term body fullness. Right? Connecting connecting what what is a what does a low feel like? What does a high feel like? How does our body respond when we see the double arrows down, our, you know, our minds, our hearts, our, you know, the the fear?
I mean, like, that is a moment that anxiety is natural because it's those double arrows down are telling us, that we are literally headed, you know I mean, it depends on where you are. Like, if you're, like, it's happened to many of us, if you're 70 and double arrows down, that's that's scary. If you're 350 and you're double arrows down, you're celebrating. So even, you know, noticing the differences in your responsiveness or reactiveness, you know, in that that data. It sounds like your, you know, your program is really connecting all that.
I hope so. It's just so cool.
Thank you. I I listen. I'm just a person who like, I've been doing this. This is my twelfth year making this podcast.
And Long time.
And I feel like I keep getting insights into people. And that sometimes those insights are human and sometimes they're more generational or of the moment, if that makes sense. Like, there I have been at this long enough where I can tell you that the zeitgeist wants different things at different times. Mhmm. And and there's a way to meet I I swear to god, I hate saying stuff like this, but there is a way to meet somebody where they are.
Like Mhmm. But you have to keep shifting. You can't say, I made a thing. Use the thing. Because then then society shifts, and they're like, well, yeah.
I mean, I heard that thing looks old, or it's not how I think about it or whatever. Like, you have to keep pivoting with everybody if you wanna I found a way to help them. Like, the the the blessed truth is go listen to the pro tip series. A one c will go in the sixes. But that's not how some people wanna be spoken to.
That's not how some people wanna learn. So you don't just take you don't just take all this information or this collection that you know works and go, well, that person's not interested in listening to a podcast, so screw them. They don't get this. I think, let me find a way to reach the people who would prefer to do it like this. Let me find a way to reach the people who would prefer to do it this way.
I recently, I produced a bunch of songs that are based off of the content in the podcast. And so, like, for little kids to teach them a little bit about their diabetes for tweens. And then I thought, well, this is it feels hokey to do it for an adult. Right? Like, I wouldn't do that.
But what I ended up doing was looking at the conversations between myself and Erica, who I mentioned earlier, Erica Forsyth. She's a therapist who has type one for, god, Erica's had type one for, like, thirty five years maybe. And she and I have these kind of deep conversations about things that I don't think people talk about very often, like worry being a waste of imagination or, you know, that that sort of stuff. And what I learned while I was while, again, my business partner and I were talking is, like, is that I yes. I could take an episode of the podcast, the a pro tip of the podcast and turn it into, like, a ninety second jingle that a five year old could listen to and understand about their diabetes.
But I was like, I wonder if we could turn the mental health conversations into actual songs. Like, what are songs? Like, songs or poems that are that are musical that make you feel a certain way or make you remember a certain thing. And I did that. I came up with a number of adult like, it's weird because it's AI and people like, some people are gonna have a feeling about that and that's fine.
But I'm telling you that they're catchy. You if I didn't tell you they were made with AI, you might not know. And they somehow take the essence of those conversations and build it into into something that, like, actually people I'm getting notes from people like, can't believe I'm crying listening to a song made by a computer. And the point is it's not really made by a computer. It's made by our conversation.
And my dozens of and my, you know, dozen years of having talked to people with type one and being able to lead a conversation with Erica who also has really valuable, you know, additions to make to the conversation. Like, the the conversation is writing a song. You just have to find it and pull it out of it. Just like the pro tip series was writing the guided meditation. You just have to look inside of it, find it, and pull it out of it.
Yeah. And I only figured that out because I have access to AI now. Because I used to spend Heather, you said you've been working on your thing a long time. I I bet you you and I are having the same experience, which is like you look and you go, it's all here. I don't know how to put it together correctly.
Mhmm. And because my brain couldn't hold it all at the same time and Mhmm. And rewire it. But Mhmm. Conversationally was something that could hold all the ideas at the same time.
It it helped me lead me through and then I was like, yes. Take that piece. Put that piece with this piece. That's what this is for. And then I it was just sort of like having a it's like having a virtual blackboard that's kinda infinite.
If that makes sense. Wow.
It does. That's really it's that's really interesting and really, really exciting because I I am definitely, like well, like so many of us. Like, music is it speaks to us and tap helps evoke things in us in unique way.
Yeah. And you have to just get past the embarrassment of it gets like, someone's gonna hear that one of those songs and go, that is so stupid. And somebody is gonna hear it and think, oh my god. That really touched me. And I have to have the I don't know what it is I have to have, the zen to step back and go, some people are gonna look at me and say, wow.
Thank you. And some people are gonna look at me and go, you're an idiot who's blowing up the world with AI. And I have to be able to go, okay, and just keep going. That great like, it helps some people. And so that's the win.
And everybody else who's not helped by it, I'll either look for another thing that might help you or I'll take your condemnation and I'll go. And by the way, lately, if you look at my Instagram, I've been turning my bad reviews into songs with AI.
No way.
It's partially for my own amusement, but and and it helps me learn how to use the like, you can imagine, like, if you're trying to teach this thing how to help you with something, like, how difficult is it to teach it to, like, turn a bad podcast review into an actual singable song? And it's a so it's like it's a fun exercise. It helps me learn how to use, like, different tools and stuff like that. And it makes me laugh because I wish the people knew how much I don't care.
