#1244 Juicy Jaw
Episode 1244: The Importance of Authenticity in Diabetes Support
Melissa highlights the value of authenticity and honesty in diabetes support communities in this insightful episode. Learn how sharing genuine experiences can foster understanding and support among individuals managing diabetes. Melissa emphasizes the importance of personal connections and how they can enhance the effectiveness of diabetes management advice and support. Tune in to discover the power of authenticity in diabetes care.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to episode 1244 of the Juicebox Podcast.
Today I'll be speaking with Melissa she has a 12 year old son named Anthony who has type one diabetes and she came on the show today because she feels like she might owe Anthony an apology. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. I know that Facebook has a bad reputation, but please give the private Facebook group for the Juicebox Podcast a healthy once over Juicebox Podcast type one diabetes. If you're a US resident who has type one diabetes or is the caregiver of someone with type one and a US resident please go to T one D exchange.org/juice. Box and complete the survey when you finish the survey you are helping to support type one diabetes research he won the exchange.org/juice box thank you so much.
This show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash juicebox. This episode of The Juicebox Podcast is sponsored by ever since the ever since CGM is more convenient requiring only one sensor every six months. It offers more flexibility with its easy on Easy Off smart transmitter and allows you to take a break when needed ever since cgm.com/juicebox. Today's episode is sponsored by Medtronic diabetes, a company that's bringing together people who are redefining what it means to live with diabetes. Later in this episode, I'll be speaking with Mark, he was diagnosed with type one diabetes at 28. He's 47. Now he's going to tell you a little bit about his story. To hear more stories from the Medtronic champion community or to share your own story. Visit Medtronic diabetes.com/juice box and check out the Medtronic champion hashtag on social media.
Melissa 2:33
I'm Melissa. I am 43 years old and I'm a mom to two children. One of them my son, he is 12 and he is a type one diabetic.
Scott Benner 2:45
So your son is 12. He's got type one. How old was he? When he was diagnosed?
Melissa 2:49
He was right after his 11th birthday. Oh, this is pretty recent than last year. So like a year and a half. It was eight. He turned 11 in April. And then he was diagnosed may 2022. Was
Scott Benner 3:03
this complete surprise? Or is there a type one in your family? complete
Melissa 3:07
surprise. I had no idea. I think after listening to the podcast and hearing you talk to other people and ask them like Do you have any autoimmune in your family? Like I can go back to like my Nana, who always held our hands are kind of wham was like my hands and I can't I don't have any tears. I can't cry and they don't know what's wrong with me like those kinds of things. My dad has type two, and he has very severe psoriasis like kept him out of the army at the time psoriasis. So there's definitely autoimmune in the family. But no type one. Wow.
Scott Benner 3:39
Yeah, you gotta love fig. You found all of them like that. Was it interesting for you to pick through and go? No tears? Hold on a second. And like, Did you look into it? You go online.
Melissa 3:49
So we didn't. So my Nana and I were not close. So at the time, I just sort of like would roll my eyes at it. And it wasn't until Hearing you say that, that I was like, oh, wait a minute, that might have actually been a thing. Yeah. So just sort of put it in the autoimmune basket. Yeah, I
Scott Benner 4:06
don't know. Something. I never know if I pronounced it right. But so so drugs, so drugs, maybe s j o g r e n s, that's probably that.
Melissa 4:15
And I've never ever heard of that. So Ra
Scott Benner 4:17
probably right. You're you're describing with their hands. You think she might have had like our like, rice. Okay. Wow, okay. And wait, your father. What war did it keep him out of
Melissa 4:30
no war. He just wanted to join the army. So he's an identical twin. And right after high school him and his twin brother were going to join the army and his brother who, incidentally it's funny because they share all the same afflictions but he doesn't have psoriasis. And so his my dad psoriasis kept him out of the army. And my uncle went on to join
Scott Benner 4:49
the army. What year was that? You know, like, like, roughly though? Yep. So
Melissa 4:53
my dad graduated high school in 1977. Couldn't get in
Scott Benner 4:57
the Army in 77 because of dry skin. I must have been insane.
Melissa 5:01
Yeah, yeah. And he's gone through like, you know, different light treatments, different medications to try and he has it for the most part under control. He's on, I think humera for it. And so he'll look at, it's gonna be like, Oh, it's fine. I don't need this humera anymore, and then he'll have a flare up. And I'm like, yeah, that's how you stay on the humera.
Scott Benner 5:20
Yeah, yeah, yeah, well, that those injectables are are fairly new, but pretty impressive for what they accomplished so far. Okay. All right. Yeah. All right. So your son is 12. He's a type one for a year. Why are you on the podcast?
Melissa 5:34
I just really looking back after his diagnosis, couldn't believe, number one, how I gaslighted my own son. Like after the diagnosis, I'm divorced. And I'm remarried. And his father is also remarried. And it got to the point where I said, for the four of us, like we owe this kid a collective apology, because he has a little bit of anxiety. And every symptom could be explained away by either a growth spurt or a little bit of anxiety. And so it was important for me to really apologize to him because he had said, I think something's wrong. And maybe we should go to the doctor. And I'm like, Anthony, we've gone to the doctor about other things, and you're fine. And I think it's a growth spurt, or I think it's anxiety, I think it's really taking the time to be like, listen, we owe you an apology over the things that you said, were happening to your body. And I assumptions like, you're fine. And I also co parent drew diabetes with my ex husband and his wife. And you know, me and my husband are trying to figure it out our way and you're talking about four very different personalities and how you manage diabetes, with these four different personalities.
Scott Benner 6:42
A quick Google is anxiety, autoimmune. And anxiety disorder can be caused by multiple factors such as genetics, environmental stressors and medical conditions. New research also indicates that chronic anxiety symptoms that will not go away can be due to an autoimmune response triggered by common infections. I'm telling you, I am not a doctor. I'm not a researcher. I've been doing this podcast long enough. I don't think I've ever met somebody who has type one in their family who doesn't also start talking about oh, my sister, her sister's very anxious or my aunt was or like, I don't know, like, it just, it feels hard to ignore to me. You know?
Melissa 7:19
Like, that's totally reasonable and my whole like, there's a whole side of my family. I mean, we'll be choking and I'm like, who's got the out of band because I don't have mine. And we are
Scott Benner 7:30
that's just how we are. Finally this anxiety came through for your son and it got he was like, No, I'm I know something's wrong. Like it's almost like when people think someone's following them and then eventually they are you like Okay, your paranoia finally paid off. How long did that go on for were you just like Nah man, you're fine. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hype open mind daughter carries G voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you store G vo Capo pen and how to use it. They need to know how to use G Bo Capo pen before an emergency situation happens. Learn more about why G vo Kibo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit je voc glucagon.com/risk For safety information.