Yeah. That's fun.
I didn't grow up in your I didn't grow up in your online world. I can't see you. You don't exist. So
That's maybe partially generational thing too.
For sure. But I thought did I you said you had kids. I taught it to my kids. Like, when the when the phones got, you know, in everybody's hands and everybody was online, they're like, oh, this person's bullying this person. I'm like, listen.
I'm not for bullying anybody. I'm like, but I don't understand how you got cyberbullied. Turn don't look at it. Over. Yeah.
It's over now. Like, my neighbor, I know for sure, Heather, I live across the street from an actual crazy person. Okay? Mhmm. You'll just have you'll just have to believe me.
Mhmm. I that that woman hates my guts. She hates me. But you know what I do? I don't talk to her, and I'm not aware of it.
You can't let it in.
I just don't is that how people put it? I just think, like, it doesn't doesn't exist. What do I care? Yeah. So Yeah.
So please tell me how like like, the the the thing that, you know, where someone found you at. Like, what's this mindfulness thing look like in person? I mean, how can people, like, go see you in person? How does like, what do you think they get out of it? I wanna hear the whole thing.
Oh, great. I'm I'm so happy to talk about the diabetes sangha. So yeah. So I bet, you know, I told that story about how I discovered this MBSR thing changed my life. Everybody with diabetes needs to have this.
How do we get this out? Blah blah blah. Right before the pandemic, I had been, approached by, an amazing young man, Sam Tolman, who had connected with who's I don't know if he self describes as Buddhist, but he's a very he has a very deep, very deep practice and, you know, does he does all the all the things. And he had met Bill Polonsky, who I mentioned earlier, who had been my mentor, and he and I have kept in touch over over the years. And Sam was telling Bill what he wanted to do, and Bill's like, oh, you need to meet Heather.
And so we met, and then he Sam had been connected with another amazing, young woman, Brooke Cassoff, who was in San Francisco at the time, I think, who was into mindful self compassion and yoga for diabetes and had all these all these amazing, you know, training skills, practices, embodied all this stuff. So they were and then there's another fabulous guy who was diagnosed with LADA in his fifties who's out your neck of the woods out in you're in New Jersey? Is that right? Yeah. Yeah.
He's he's on Long Island. And so they were creating this thing that they called the diabetes sangha. There's there's a lot more you if anybody's curious about more of the back history, you can look on the website. And Sam was like, what do you think about this? I was like, oh my god.
This I've been, like, waiting
for somebody to do this.
You know? I didn't know how to do it, but, yes, this is perfect. Go. I'll be a part. And then I was like, these young people have it.
You know? They're really savvy. I think I had already pretty much gotten off of social media by that point just because I I can't I couldn't really handle it. Mhmm. I'm not I it's it is more powerful than I am.
So I was like, I don't wanna I don't wanna be a part of this. So so I was like, they they can do all that stuff. So go go go. So they got this thing started, and sangha just really means community in, I don't know. Is it Pali or one of those, languages?
And so diabetes sangha. So it's an online community for people with type one who want to come together and have a mindfulness based, you know, meditation space Mhmm. Where we communicate, connect, practice together. And it is really growing thanks to, you know, everyone's efforts and word-of-mouth and, yes, social media and all the all the things. And it is I think
it
offers so much community and, you know, the the suffering that is inherent in diabetes, which I I believe is unique. I have I have another autoimmune disease and, you know, for a while, I was really when I thought I was diagnosed with, ankylosing spondylitis about eight years ago, and I was like, wow. This is weird. This is different. This is, like, accompanied by a whole lot of physical pain, which diabetes for me, thankfully, doesn't doesn't have.
That's not an element of it for me, right now. So the physical pain and then all of that. So I kinda went down into that community for a while, and then I was like, you know and all of these other autoimmune diseases, you know, were all in this whole big community, you know, celiac, Hashimoto's, all that stuff, you know Yep. RA and Crohn's, all that. So and they all seem to have things in common, like what flares, you know, and there's there's a lot that's very, interconnected.
And then through it all, I kept thinking diabetes is so different. It is so different. None of those diseases can you die in an instant if you get your medication wrong. Yeah. None of those conditions have this breath by breath, moment by moment responsibility to stay alive and to prevent all these horrible things from it's just like so it was very helpful for me, interesting to learn all that stuff.
And then I just had this longing to kind of get back to diabetes, you know, community. And so I think what the sangha, you know, provides and, you know, everybody has their own thing that they get from it, is just that space of a shared grief and suffering and knowing. And we don't even talk about all that all that much. You know? No.
What a practice actually looks like1:10:22
But just being and you get it. I mean, you have a whole podcast for twelve years based on the same thing. You know? This is this is a space where, you know, it's really hard to get it if you don't live it or, you know, in your case, be a a parent living with it, which is a whole another, you know, way to way to suffer. And so, you know, the community is really around people wanting to build these practices.
And I you know, the last couple of years, I've really been working on what what are called the, you know, in in the Buddhist language, the Brahma Viharas or the the the divine heart practices because they're they're very they're, again, they're they're skillful. I like this stuff so much because it's practical and, you know, it's not like new age y or whatever. I mean, it's so old and these tools are so helpful for the suffering that that diabetes brings. And in in it, as we practice together, there's all this joy. Right?
There's all this gratitude that is right, dancing with the sorrow. It's it's, it's palpable, and we we talk about that. And I don't know. There's just there's a lot of love. And so the the four divine abodes are these practices of loving kindness, compassion, joy, which are like the warm, you know, fuzzy feel good experiences, practices, ways of being, and then equanimity, which is that all which, you know, you seem like you've you've you do well with that.
I know, like, my husband is much better at that than I am. But equanimity is that practice of walking evenly on uneven ground, being you know, not being so bothered by things, like staying steady, practicing a steadiness, a steadiness of mind, of heart, of being when things are unsteady or unpleasant or even when they're, like, really pleasant, but, like, not getting, you know, taken away by either the, you know, super highs or the super lows. Like, staying maintaining that kind of steady steadiness steadiness of mind, steadiness of heart. And, man, those practices are so helpful. Yeah.
I Trans yeah.
Go ahead. What's it's wonderful. I I it's it takes a person who's been involved in something like this for so long to put all those pieces together. Real really. And and to to be able to offer to another person without them having to spend all the time you had to spend to to make it one cohesive idea.
That's it's just lovely. I I would tell you to the the part about you know, I I just sort of think that all the things around me, they're not me. Right? Like, no matter where you put me, I'm me. And so, I mean, close your eyes.
Right? I'm still I'm still me, and I can't see any of this around me. It just doesn't exist. And when I open my eyes and it's there, I I don't I don't have the anxiety that says, oh gosh. That thing's been in the corner of my room for a year and a half.
I can't believe I haven't thrown it away. Or, like, or done the thing I said I was gonna do with it, or how come we haven't done this? Like, I'm happy wherever I am. And unless something's literally hurting me or the people I love, I'm okay. That I mean, as long as I'm okay, I'm okay.
But I think part of that is, like, I grew up really broke. I didn't have a lot of expectations. I lived through things where it was very hot or very cold or not a lot of food all the time, not a lot of Mhmm. Like, support all the time. You know, there's not always the the feedback from parents that you would hope that a parent would give.
There was, you know, you live with a lot of, like, insecurity and, you know, and and unevenness. And then I don't know if it's a decision you make for people, but, like, I didn't want those things to hold me back. And I really did think, like, the this this won't last forever. Like, so Right?
Like You had that perspective even as a young person.
I think it helps a little that, I'm adopted. So so I'd never, I was adopted as a baby. I don't know another way to both of my parents are dead, so I don't feel badly saying this out loud, I guess. I was adopted by very nice middle class people. And it didn't take me long in my life to realize that when something came up, I had a completely different reaction than they did or an idea about how to move forward or what I thought was important or scary was different than what they were bothered by.
And I later in life sort of I don't know. I sort of started to think about that as like I don't wanna say intelligence, but like capacity maybe. Mhmm. And and so I I I don't know. Like, it I wasn't tied to their reactions the same way as you might be in a more nuclear family where, like, everyone has the same reaction.
They think the same way, so they're reinforced all the time. Like, mom's scared. I feel like mom feels I'm wired like she is. I'm scared too. This must be scary.
Like, my mom would be scared, and I'd think that doesn't seem right to me. Or, you know, where they'd focus on something, and I'd think that's not the thing I would be worried about right here. And so then it just teaches you then you watch and the outcomes go the way you expect, and then that just built on my confidence. I was like, oh, I I think I'm right about things sometimes. Like, I'll learn to trust myself better.
And now if you ask me, the way I usually say it on the podcast to be lighthearted is, like, if the zombies come, you come find me. I'll be okay. Like, we'll we'll be alright when it's over.
And and I That's fantastic.
And I don't know why other than to tell you that often when a question arises, I seem to do a thing or have a reaction that ends up in an outcome that is good. I I I wouldn't even begin to tell you I know the right thing to do. It's not it's not like I assess. I've I've I don't know. Maybe you this might be interesting for you, but do you have a do you have an inner monologue?
Can you hear a voice in your head?
Oh, constantly. Yeah.
I don't have one. Wow. So when you think about things, do you think through like a like, a checklist or, this will happen then, okay, then I'll go to this and this. Like, do you have, like, a thought process you go through when you make a decision? Probably.
It's not always so linear, but there's plenty of there's plenty of thinking happening. So you don't have that.
No. I just know what to do. You just ask me something or put me in a situation and I pause and then I do the right thing very often.
So that response comes from where?
I have no idea. Don't understand it completely. I don't have a I don't have a linear thought process. I don't even the things I'm going to do today, I they're not planned out. I don't have a to do list.
I just do what makes sense to me in the moment.
That is a certain kind of intelligence, I think.
I I don't it might be. It doesn't apply to anything measurable. I was a terrible student. I'm very bad at math. I I wrote a book.
Like, I'm a published author. The last the last thing I did after I wrote my manuscript was ran it through word to find out where the commas were supposed to go.
Like, I
was like, I don't under I don't understand punctuation. I don't understand. I I had to drop out of algebra. I I couldn't wrap my head around it at all. But I don't know.
Bigger thoughts or, like, that kind of thing, that sort of just comes to me. Yeah. Yeah.
It's definitely I mean, it's so unfortunate that that is not encouraged, allowed, nurtured, etcetera in school, but maybe you didn't sounds like you actually didn't even need that.
Scott, you I didn't care about that.
You didn't care? Yeah. You didn't care.