Melissa 9:01
Oh just it was probably only like a week or 10 days. Like it wasn't as epically long amount of time. But he would wake up and say I peed the bed. And I would go into the bedroom. And I'm like your bed just isn't wet. So what I think is happening is like you're starting to pee a little bit and you're waking yourself up and you're going to the bathroom. And I think you're probably sleeping through it because you're going through a growth spurt. And you just It's fine. It's probably normal because you're not like wetting the bed. And he would get in the car and he's like, Well, I need to know how long this is going to take because I'm gonna have to use the bathroom. And I was like, buddy, this anxiety like whatever you have, because he hyper focuses on things right? And so you're like, you have now started focusing so much on needing to go to the bathroom that you're willing yourself to need to use the bathroom every 10 minutes.
Scott Benner 9:47
He's like, No, my pancreas isn't working.
Melissa 9:51
Like so there's this other thing and if you would just listen to me.
Scott Benner 9:54
Well also, I've only met like 412 year olds have ever known anything reasonable. So I mean I I Listen, I think you're being hard on yourself saying you guess, let the kid but I get your point. So well,
Melissa 10:04
I also wanted him to know like if there's something wrong, like I needed to do a better job of listening to him, like,
Scott Benner 10:10
you definitely owe them an apology but I don't think you're gaslighting him I think you were just going through, you know normal steps of problem solving and you know, for a busy person and time and you know him and all the other factors, given his anxiety and what you've seen in the past, it doesn't sound like you were just ignoring him. It just sounds like it took a took 10 days to get to it. That's not I'm like, that's bad. You
Melissa 10:36
know, and I mean, thankfully, you know, he got, he had gone to dance, he dances and he had gone to dance. And the dance teacher called me and was like, I think you should come pick him up, doing this weird kind of breathing. And thankfully, I was working from home because I have a salon studio at home as well. So I ran out, I was working, I was able to just leave my client for two seconds, pick him up from dance, put him in the living room, and I'm going to be right back, finished up my client. And I went and we just looked at each other. And he was breathing a little bit. And I just looked at him. And I said, Okay, I need you to go get a bag. We're going to the emergency room. And I looked at my husband and this is the weirdest thing. I looked at him and I said, he has diabetes, and we have to go to the emergency room.
Scott Benner 11:19
How did you know that?
Melissa 11:20
I have no idea.
Scott Benner 11:26
Showing off now, okay, I swear
Melissa 11:28
to God. I said, I don't even know what makes me think this there was a doctor's appointment, like, a couple of years before and I was like he's paying a lot. Could it be diabetes? And they checked the sugar? And they said, No, he's fine. And so I don't even know why it took me so long to get to that. He's been a lot. He has diabetes. But we just looked at each other. And I said, go get in a car. And yeah, he has diabetes. Well,
Scott Benner 11:51
the ping a lot thing. I mean, did your dad did that? Was that a thing that happened to your father was type two? No.
Melissa 11:58
So my dad is, you know, an Irish Catholics stoic kind of man. And I don't know that I would think he lives with me now. So he's been living with me since June. So now I would pick up on different things. But my dad, he would just like I'm fine. Don't worry about it. So I don't even know that I know leading up to it. What made him other than going to a routine appointment, and I'm saying you're a onesies. Hi, about
Scott Benner 12:23
that. Okay. All right. You by the way, the cool small respirations being picked up by a dance teacher. Well done. You
Melissa 12:29
know, whose husband is actually type one. But
Scott Benner 12:33
that's not what she saw. She just saw Hey, the kids breathing weird. I don't want him dying.
Melissa 12:37
Yes, the kids breathing weird. And he's having a hard time catching his breath. He doesn't seem sick. But he's having a hard time catching his breath. I think you should come get him.
Scott Benner 12:45
Wow. Okay, well, so see, you're giving yourself a problem. But you figured it out in 10 days.
Melissa 12:52
His sugar wasn't even he was in DKA, which was terrifying. Because we went to the doctor, we went to the emergency room and the doctor check that sugar and everything started moving really fast. Like everything in the room just started moving really fast. And he came in and he said, we called Boston med flight. And I was like, wait, I can't get on a helicopter what? And they said no, no, no, just the just the ambulance we need to do to get in town. Because he knew he looked at Anthony. He was great with Anthony. And he said, You are very sick. And we can't take care of you're here. But you're going to be okay. And they're going to take care of you in town. And I asked him to step out of the room. And I said I just I don't understand what's happening. Because is he in danger? You said he's very sick. And the doctor said, you know, he's gonna be okay, but you're about two days away from losing him. Wow. And I just will never forget that moment. I thought like, it was like, have you seen the TV like, everything got black around me and everything was shrinking around me. So obviously that was a very life changing day for all of us. And my ex husband made it to the hospital before the ambulance I was gonna go on the ambulance with my ex husband made it and I saw the look on my ex husband's face and I just had to grab him look at him and say Look at me. He's gonna be okay. But there's that moment where we know nothing about diabetes, but we were just hold we could have lost him in two days. Yeah,
Scott Benner 14:14
I remember being told that we did a good job getting to the hospital before Arden was in a coma that didn't feel like I did a good job by the way it felt Yeah, yeah.
Melissa 14:24
And it's like that's a sick to your stomach like the back of my jaw starts watering when I even tell the story like sick to my stomach Bolus.
Scott Benner 14:31
I've never heard anybody say the back of my jaw starts watering Yeah, you get like juicy
Melissa 14:35
jaw. When you start thinking about things that make you feel bad.
Scott Benner 14:39
You gotta be real careful. Your episodes gonna be called juicy jaw say some pretty amazing in the next 45 minutes.
Melissa 14:49
I need to come up with something else that cannot be trusted right now. No person in my family will see that episode. No go that's my lesson. Why'd you stop? I'm getting juicy jobs. I
Scott Benner 15:02
gotta be honest, just let it go. It's gonna be called juicy jobs. So there's this thing in your note that I'm, I'm super interested in talking about. So you said you're a small business owner, you're a hairdresser, right? Yeah, yeah. And you talked here about, like just trying to keep your business going and, and dealing with all this after the diagnosis. And I don't think we talked about that stuff at NAB. So I was wondering if you would walk me through what happened and where the difficulties were being
Melissa 15:28
behind my chair, I've been doing hair for almost 24 years now. And I still have very, very high client retention, like I have my very first client still. And so I live my life, like six weeks at a time, right. So any big, major thing that happens in my life, I have to replay with these people over and over and over again, for up to six weeks, because that's about the lifecycle of somebody's hair, and their appointments. So like I've had major traumas happen in my life, like I had a brother who passed away just over four years ago. And so like the very first person that gets in my car, and I'm like, Oh, my brother passed away. And we have to go through that story every single time. So that happens, and I go back to work after the five days in the hospital, and you're so new with this, thank God for technology. But I have these numbers now coming across my watch, I at the time, really have no idea what they mean, because I found the podcast while we were in the hospital, but I haven't gone far enough in it. And you know, like you say that don't die advice is all that we're going on initially. So you're having doctor's appointment, I specifically went out and bought air pods, because I would pop these air pods in behind my chair, do doctor's appointments, be talking to the school who at the time that school didn't even have a nurse, I had to like go in and show them how to figure out his carb count. And so we would get calls at lunchtime. And all the while you're doing all these things. And you're still trying to provide somebody with like a luxury service, and be able to maintain the integrity of that appointment and the integrity of your business. Thankfully, I own my business with my best friend. So where if I fall down, she's able to pick up and when she something happens with her, I'm able to pick up where she is feeling like she's lacking. So if he was sick, there were days that I had to call out and be like, I just need to be home with him. And thankfully, I do have a Salon Suite at home. So I would have people come to the house as well. But there were there was a day where he was sick, and I could not get his blood sugar down and the hospital was like it's time to come in now. And so you're canceling clients, which I don't do, like I very rarely if do I get sick? Do I need a sick day? Do I take time off last minute. And it's really hard, especially when people are sitting in their chair. And I say this a lot in the Facebook group. People talking about like, oh, this person said, I should take cinnamon and they will be very easily offended by someone. And I know that people you intentioned matter. Right? Right. Like if you're willing to attend. So for six weeks that we're going through Anthony's diagnosis, people would say, Oh, I totally understand. And I would say Oh, you do your tour instead? And they would say, Oh, my cat has diabetes, as well. Yeah. Oh, I don't know that if it's totally the same thing. But they're well intended. Right? So very similar.
Scott Benner 18:24
Did you ever hug your ex at a hospital? Because that's how horrible your life was? Because I hadn't hugged him in a while before that.
Melissa 18:30
And I had to like put my hands on him. So I'm just going to ask them maybe you understand it's not the same thing? Yeah.
Scott Benner 18:36
What's your cat life flighted anywhere by any chance?
Melissa 18:41
And like, I don't know that if something very dramatic happens to your cat that I'm gonna feel the same way as if it happens to my child. Yeah,
Scott Benner 18:47
that's I mean, listen, I I'm all for people loving their pets. But that's a weird, you know, a weird example to give somebody but again, like you're saying, well intended, well
Melissa 18:55
intended. And so when people talk to you, and they say, Oh, that's great. He's on a pump. So you don't have to worry about anything. And I think you can do two things you can get upset about it and be like you don't even understand. Or you can use that as an opportunity to speak back into somebody who maybe needs a shift in their thinking, and he needs more information. And then it's like a spider web and they can go out and be like, Oh, I was wrong in my thinking. My hairdresser. Son has diabetes. And she told me X, Y and Z.
Scott Benner 19:23
Yeah, it's a nice idea just to say, you know, well, actually, it eliminates her having to do injections, but you know, doesn't make the diabetes easier or less dangerous or, you know, impactful. You want to know more? Or is that you know, have I have I bored you enough with the thing you heard that you thought was was the truth, right? Yeah. Can I ask this you just talked about like people's lifecycle of their hair being about six weeks. And you've been doing this for a very long time. But does that feeling ever go away? When when when a client walks out like God I hope they come back if Don't come back, this all falls apart. If this falls apart, I can't pay my bills like that that feeling that small business owners have? Have you lost that?
Melissa 20:06
You definitely know as a small business owner like this is how much we need to pay the bills. But specifically as it pertains to doing hair, there are some people who you're like begging for them not to come back. You're like, listen, we are not a good fit, right? Like if people say, no hairdressers ever been able to get my hair, right, the chances of me doing it right are very slim. Yeah, like, common denominator here is not me, right. And there are some people and you look at it, like every time someone leaves, you get a new person that you might be better situated to work with. But there's definitely that fear, especially with now with post COVID. When we had supply chain issues and inflation, and issues like that, like nemenhah, we need to hold on to every single person, and they need to keep their appointments, and we need to make sure that we can maintain the business. But I think that because we are a small business, and we put family first it's like, listen, we're doing the best we can, and we put the good energy out into the world. And hopefully, we just can make enough to maintain the business and have our income, be what it needs to be. And we just want to do the best we can for our clients. Anything at the end of the day. That's what we're trying to
Scott Benner 21:22
do. Yeah, no, I just I recognized my own life and what you were saying because, you know, aside from making the podcast, and it being this valuable thing for people, so it's obviously something that you want to keep doing, for those of you who aren't lucky enough to be in a position like this, like helping people like actually helping them is, is incredibly fulfilling. And so like, just from that perspective, I don't want this to stop. But I am also like, you know, I'm a I'm a person, I have a family and and I need to I have bills like to pay. And so from a professional point, I don't want this to stop either. And, you know, so while your things he felt like to me like it's on a, like a six week clock, I'm on this crazy clock where January 1 comes, and I am on a med tear to provide good content, stuff that helps people, you know, that keep it entertaining, stay ahead of other content providers, as far as you know, like, you know, new ideas and like, you know, you're constantly you're striving to put out stuff that people want to hear that will actually help them like that's my mix, I want to I want it to be entertaining, and I want to be valuable. Yeah.