I I really I so genuinely don't care what other people think about me. It's hard to put into words.
Mhmm.
I do wanna be a nice person, and I do want people to look at me and think I want them to see, like, who I actually am because I know I know that, like, I'm brash on the outside. And, like, I'll say to some people, like, I know I come off like an asshole, but I'm not. And or, like but I think that's just because the social norms that go around pretending, I'm not good at. Like, I really did make that twenty one day thing just to put the thumb in the eye of people who are charging people with diabetes a bunch of money to learn how to pre bolus. Mhmm.
I was like, that sucks. They shouldn't do that. I'll give it away for free.
Well, you're really lucky that you've gotten I shouldn't say lucky. I'm sure you you worked you worked this out, but you've got sponsors.
Yeah. I don't need the podcast. Well well, I just I but that doesn't it's not by mistake. I started making this thing, and my my so my guiding my guiding principle on the podcast is is very much, like, one fold, maybe split into two, which is I get up every day and I think, I wonder what these people need. And then I try and then I try to do that thing.
And I'm very guided by the idea that it should not cost you money. Mhmm. Like, there's no world where someone should charge you to learn about how the insulin timing works or what a pre bolus is or is that or that anxiety or adrenaline might hit you when you wake up in the morning. Like, that that's so that should be something somebody tells you. So when I realized I wanted to do what needed to be done and I didn't want people to pay for it, I thought, well, someone's gotta pay for it.
Who's that gonna be? Mhmm. And my first thought was, oh, I'll let Omnipod pay for it. Mhmm. Because I used to because I used to write a blog for them, and I thought, well, I'll just get them to buy an ad on the podcast.
Podcast.
Yeah.
Yeah. And then I did that. And then I was like, oh, well, they did it, and that worked out for them. I'll go ask Dexcom. And then, like and then I was like, okay.
Well, they seem happy, and I'm still helping people. And then people would say, well, you now you're only gonna do what your what your advertisers want you doing. I was like, no. You don't know me. I don't care about that.
Like, if they if they don't like it, then I'll go find somebody else to do it. Like, I'm not gonna do so for a while, I used to have a problem where people thought this was like an Omnipod Dexcom podcast because they were the advertisers. So when I realized that was a problem for people, I went, oh, I'll go get more advertisers so that you know that I don't care which pump
you have.
Right? Right. Like Right. Right. So just because my daughter uses an Omnipod doesn't mean I don't think you wouldn't benefit from a MiniMed Flex.
Like, do you know what mean? Like, if that's the right thing for you, then rock and roll. Like, go. Yes. And so, like, when you built, like so every time I address the problem, it just made the podcast more powerful.
Yeah. Right? Because it it there was more financial backing to give me more time to sit around and think about like, that twenty one day thing, you don't know me, but you might know me better now from this conversation. I don't functionally have the ability to sit down and map that out. Like, that was all conversational.
I came up with that. Mhmm. Right? And I wouldn't have been able to do that three years ago. I actually wouldn't have been able to do it nine months ago.
It's only that the AI, like, voice models got good enough to hold the like, I need somebody to talk to out loud and remember what I'm saying.
Mhmm.
And so, like, so once that was possible, was like, oh, I can work through that. Building that thing took a long time. Like, a lot of car rides for hours talking to AI and having it keep notes for me and then sitting down and hammering through it, making sure it's the way I wanted it to look and all that. Like, no one's doing that for you if they're not gonna charge you $3 to go through it. Okay?
But I am because Right. I don't care about the money because I have advertisers. And I also have a theory about money that that there's only so much, and then I don't think it makes a difference after that.
Mhmm.
And so if you're if you're comfortable, you don't really need more. And and so if you're not driven by finding more money, then you can be driven by finding more people to help. And then oddly enough, sometimes money just comes from that anyway. Yes. So yeah.
Yeah. That's all. That's that's I figured the whole thing out, Heather. Only thing I can't figure out is how to get taller. That that one.
How would you, like, be better if you were taller? Why do you wanna be taller?
Honestly, it's good that I'm not taller. I mean, Heather, if I was a little taller and slightly more handsome, I'd be the governor of a small state. And and and I don't think that would go well.
I And then you couldn't do this podcast.
I joke with people all the time. You're lucky I'm a well intended person, or I would take all your money. And I would have no trouble accomplishing it. I I know the steps. I just apply the steps to good stuff.
Like like yeah. Yeah. Thank god. Well, listen. You're not kidding.
I like, there's people who joke sometimes. They're like, that that podcast is a cult. And I was like, wouldn't that be funny if at the end I was just trying to get all your wives
together? Oh my gosh.
My wife always tells me, she's like, if I ever die, there are gonna be a line of ladies who have kids with diabetes out front holding casserole dishes.
My gosh. Ladies with casserole dishes. That is a very funny image.
She's like, you are a catch for somebody raising a kid with diabetes.
That's a niche.
Yeah. I've got I've got that market covered. We can all go, we can all go have a second life baby with an AI with an autoimmune issue.
I don't know if that's a a category
I'm dating. Point. Not a selling point. Would you like to make a baby with joint pain? Come find me.
But where are you, do you said you have kids. Do they have any autoimmune issues?
One daughter with celiac.
Okay. Alright. Is that you raised her with that, or did she get it later in life?
Oh, yeah. Probably at five, and then another daughter who also has, ankylosing spondylitis.