Melissa 22:31
And then we do definitely the same thing behind the chair, we want to provide an environment like, we keep it very light at the salon, like it's very fun. It's a fun environment. We're making sure actually my business partner, and I also educate for the color company that we use at the salon. So we try to stay as current as we possibly can we try to give these clients really an experience that they know that they're valued, but we also value their time. So we can get them in and out as fast as possible. Some people want to stay with us all day. And that's great. That's the best. But it's also trying to find that balance. Like there was a time when it was like no, no, no, my clients versus my clients first. And I've definitely had to shift yours. Because my clients were providing my income. And I've had to shift gears and say, I need to put my family first. And hopefully I can strike that balance that I really need. And it's it's hard. And I think you know, when you and I were speaking earlier, it is hard, because you pour so much of yourself into it, that if something doesn't work out, it's hard not to take it so personally, and take it personally from the business perspective as well. Yeah. And then you know, right after diagnosis, my poor clients are sitting there and I'm trying to provide them and I love what I do. I really love what I do. And there's a alarm going off and one of the girls in the salon is like is the higher low and we're running to bind my phone to figure out what's going on just those are just not how it's supposed to go. But it's just the way it's gonna go
Scott Benner 23:53
right and so you're trying to provide this episode of The Juicebox Podcast is sponsored by the only CGM you can take off to get into the shower. The ever since CGM ever since cgm.com/juice. Box. Well, I mean, sure, you could take the other ones off, but then you'd waste the sensor and have to start over again. But not with ever since ever since is a six month where implantable CGM. So if you want to take a shower without anything hanging on, you pop off the transmitter jump in the shower, when you get back out, put it back on, and you're right back to where you started. Come to think of it. You could do that whenever you wanted to. Maybe it was your prom night or your wedding day. Maybe you just don't want the thing on for a little while. But you don't want to go all through the hassle of taking it off and having to restart it and you know, starting back over with like wonky numbers and having you know all that that goes with it when you take off the CGM and put it back on Oh, but you don't have to do that with the Eversense CGM. Because ever since is the only long term CGM with six months of real time glucose readings. This gives you more More confidence, more convenience and flexibility. The Eversense CGM is there for you, when you want discretion, a break, or maybe just a little adult time, ever since cgm.com/juice box, pop that transmitter off, pop it back on, you're right back where you started without any wasted devices, or time. Right now we're going to hear from a member of the Medtronic champion community. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes. And this is Mark.
David 25:31
I use injections for about six months. And then my endocrinologist in the Navy recommended a pump. How long
Scott Benner 25:37
had you been in the Navy? Eight years up to that point? I've interviewed a number of people who have been diagnosed during service and most of the time they're discharged. What happened to you?
David 25:47
I was medically discharged. Yeah, six months after my diagnosis. Was
Scott Benner 25:50
it your goal to stay in the Navy for your whole life? Your career was?
David 25:54
Yeah, yeah. In fact, I think a few months before my diagnosis, my wife and I had that discussion about, you know, staying in for the long term. And, you know, we made the decision, despite all the hardships and time away from home, that was what we loved the
Scott Benner 26:08
most, was the Navy, like a lifetime goal of yours? lifetime goal.
David 26:12
I mean, as my earliest childhood memories, were flying, being a fighter pilot,
Scott Benner 26:17
how did your diagnosis impact your lifelong dream?
David 26:20
It was devastating. Everything I had done in life, everything I'd worked up to up to that point was just taken away in an instant, I was not prepared for that at all. What does your support system look like? friends, your family caregivers, you know, for me to Medtronic, champions, community, you know, all those resources that are out there to help guide the way but then help keep abreast on you know, the new things that are coming down the pike, and to give you hope for eventually, that we can find a cure, you
Scott Benner 26:46
can hear more stories from Medtronic champions, and share your own story at Medtronic diabetes.com/juicebox, and experience and a good haircut and add value so that people come back. My thing is, I'm basically piling up downloads, listens, right? Like, I need a certain amount of listens in a bucket by July, to entice the advertisers to have a conversation in October about coming back for the next year. So the first six months are just like, make a mad dash to make download. And then it turns into a sales thing. And then after the sales thing, then it turns into a negotiation. And then he then they they resign up and then that was the hat the lead, by the way. And while I'm doing that, for the last half of the year, I'm also still providing content and like that that part didn't change. I'm just now I have two jobs. And then finally, I mean, it's November 29. You and I are talking right now. And I'm still waiting on. I'm still waiting on two confirmations for advertisers for next year. And if they like for some reason don't come back. Then the other advertisers will think Well, where did they go? How come they don't want to advertise on that show anymore? And then it starts. Now next year, I'm like, Well, this is it this last year, the podcast, like you have no idea how many times I've thought this is the last year of the podcast, I can't keep this going anymore. That's it. It's not just up to me just making good content is not enough. Like you know, blah, blah, blah. And, and for me, my hairdresser, my clients, their hair stops growing, some of them. So some people just love the podcast, they listen to it constantly, which God bless them. And thank you very much for listening. But some people are just here for management. And then they get their management in order and they go I don't need that podcast anymore. And now I did all that work to find that person. And now they're gone. And so like, the reason I brought all that up is because it's so resonated with me when you said I don't get sick, I don't have time to be sick. I feel the same way. I'm like, I don't know how people who don't work for somebody else. Even like I you know, I've heard people say over the years like I don't get sick days I work for myself is a pretty like surface way of saying it. But the real truth is there's no one else. There's no one else keeping the ship up. Like I do it or it doesn't happen. It's
Melissa 29:06
panic. It's like panic inducing. You know, when it's my my husband, Duggal, I'm taking those day off and I'm like, oh, that must be nice. Let me know how you enjoy your nice day. And if I have a client cancel, I'm like, Oh, well, do I need an only fans now like what am I going to do?
Scott Benner 29:24
How do my feet look?
Melissa 29:27
Really nice feet guy some money off. But it's just like, really hard not to be like self deprecating self loading like you lose a client like everybody hates me. I'm never going to be able to provide for my family. What am I gonna do? It's very hard you're
Scott Benner 29:43
gonna hear eight to 10 episodes. You've already heard them now because the way the recording skill but you'll you've heard eight to 10 episodes of me recording with COVID like like sitting here, like falling apart like sweating with a fever making this pocket you will never know you Have you heard this podcast recorded while I have bronchitis? You've heard this podcast recorded wha? My mom was literally dying. Like you've heard this podcast recorded while I was so worried about my children that I thought I was gonna go crazy while my wife was sick, and I was sick to my stomach, like, you're never going to know that. And these are situations where most people would go, I'm going to take a day off today. Yep. But my point is that we never talked about this so much. And listen, even if you work for somebody else that comes with its own problems. And now you're taking time off on hey, my kids blood sugar, I'm learning about diabetes. I don't know what to do. You hear people say all the time, I had to quit my job when my kid was diagnosed, like, you know, because my, they were gonna fire me because I couldn't come in and I wasn't figuring it out in time, in a weird way or lucky you at least could turn to your person and say, Look, you know me, I'm gonna do a good job cutting your hair, but you gotta give me 10 minutes here, you know, so
Melissa 30:52
Oh, absolutely. And I'll go in the back room, and next color, and there'll be tears coming down my my eyes, tuck them down my face. Because you'll try and hold it together. I mean, I've been doing this so long. I went through my divorce. I went through my brother dying. I went through my grandmother die. And I went through Anthony's diagnosis. And the beauty of this is that in my specific situation, I do like with these people, right? Like, some of these people have been coming to me, literally 24 years. I've seen them grow, marriages, divorces, kids, sickness, happiness I've seen them through. So we are essentially doing life together. And so sometimes it's, you know, it's a particularly hard blood sugar day, and I can't get him off the roller coaster. I will put the phone on speaker and put it on my station. And they're my clients like, Hey, Anthony, you know, and I'm very thankful, very lucky for that in that situation. But even some of my clients who are nurse practitioners will like, you know, most of this would warrant like a leave of absence. That's great. Should I start a like a GoFundMe?