Oh. So So
tell me. I hear people who have type one and celiac often say if I could give one of these away, they'd give the celiac away. Do you have that feeling? Is it that you find it difficult,
I guess? Have that feeling. Yeah. I think it's funny because I actually heard that I used to facilitate a teen support group in in San Diego, people with diabetes, and one girl said that. She's, like, 13, and she was like, man, celiac is so much harder than diabetes.
Again, I don't I guess I don't like to give, like, very yes or no clean answers. I think it probably depends on the person in the day, you know. So so because I as I've heard you talk about with other people, I mean, diet type one diabetes, if you're paying attention, get basically gives you a gives you disordered eating, and celiac kinda does the same.
Yeah. It's I I don't think people think of it that way, but it's a 100% true. Like, you you get a weird relationship with food when you have type one. Yeah.
Oh, yeah. We're never not thinking about it. Like, a friend yesterday was telling me about this great new app that you can take a picture of your food, and then it tells you if you add this, then it'll be that much more nutritious. And I was like I was like, I am so not interested in an app about my food.
May may may I make a suggestion to everybody listening? Stop making apps. Okay? I've been I've been at this a long time, and the number of you that have come to me and gone, I've made an app, and it's gonna I'm like, no. It's not.
It's not. It even if it does, it's not. Because you know why? Because you can't get it to people. That's why.
That's why that's why poor Heather's here telling you about, you know, the the mindful I I lost the web page now. I I had it open.
Diabetes sangha.
Thank you. Yeah. I wanna I wanna give the URL, but I lost it. Hold on a second. I'll get it back.
The because it's nearly impossible to get people like, to get your thing to anybody. Like, the thing that I just described or even the pro tip series or any of that, like, I'm completely confident in how it helps people. Most of my job is getting it into people's hands. Mhmm. Like, if you wanna know what I what I toil at every day, it's finding ways to let people know, hey.
There's this thing here. It's free. It might help you. You should check it out. Right?
Mhmm. Diabetes why why you gotta pick a word that has an h in a weird spot?
I know. Sangha..com. Diabetessangha.com.
The sangha, and a retreat in Monroe1:27:48
Yeah. I see you're you're leading something tomorrow.
I am.
Yeah. I see it.
8AM Pacific time, 11AM eastern time. Mindfulness So all of those are are free. All the offerings. Most of the offerings are free. We do, there's a retreat coming up in New York this October.
People can check that out if they want a multi day experience led by Sam and Peter. Amazing, amazing humans.
Monroe. Can I tell people? Monroe, New York, October eighth to the eleventh, fall immersive retreat twenty twenty six. An immersive meditation retreat for people living with type one diabetes. Diabetes I I'm not connected, by the way.
I don't make money for this. Diabetessangha.com. You should check it out. Looks cool.
Yeah.
Very nice. Look at that. And and are you there live?
Yeah. Well, the the retreat is live. Yes. The retreat is live.
You are you there? I'm I'm asking.
I oh, I haven't decided yet if I'm gonna go. I did a Brooke Cassoff and I led a live retreat in person, and I was there in out here on the West Coast in April. I have a lot going on this fall, so I'm not sure if I personally am gonna be there. But lots of amazing, cool, super wonderful, compassionate, mindful people with type one diabetes who are also very fun. We laugh a lot in the sangha as well.
So, yeah, I think there are generally five, free guided practices, community sessions throughout the week, oftentimes extra stuff on the sun on Sundays. People who are interested in just, like, showing up in silence and not talking have options to just being in the space with people who have diabetes. There's a lot of sweetness.
I know people listening right now are like, Scott, you should try that. You should try showing up somewhere and shutting up.
It sounds like you have your own ways of listening to yourself, Scott.
I I I I I do my thing. I I just I'm I'm aware of this conversation. Someone will leave a review about this and be like, he did not let her talk. And then
I I talked a lot. Yeah.
Anybody thinks he didn't let me talk, They gotta really pay attention.
On reviews, and what people hear1:30:00
Well, Heather, I'll tell you what I've what I've learned through, joking about people's reviews is one thing. But what what brings a person like, what motivates a person to say, he didn't let that person finish or I was that person was clearly uncomfortable. So I've had a a number of experiences through the years. Like, one time I was talking to this girl in her, like, mid twenties. And I'd listen.
I don't know what we were talking about, but we were joking around about how much her father worked growing up. Mhmm. And and she was trying to paint a picture that I think he had, like, three jobs. And I said, so while you were growing up, you your dad is just that guy that walked in the house, slapped your mom on the ass, ate something, and left again. And she was like, oh my god.
Yeah. Like like, that's exactly what happened. And afterwards, she and I finished. I mean, we had a long conversation. I got this beautiful email from her about how what a great time she had on the podcast, and she was thanking me for 16 different things.
And then a week later, I get an interview that or a review that says, could you not hear how uncomfortable you made that girl? And I was like, Well, that's not actually what happened. But I wonder what happened in your life that that was your takeaway from it. Like and and so I've learned a lot that I when you make a podcast like this and you're just talking like this, that when people have, like, really harsh reactions to it, I wish I could find them, give them a hug, and say, hey. You should figure out what happened in your in your life that you think that that this was your response to this.