Scott Benner 31:53
I'll go tell the lady that runs the place. See if she's up for for oh, wait a minute. Sorry.
Melissa 31:59
Right. Okay, great. Yeah. So you know, you you are doing life with these people, but also sometimes, like, a self care this particular and everything's hard, right? Like, life is just hard. And I understand that. But this particular disease, for me, as the caretaker is like, the, you know, at the helm of the ship, it requires, okay, what do I needed to do on the back end to stay okay to be able to give him what he needs to be able to give the clients what they need. And for me, it's making sure like, I make it to the gym every single day. Like if I never lose another pound in my whole entire life. That's fine is just for the mental health clarity, diabetes hour. But what can I do to make sure I stay Okay, for my clients, for my kids and my family?
Scott Benner 32:39
Isn't it strange that when you work hard in life, you have these kinds of conversations? And you're just like, oh my god, like, I'm on the edge everyday. Like, I think most people are walking around just holding a murderous rage under the surface. You know what I mean? Like, just like, everything's wrong, like, you know, we always ask people, How are you? How are you? I think we should have a month where everybody answers honestly.
Melissa 32:59
Oh, my God, we were talking about this the other day, it's like, how are you? It's like, I don't Well, which answer is it? You're looking for? You just want me to say okay, because if that's if you want me to say okay, then I'm okay. But I have a whole plethora waiting. If you want me to unload. How
Scott Benner 33:13
are you? You should just change to I hope you're doing well. Because that's what you mean. That's what you mean? Yeah. Hey, I hope you're doing well. Because how are you is either like you said, like, you're gonna I'm gonna lie to you. Or I'm going to tell you a story that's going to, you know, shrink your balls to the size of reasons. And you didn't you just gotta walk around in a scared little huddle. That's a line from Julia Roberts movie. Which one? Notting Hill. Have you ever seen Notting Hill?
Melissa 33:41
I don't. I don't know if that's one I've seen. Alright, so
Scott Benner 33:44
you Grant's flatmate, look at me being British flatmate says something like, I'm going to tell you a story that will shrink your balls to the size of races that's always stuck in my head for like 20 years. I've never said on the podcast where I'm like, finally, get this one out. But you know, like, like, you're either gonna be horrified by my answer, or I'm gonna lie to you, or my life is going great. And somehow those people whose lives are so easy, their lives just become bad in a different way. Well, everybody
Melissa 34:10
has their thing, right? Like everybody, no one's getting out of this life unscathed. Right? And everyone has their thing. And I think when you say like, when someone says, How are you saying, I'm okay, well, for the most part, mostly, you just are okay. Like it might be it might feel terrible, but like you are okay.
Scott Benner 34:25
You really are. I mean, that's the other side of it is that this is like, and I think that's important. That's why I brought it up actually, like you You're, you're digging into my into how I'm thinking about this episode, but you are okay. Like, right, like that is the truth. Like, yeah, that all this stuff is going on. I don't know about my diabetes, and I don't understand this and I can't pay for that and blah, blah, blah, but every day you're up and it's happening. It's not it's not ideal, and it's not certainly how you would choose for it to be. But it also isn't a thing that you should run around. Just going like oh my god, Everything's ruined. You don't I mean, like it's just it's your You hear people say like, this is my new normal. I guess that is the best way to say it. Like, I'm okay. Like, I'm fine. I have cancer. I have a whiteboard in front of me that's just about my family's health. Ask about this for coal. See if this vitamin will help Arden, try this for Kelly, we need to get this test. There has to be a doctor's appointment here. I don't even see that anymore is like upsetting.
Melissa 35:22
It just is what it is 100% it just in my days
Scott Benner 35:24
go by very quickly, Melissa. So that's nice. I'm never bored.
Melissa 35:30
There's never there's no time to be bored.
Scott Benner 35:32
Oh, yeah. I don't understand when people are bored. I don't understand when people watch television. Like how do you do that? That's fantastic. Like I'm making somebody said to me the other day Oh, what was it? Called girlfriend was here for for Thanksgiving. And it was late one night? And she's like, Can we watch a movie? I really want to watch this movie. And she's like, sure she goes, Can we watch American Gangster like, is it Denzel Washington movie with Russell Crowe? And she's like, Yeah, I just saw this documentary about I want to see the movie now. So we put the movie on. And I'm watching my voice a good movie. And about a 45 minutes in your mic. I got damn. And I feel like I've seen this movie before. But I've never seen it. And then I realized, I want to put it on a monitor next to me while I was working on the website for the podcast. I have technically sat through the movie, but I've never sat and watched it. And like that's even how I get my entertainment. Like while I'm doing something else at so that I can make a podcast. And then you know, Melissa and I were talking before the show started. And before we started recording, and I told her, it's like it's such a weird thing to help people to know you're helping so many people, and yet still have to go online and get yelled at sometimes. And you're just like, I'm just trying to help. Like, that's like one of the things you want to tell people like while you're yelling at me, please remember that I don't even watch television with my eyes. Because I'm busy doing this for you. And somebody might hear that and go I'm not asking you to do it. And then fair enough, like but yeah, you know, like, okay, so like I don't, I'm not offended by it. I'm like, whatever, be mad at me. If you want to be mad at me or I don't care. I'm just going to take this thing. I'm going to put it out in the world. You
Melissa 37:12
can do whatever you want with it. Yep. And we're just going to do the best we can. Yeah,
Scott Benner 37:15
and we're all gonna do the best we can. But the truth is, you are I mean, listen, there are some people who are in obviously dire situations, and I'm certainly not lumping them in with everybody else. But for the most part, you are okay. Your life sometimes is just what you decide it is, if that makes sense. You know,
Melissa 37:32
and there are things that like, especially in the situations where we can control even if diabetes like diabetes is one of those things where I'm very type A I like right and wrong. I like here's this is black and white. So diabetes came in and I was like, Well, this is the best because it does not follow a lot of rules all the time. And what you've taught me is, you know what, it doesn't even matter why, like the why just doesn't matter. But we can have a situation come up and it's like, fine, but it's still okay, we can still adjust, we can make adjustments, we can do more insulin, we can treat a low, and it's still gonna be okay, we've been here before. We've seen this before. Obviously, if your kids get sick if they get stomach bugs and things take a turn that different. But for the most part, I've been here before it'll be okay.
Scott Benner 38:17
No, it's such a I mean, it is the thing I probably used to say on the podcast more than I do now. But yeah, sometimes they're your blood sugar is high. Like it would be great to know why. And long term, we do want to figure it out so that you can get ahead of it. But in the moment that people make themselves crazy sometimes trying to figure out what happened instead of trying to fix what happened. That makes sense. No, see, you get kind of Yeah, what does that they call that analysis of paralysis of analysis? Like, is that the same as the saying, I don't know a lot of things. But
Melissa 38:49
no, it's it. Yeah, it is. Because I get it when I go to like look things up. If I'm like, oh, I want to go here and I look it up and like five minutes and like I have no idea what just happened. I gotta shut this computer and move on. To come back. Yes,
Scott Benner 39:00
blood sugar's high. Let's Bolus, you know. Yeah, we'll figure out what happened later. I don't want you to ignore for the rest of your life, that the fat and your meal makes your blood sugar rise 90 minutes after you eat or something like that. But like in that moment, we want to get it down. I saw a person doing it online last night. Kids blood sugar's like, in the four hundreds, something obviously went wrong. I've changed the pump, and I Bolus again. And I'm like, okay, but it's not moving. So I said maybe you should inject some insulin. But I already Bolus to the pump. I was like, Yeah, but the blood sugar is 400. Like, right? Is there not a small amount of insulin you could use here just to test the idea of it. Maybe there's something wrong with your pump site, or, you know, Baba blah, whatever. And you could just see the person frozen. Even in writing that I don't know what to do now. And they sat and watched that blood sugar for hours. And
Melissa 39:51
it's funny that you should bring that up. I'm sorry, I didn't mean to interrupt you. Go go please. So you know, as I was saying about how we co parents, so Anthony He was with his dad last night. And it's hard because, again, intention matters my ex husband, there's no question about how much he cares about his children because well intended. But it's hard. You have to learn to kind of sit back and be like, okay, he has the same information that I have. And I've tried to tell him like, listen, of this mark, if we have pizza, here's where everything's going to start to get a little wonky. And we might have to hit it a little bit harder. And on those nights, where it's like, oh, he just had pizza, and you're watching from a different house, but you kind of can't say anything, because you've already said it. And he has to parent also and figure out how to navigate diabetes also on his home, and he has access to the same information that I have access to, it's a hard thing to watch, because, you know, he's frustrated, or Anthony is going to be frustrated that these things are happening. It's like, I think we already talked about this. And it's hard to co parent through those situations, like you're saying you're online. And you're like, Well, what about this? And you saw them freeze?
Scott Benner 40:59
Yeah, no, it's fascinating. I've done a number of interviews about this, I don't know that I've ever come to a helpful conclusion, the idea of the dissolution of a relationship, a marriage, that then has to come back together again, and then be decision makers together when like, let's be honest, like one of the main reasons why people do break up in a relationship is because they can't come to an agreement on anything. So now now you make it like, my wife and I are still married. And we had trouble agreeing about how to manage diabetes. When Arden was first diagnosed. I don't know what you're supposed to do. When you're watching that CGM. And somebody's somewhere else, and you think I know what to do. I know what I know it will help here. But that is not a person I can communicate that to. And at the same time, if I don't get my kids in this situation, is a must. It's like, feels like a probably an ultimate rock and a hard place.
Melissa 41:54
Oh, yeah. I mean, because if I speak to my husband, and he's somewhere with Anthony, and he doesn't do something, I will literally call him and be like, Are you new? Are you a tourist? What are you doing that you're not addressing? What's happening right now? And I can't call my ex husband and be like, Hi, what are we doing? And I can say the things to my husband that can't say it to my ex husband. Like, peace around the house?
Scott Benner 42:28
Are you know what's going on?
Melissa 42:31
Is this your first day? Do we not talk about diabetes all day every day? I mean, we don't you know, but ham, I'll be like, Oh, I tried to my husband. I've tried this, you know, new bowls and strategy. And so him and I are always talking back and forth. And my ex husband is very smart man. But he's somebody who here's a piece of information. And the first piece of information is the information we take on. So learning new information is harder, because he heard something in especially when we heard it from the hospital. So when we heard from the hospital, 15 carbs, 15 minutes. That's it. That's the piece he's holding on to rest of our life. We're doing that. Yeah, that's what we're doing. And so if I see an ad, blood sugar, and at home, I would be like everybody hold I don't know if it's fine. My ex husband's like 15 cards, 15 minutes. And then we're staring at 200 I'm shooting
Scott Benner 43:20
for ad like I don't know what everyone else is talking about. But again, you've just completely blown up my brain because now I realized that my wife is looking at me thinking, oh my god, you freaking idiot. But she's not saying it out loud. Because we're still together. Is that actually what's happening? Now,
Melissa 43:37
not for me, I tell my husband, he's a freaking idiot. Oh, like, I have an easy time doing that with him. Because also, my husband is like, my best friend. Right? So he's a safe place for me so I can unload on him and he can be like, I love you so much. He'll look at me and say I love you so much. Like I totally didn't deserve that. But okay, but he's like a safe place for me to like, you know,
Scott Benner 43:58
there's the thing that nobody tells you when you're getting married.
Melissa 44:02
That poor guy when we go into like, know how to go to the doctor and I'm like, Are you safe at home? I'm like prime and I'm fine. I would check on Billy but I'm fine.
Scott Benner 44:09
He's probably not safe and I'm doing great check on him. That poor guys hold on by a thread I am. Yeah. But it's okay. He loves me.
Melissa 44:23
Yeah, he just was like having anxiety and he's like, yeah, here come Lay it on me.