Like like, because I'm not a bad person or I wasn't making that girl uncomfortable. As a matter of fact, here's a long letter from her about how much she enjoyed that conversation that I didn't ask her for. She prompt she sent to me on her own. And, like and or, like, he talks over people. Like, there's an I have a review today.
I put it up on Instagram. It's like it's like the diabetes pro tip series is excellent. It's full of great information. Jenny Smith is like she lends, like, such a, like, a blah blah blah to it. It's awesome.
The host cuts people off. I've known Jenny for so long. If you ask Jenny, does Scott cut you off when you're talking? She'd say, no. I don't know what you're talking about.
So what, like, what did that person hear? Like, who cut her off or him off in their life that made them feel like that? Like and that's the I don't know. It's interesting to be able to, like, try to see people from in ways that you don't normally get to in real life. Because in real life, nobody's giving you a review of your conversation with them.
Thank god.
Oh my god. Thank god. Are you kidding me? Can you imagine at the at the end of every personal interaction, you got reviews from people?
Oh my gosh. I would never leave the house. I wouldn't I would go walk barefoot in the woods all the time.
I gotta ask you a question. You said earlier, I'm not on social media because it's like, you said something like I'm it's stronger than me or, like what what what is your reaction to it that that you feel like that?
Why she isn’t on social media1:33:02
Couple things. It hijacks my attention. Right? So you you go on Instagram to check one thing, and then twenty minutes later, you're like, woah. What happened?
Mhmm. That wasn't intentional. Like, it's, like, literally hijacks the brain to suck you in or my my brain.
No. Yeah. For sure.
And that and I don't like that. I've always have an embarrassing quote in my high school yearbook. Like, if only there was more time, I could do so much more. You know?
Like like, watch people beat each other up in a parking lot. Yeah.
Yeah. That's just not nourishing or mean, life is so again, it kinda, like, ties back to the diabetes, I think. Like, every moment I feel like it's precious. And, I mean, I don't remember that all the time, but I I I don't like to I don't like to waste time. I hate sitting in traffic, and it's like social media is, like, really bad traffic for my brain.
And so and then secondly, you know, I have family members who have different, you know, maybe politics and, values and things like that. Probably about I don't know. I don't remember how long ago it was before the pandemic, around 2016, probably. I got, what is the word? Trolled, by my stepbrother, and I found my even just remembering it, Scott, like, can feel in my body my heart starting to race a little bit more.
I feel, like, some heat and some Mhmm. Discomfort rising, and, like, it it hijacked me and I reacted and I didn't like how I don't even remember what I said. You know, it was about something political and really irrelevant. And, I got off that and I was telling my husband what happened, and and he just kinda smiled. He goes, yeah.
I trolled you. And I was like, oh, oh, that's what that is. Yeah. And I immediately got off, and I haven't been on Facebook since then because I didn't like what happened to me really. Like, it just it it totally took over
Yeah.
My brain and my being. And I'm like, if I can do that so easily, like, so quickly, like, that's not mm-mm. I can't be it's like a a drug or something that I had a big bad reaction to.
I just had a conversation yesterday with somebody who I really liked, and, and I've met in person and really liked. But she's not but. She makes TikToks about type one diabetes. And and I said I'm I was telling her, like, I'm a little disturbed that, like, that there's so much diabetes content that's trying to hijack the way the platforms work Because I I'm just listen. I'm I'm snobby about it.
Like, I I would like you to always be trying to help people or or putting something valuable out into the world. And I know that that's not a thing that the the algorithm promotes. So it's also our brains don't, go, oh, look. Here's something incredibly interesting and valuable for me. I'll sit and watch this instead.
Like, you you scroll past it pretty quickly. Right? So so even as that person's talking about, like, well, you know, you try to take clickbaity things and turn them into value and, like and I spend too much time on this and my she said my attention span is too short. I I need to fix that. I just had a baby.
I don't wanna raise my baby in a world of, like, short attention span. But then the content is still like, well, this is what the algorithm wants. This is how we do it. And and it I don't know if I'm just older. I sound like an old man telling you to get off your my lawn or whatever.
Like but it's this is not okay.
Yeah. I agree.
Yeah. And and you really I mean, you're listening to a person say, I know this is wrong. I don't want this for me. I don't want this for my kid, but this is how it is. And my thought is, no.
It's not. It we're letting it be that way.
Right. We do not have to do that. I agree totally.
Yeah. This is
I heard of
yeah. Go Go ahead. I'm sorry. You heard what?
Oh, I just I heard a podcast. I I love podcasts, and, it's so so fun to be here. I was listening to one, functional medicine doctor who who really gave me comfort, and he said, I am not on social media, and you don't have to be. It's a lie that in order to have a business that you have to be on social media. And that was, like, the one authority voice that that, like, affirmed my position, I needed that comfort.
You know? I just it was helpful. It kind of helped shore up, you know, what what I felt instinctively. Like, I'm I really am I'm very concerned about where technology is going and, how it's taking us away from what I think makes us most human and taking us away from from each other and ourselves. And so and I know you some people can do it skillfully, and I'm not bashing technology.
Like, I I mean, I'm wearing a tandem and a and a Dexter Libre right now.
You know
what I mean? I'm, like, about going on to the twist. I love technology when it's helpful, when it's skillful, when it makes things better. And, yeah. It's I don't
I've just been alive long enough now. Like, I I I don't know how you feel, but, like, this last ten years, I'm, like, finally an adult. You know what I mean? Like, I I I I finally have, like, enough. And and I'm actually glad you know, I I I I when I was growing up, I used to say, like, oh, there's so much, like, wisdom in those older people, but they're, like, sitting in a chair, like, oh my god.