Scott Benner 44:28
No, I think people end up doing that for each other but there's lovely but yeah, that that bit about working in a you know, an annex situation. I don't know like there there have been some people who have come on who have swallowed like really hard and let it all go. And they actually describe that their life is better that they're not mad with their ex anymore, but they had to stop being mad to help the kid. But it don't you know what I mean? It almost help them. But that's the thing that if both people aren't on board, it's hard. Then you know one person is the punching bag and one person's the hand If only one person decides, I'm just gonna let this all go, but somebody has to write. Yeah,
Melissa 45:05
and I mean, I'm a child of divorce. So there are things that I was like unwilling to repeat with my children. But like, we will do birthday parties together, you will see pictures of just me and my ex husband and my kids, and he will see pictures of all six of us. Because I don't have that from growing up. And there are things that I just think make kids feel so much more secure. And so there is some things that like, I might swallow something, and I'm sure my husband has to do things that he doesn't love doing as it pertains to me or my ideas about something. But I do think, especially when it pertains to diabetes, there's always the helm of the ship. And there's always going to be one person at the forefront of somebody's care whether you're caring for an elderly person, whether you're caring for a sibling, there's always somebody that's, you know, doing just a little bit more research or whatever. So I am able to talk to him and say, you know, suggested the podcast hated this podcast episode, or I found this article, or, Hey, I tried this dosing strategy. And at least I know, I've said it, whether he is like, I don't want to talk to her today and doesn't take it in, at least I know, I said it, and a lot of most of the times he's available to hear it. And without any ego,
Scott Benner 46:14
being solid is such a big part of being a good parent. And, like just being solid and stable, and somebody that you can count on, to do the thing, that, you know, whatever the thing is, like, when your kids know, you're there, I think that's so big, that, you know, when they Yeah, when something happens, and they're like, That lady is going to take care of this, I know she will, like like, I just, I don't have to worry about that they handle that. I don't mean like, I don't mean you running around cleaning up after them or something like that, I mean, the big stuff, like, you know, like, sideways, I'm going to look up and you know, who's gonna be there, Mom's gonna be there. And, like, I know, that's gonna happen, I think that it creates a comfort in a human being while they're growing and maturing. That is, it's irreplaceable, as as, as a valuable ingredient in their life. So even just you reaching out to an axe and saying, Look, this is the thing you should know, maybe you're not going to respond to me or whatever, I don't care, I'm still doing the right thing in this situation. And the right thing is to give you this piece of information, like that's a really big deal, and very mature view.
Melissa 47:21
And I think it matters so much for them, for the kids, because then they also will not be as afraid to have certain communications and certain conversations, if they know that both parents are on the same page. You're
Scott Benner 47:35
also not I want to be clear, I'm not getting the vibe from you that your ex is some bad guy or anything like that. Like I don't get that at all.
Melissa 47:42
I mean, obviously, he's my ex for a reason, his ex for a reason. I don't think that both of us, you know, I don't think either one of us have a lot of bad things to say about each other. But I don't think that both of us know that the path that we're on now is better than probably it would have been if we stayed. So I don't I think that he's very happy in his marriage. I'm very happy in my marriage. And I think we're doing the best we can for our kids. I mean, I'm giving them just enough trauma to like keep them funny.
Scott Benner 48:13
Just enough Boston to make them decent people.
Melissa 48:19
So yeah, I think that we you know, we're definitely exes for a reason. But I, you know, one of the things that I would never question how much he cares about his children, things like that.
Scott Benner 48:29
No, it all sounds very, very good to me. Hey, just real quickly, I love that the Patriots suck. I just want to say that I don't
care if you like football or not, I just want to say out loud that I'm thrilled that they suck this season.
Melissa 48:49
Can I just tell you that when I was growing up, it was a terrible era for the Patriots. And I remember my dad, I think we're I think the total was like seven windshields because he would be driving and he would just like pop the windshield when they were screwing up, like spider cracks across the windshield. There was one time we were sitting in the living room, watching the Patriots and he was so mad. He ran up, pulled the cable box out of the wall sent it sailing to the living room outer closed window. So like How was your anger management as it pertains to the Patriots. I remember exactly where I was in 2001 when they I think I believe was two I think I was 21 when they won their first Super Bowl with Tom Brady. And then this dynasty is so amazing. And now if you I listen to sports radio every morning, if you could hear the way that they're talking, it's like it is unbelievable to hear how heartbroken how mad everybody is. It's like we're just walking around in like mourning because we lost Tom Brady and I don't know we are a disaster right now. Just a disaster.
Scott Benner 49:51
It's an interesting thing how a sports franchise can impact an entire city. It's really fascinating. Like I remember when the Phillies Were in the World Series rollin two years ago when they actually made it to the World Series, but the run up to it, the closer they got to being in the World Series. You could watch crime and Philadelphia fall.
Melissa 50:12
Isn't that crazy?
Scott Benner 50:14
People were just happier. They were happier and less likely to like take that murderous rage that I talked about earlier and go let it out somewhere they were letting it out through happiness through watching baseball on television.
Melissa 50:25
Fantastic. I'm always surprised at how quickly people turn. Oh, yeah, on their team, like, it is wild to me how quickly they turn they want this one fire. That one's gonna go in very quickly if they haven't very quickly.
Scott Benner 50:39
Yeah, that's the really something else. Like I just just wonderful. I don't know, I'm not an aficionado, obviously. Like, I don't know everything about football. But with a little bit of hindsight here, it just seems like it wasn't Bella check. It wasn't the system. It wasn't the Patriots. It was that guy like there was something about.
Melissa 50:58
I mean, I think it's easy to say like the coach is great when your players are great. I think that don't get me wrong. Like I don't want to get lambasted for saying I think Dobell attracts great. But I think the guy, it makes it easy when the guy is really great, too. Right? And
Scott Benner 51:13
a lot of the assistants went other places, and they're not doing well as head coaches either.
Melissa 51:16
Right? Right. And actually, my husband was going to the game this Sunday. And I was I was surprised that we're going to waste money on tickets for him to go this weekend tickets
Scott Benner 51:25
must be $8 at this point. Does anybody even want to go
Melissa 51:28
actually not that expensive? And I was like, Well, I guess if you're gonna if you're gonna go at least you're not going to spend like $15,000 before you've even left the house. Yeah. You know, anyway,
Scott Benner 51:36
my favorite patriots stories, really at the top one is you remember when the owner stopped to get a handy in Florida on his way to the Superbowl. Of all the stories that one's your favorite, absolute favorite. You got on a private jet, flew to Florida or massage parlor to get a hug and then went out the super. Did you just say to get a job? I did. Is that not appropriate? No,
Melissa 52:05
it was terrible.