And, like, now, like, in our generation, like I mean, look, I'm 55. I feel like I'm 20. And, like, I don't have like, I look back at photos of my parents when they were 55 or my mother and father-in-law, like or, like, they're they look like they're 70 now.
Yeah. We're looking better.
Yeah. Like and I'm like I'm like, maybe, like, people our age are gonna be able to stay in the game a little longer to, like, maybe spread out. So, like, it felt it feels like you spend your whole life absorbing wisdom. And right when you've got it, your brain slows down. You have no ability to, like, regurgitate
it and tell anybody about it.
And so I'm like, maybe this generation will be, like, the first generation of people who, like, are able to, like, gather some wisdom and stay relevant long enough to reshare it. And and I and I don't like, I'm I don't anoint myself with things. Like, I'm just there's things I try to do in the world, and I am gonna bang on this pot for a while until Mhmm. Somebody, like, I guess, listens. Nothing that's happening on social media is real.
Mhmm. It's it's it's is literally, like, empty calories, filler for your life, whatever. However you wanna think about it, I don't possibly care. Right? Like, it's if you if you got rid of it right now, you'd be fine.
And and and all we're doing it's like you're you're the grist in the gristmill. And and if it here's one way I I hope that people will think about it. Facebook, as an example, like, talking about taking technology and doing something good with it. I have a Facebook group that today has 86,000 active members in it, And it's a support group for people with type one diabetes. And if you go look at how it works, it works awesome.
It is fantastic for the people that are in there. They love it. It gains usually about a 150 new people every three days. And it just keeps building and building, and it's wonderful. It's a great use of technology.
More specifically, it's a great use of the Facebook platform.
Sure.
But Facebook started as a community platform. It's not that anymore. Right? It's it's an AI company that sells ads. That's what Meta is now.
It's Meta is an AI company that sells ads. And so if if you can still find I'm still finding a way to use their offering for good. But if you're in Facebook, their goal is to keep you in Facebook so that you can be served more ads So that when you click on their ad, you buy the thing. I was I was talking to an audio consultant the other day, and we were talking about something completely just, you know, about technical about making the podcast. And I looked at and we were on video, and I said to him, I was like, hey, man.
I was like, where'd you get those headphones at? And he answered me. And a day later, I was served an ad for these very obscure headphones that he was wearing.
Oh my gosh. See, isn't that so creepy?
Yeah. And I'm not talking about headphones like the ones you all know about. I'm talking about, like, audio engineer headphones that, like, nobody in the world knows exists.
And and your AI was listening to you.
There there it was. Yeah. An ad for those very obscure obscure headphones. Headphones. Yeah.
I don't need them, by the way. He told me I don't need them. And even when it popped up in front of me, my first thought was like, oh, those there's those headphones. Like, I get like
It's not about what we need.
No. It's never about what we need.
Luckily for me, Heather, I grew up broke. I tell my wife all the time that somebody calls the house to sell us something. I I pick up the phone, and I listen to for a half second, I go, listen. If I needed that, I would know. I don't need you to tell me what I need.
Okay? I'm aware of what I need already. And and so like anyway, when I see like, yes, we want to reach more people with diabetes, but the way that my podcast has been thriving for all these years is the way that things have worked since the beginning of time. It's called word-of-mouth. Mhmm.
When something actually helps somebody, they tell someone else and that's how you get more people. You don't get as many as you want. You're not gonna be rich from it. It's not gonna be some overnight success. You're not gonna go viral.
Like, it but it'll reach the people it's gonna reach, and it'll help the people that it was meant to help. And look at me now. I'm a hippie.
Are you wearing shoes?
I'm not currently wearing shoes. Get
outside and walk on the grass.
I am I am barefoot. I Heather, if I told you where I was right now, you'd laugh at me. But, I am Where
are you?
I'm in my office surrounded by a number of, like, reptiles in giant cages.
Oh, yeah. You're into reptiles. Yeah. That's so cool.
It's just there's plants around me and living things and me in here without my shoes on.
So It takes a hippie to know a hippie.
I'm watching these, like, four little lizards run around and have, like, the nicest little life in there. And all I'm thinking is, like, oh, I'm gonna go give them a cricket to eat after I'm done. And yeah. That's so
That's I so great. I love that visual. That is so fantastic.
My kids got older, and I had nothing to nourish anymore.
Yeah. That makes sense. Yeah. I get it.
I needed something to keep alive so that I felt valuable on the planet. Alright. Anyway, you were really awesome. I appreciate you doing this with me. It's a it's a nice this couldn't have possibly gone the way you expected it to, did it?
I I you know what, Scott? Truly, I was like, I have no idea what to expect. I am going in there with curiosity. And, yeah, with curiosity and compassion for both
of us because when you're in
a new interaction, you know, nobody knows. There's just so much uncertainty. But what I did know about you was that you're very conversational and very curious and very observant. So I had a little heads up. I knew something about you, and you didn't know much about me, but that doesn't that's how you roll.
Oh, have
you ever
met in person?
No. I don't.
No. No. Okay. Do you ever do go to the things? I started going to the things this year.
Very cool. Yeah. I think which things I because I do. I have I mean, in I've been in and out of the professional diabetes world, you know, for twenty five years. So sometimes I'm like, I was at New Orleans for the big diabetes educator thing a couple of years ago with Sam and Peter from the Sangha.
We did a really nice talk for diabetes educators on this topic, you know, mindfulness for the educators because, I mean, gosh, Scott, we could do a whole other podcast about how our healthcare system is so strained and our providers need compassion, self compassion tools to ground themselves and stay connected to us, right, with, an open and loving heart and all the information they have. But that's another
Well, they they burn out they burn out just like the patients do.
Totally. Of course. I mean, there's there's so much strain and so much suffering. So, anyway, we did that. That was the last time I was at one of the big things.
Well, I guess I went to TCYD last last summer. So which things are you going to do this year?
I did ADA this year.
Oh, good.
I went to France.
What would you do there?
I actually I kinda partnered with so here's how this started is that last year so I previous to last year, I only do something called Touch by Type one in Orlando. I used to do a lot of JDRF speaking, but I stopped doing that. And I mainly, when I do my speaking, do I go to touch by type one. But, anyway, I went to Friends for Life last year for the first time, and it turned into a thing where I had this experience that I it's gonna sound like I'm bragging. But I I got there and realized, like, I the when I when I left, I thought, oh, I'm gonna go meet new people and tell them about the podcast.
And instead, what I found was a room with 2,000 people in it and three quarters of them already listened to my podcast. And so it was not a it was not a business boon for me, but it was a really it was an interesting experience to watch everybody be together. And, and it turned into, like, just kind of, like, a lovely meet and greet for me. But because I was I I don't know how to put this exact I'm, like, catnip at that thing. And so Mhmm.
And so somebody who makes the thin you know, sugar pixel, that little, like, screen that has your blood sugar on it, like, shakes your bed if you get too low or something. Like, it's a it's
just I a don't know. I've heard you talk about it on the podcast, but I don't know what it is.
So the the gentleman that makes the sugar pixel, his name's John. And he was there, and he's an astute guy. And he looked over, and he goes, that guy is like like, he's really drawing a crowd. And so, like, he's like, would you come with me and, like, do a giveaway? Like and, like, promote, like, promote the podcast and, like, and everything.
I was like, whatever, man. I was like, I'll I'll hang out with you. Like you know? So we did this little, like, I don't know, parade around the hall in Friends for Life, and then we went back in the corner. And we must have had, I'm gonna guess, 300 people with us at that point.
And, like, he gave away a couple SugarPixels. And when it was over, he said to me, would you like to come next year and be at my booth for this stuff? And I was like, sure? So I went to ADA with him this year, and, basically, I'm the pretty girl that leans on the car at the SugarPixel booth. Visually, it doesn't work out that way, but functionally, it works that way.
And and so we did that, and we went to Friends for Life. Next week, I'm going to ADCES in Ohio with John. And they're actually they're I'm good I'm very interested in talking to clinicians about how I think the podcast works. I've just I'm in the middle of doing the survey with listeners to find out about their, you know, their their takeaways from from listening and stuff like that, and probably we'll share that with some people on there. And then I think I do touch by type one in September.
And back in June, I took about a 100 listeners on a cruise. So I did a lot this year after, like, the year before. Like, I was like, I went to Friends for Life and this year I did like a thousand things. So I'm trying to figure out where the balance is around that. Mhmm.
And so I'm working that through right now. So Yeah. It's still interesting. It's interesting to do. It's it's really nice to I'm sure you have the same feeling when you meet people in person.
But for me, it's a little different. I don't have type one. And so to watch people with type one come together and so instantly mesh together and become friendly and calm and relaxed and comfortable was a a really, a a kind of a wonderful learning experience for me. You know?
Does your daughter go to the things?
She doesn't. She's gonna come to, I think she's gonna come to touch by type one with me this year. I shouldn't say that out loud. But because she'll be like, oh, no. She's like, everybody's gonna be around.
Like, no. It'll be fine. Like, she's have a thing at touch by type one I need a little help with. And so I was like, can you come and, like, stand at my table when I can't be at my table? And she's like, okay.
I said, you can lay in the sun the day we get there. And she goes, oh, okay.
That's the incentive.
I was like, I'll bring oh, I said, we'll go in a day earlier. You can you can lay by the pool. And she's like, well, that doesn't sound bad. And I was like, alright. I said, does the rest of it sound bad?
She goes, no. But it's, like, inside. And I was like, I know. So Mhmm. Yeah.
So we're gonna do that. It's nice. We she and I made an Omnipod commercial together this year too.
Oh, wow.
Yeah. Which was
Where where do we find that commercial?
It's just on Omnipod social media.
So Well, so I won't ever see
it. Yeah. You're not gonna see it.
It's I'm never gonna see it.
But it was really, it was a nice experience because it was kind of the first, like, diabetes thing that wasn't about her diabetes that we ever did together.
Aw.
And so it was, like, a nice day we spent, like, you know, just doing the thing. It was it was it was really a nice experience.
That's really sweet.
Alright. That's really sweet.
Well, thanks again. I'll let you go back to I know this is way longer than you expected it to be, so I'll let you get back to your life.
Great.
Alright. Thanks so much. Hold on. It's nice
meet you.
You too.
Okay.
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