Scott Benner 52:09
It was my favorite. That's my favorite is my favorite patriots story. Like,
Melissa 52:13
it's just like, could you not have figured out a way to be a little bit more discreet and not end up on the news? Like whatever?
Scott Benner 52:19
Yeah, if you're, if you're taking a jet, somebody's gonna notice I'm pretty sure. Why did he go to Florida but wasn't in Arizona? Like why did you go to Florida before he went out west? Like that's weird.
Melissa 52:31
That has to be a world class tug of war.
Scott Benner 52:34
You know what, Melissa, you're saying the truth here? Because you think that a wealthy man could find that at the Super Bowl? Because I mean, we all know Right? Like prostitutes won the Super Bowl cities the weekend of the Super Bowl. Like it's a major
Melissa 52:48
need. Everybody has to make their money. Right? Yeah, well,
Scott Benner 52:51
you go where the work is, is what I'm saying. But listen, if people stopped coming, your haircuts, you start going to them, I guarantee it.
Melissa 53:01
Like, I mean, like I said, Am I gonna have to start an only family? You know, we got to do what we got to do.
Scott Benner 53:08
Anyway, that was the news story. I'm not making that up. You can go Google it and look at the
Melissa 53:13
legit news story. We all hung our heads and thought you couldn't have figured out how to be more discreet about that. Also, he is married, right? I don't know if at the time if she has because he was married, and then she passed away. And I'm not sure of the timeline on that. And
Scott Benner 53:27
so I'm just trying to say that if I was married to a man that wealthy and even if I didn't want to talk to him anymore, I still think if he was like, hey, you know, I'd be like, All right. I do love my Mercedes. Like, come here.
Melissa 53:44
You know, when people say like, money won't make you happy? Can I try? Like, give it a try? And like, you know,
Scott Benner 53:51
I mean? Did they hate each other? Like were one of those gloves? Would you do the food prep? I don't know what to say I first of all, I've never I want to be honest. I've never done that for another man. So I don't know the implications. But I might be talking out of my trade now. I'm just saying like to be wealthy. I think I could do it is what I'm getting.
Melissa 54:12
I love when people say money won't solve my problems. I'm like, 99% of them.
Scott Benner 54:17
Let's try and see what happens. What is it? Did you know? Yeah, anyway, that took an odd turn. But I don't think really because you're from Boston. And honestly, this is how you want to be talking?
Melissa 54:28
No, not really. But my clients also note that I am like a wide open book. And I think in just in Boston were just built a little differently.
Scott Benner 54:35
No, I think there's a lot of similarities between Boston Philadelphia where I grew up to like, just the very like, I'm watching people, the better the Eagles get right now, the more people around the country are trashing the fans. But I'm here to tell you something. If you lived here, you would love it. You would think it was the it was the greatest thing like just nothing better. My example that would be that when Bryce Harper played baseball In Washington, I was like What an asshole. And like when what's his name went after him and choked him in the dugout. I was so like, oh my god that's hilarious what was like papel bomb? Do you do you know about this? Do you ever seen that video?
Melissa 55:15
It's ringing a bell but I can't say for sure that I know exactly
Scott Benner 55:18
Bryce Harper's a young kind of brash guy, he must have said something that made one of the crazy players out of his mind. The guy came down the steps that dugout leapt at him, put his hands around his neck and jack them up against the back of the dugout. And I was like Harper's getting his Bryce Harper plays in Philly right now. I'd go defend his home for him if he needed me to. It's so much. It's so much fun when they're on your side. Like that's, that was
Melissa 55:42
like deep rivalries, like the deep love that the people have for certain teams like New England. That way they love their patriots. 100% Yeah, they will defend everything for them until they start screwing up. Like you know, people think that our quarterback and doing a great job and now they're ready to like, you know, burn about the steak.
Scott Benner 56:00
In the end, you're you're getting out. I mean, listen life. I keep going back this year to something my son said to me, he's he was on his own for about six months, maybe when he called me one day very, super serious. And he said, I need to ask you a question. What do people do after work? And I found it to be such a sad thing. Because I was like, Oh, he's an adult now. Like, he doesn't have baseball to go to he doesn't have this. Like he's, he's like, he's like, what do people do? And when there's a whole world out there, beating their ass into the ground doing their job. And in you know, that's true, because I make a podcast. And it's incredibly difficult. And I have something to compare it to. I used to work in a sheetmetal shop and not for a day for a long time. I'm telling you, I'm not dirty, and I'm not hot. But this is difficult. And so everyone out there is doing something difficult, right? And they don't have enough money and their kids have diabetes or something else is going on or Jesus like, you know, how about they just got psoriasis all over them that God damn compatriots can't win. You know what I mean? Like, like, Yeah, and like that feeling. Like, everyone's got that going on. And then if you get a good sports team, you're like, there's a release here, at least, you know, like something I can do from the comfort of my home, that doesn't cost me money, I can flip the television on and watch some other people succeed for a while. And then when you get used to it, and then it goes the other way, it probably feels like those people, even though they're not the same players who were winning for you five years, there's a completely different group of people. And when it starts going the wrong way you feel, I guess it comes off, like anger. But I just think it's this, it's a sadness that you don't have that release anymore.
Melissa 57:41
And we just got so used to it. Like, it was just one of those things that you just get used to, and when you can get used to winning in any regard, right, like, and then something happens in your life. We were winners. Like, we just got used to it. Like, of course, we're going to civil Of course, we're going to win a ring. And I think that like you said it was such a relief for people, people were feeling very happy they were getting together and celebrating this thing that wasn't heavy for anybody.
Scott Benner 58:07
No, I listen, if this podcast were ever fall apart, I already know which wall I'm running my head through in this room. So like, Don't worry, like. Because imagine, like, if I lose my job, I don't just lose the job. I lose the way I'm valuable in the world, which I guess also is for most people's jobs. But then I have to make a big shift. And I've been out of like real work, which I'm making with air quotes. But I think I mean, like I've been out of real work for so long. Like, what am I going to go back into the world and go Hi, what do you been doing for the last 10 years? Well, for the last 10 years, I was a podcaster. But before that I wrote a blog. There'll be like, Oh, we can't wait to hire you. Like what am I? Can I just sit in the coffee room and talk people will be so entertained? Yeah, great. That's not a job here. Get the like, like, so. How am I getting another job? I gotta learn to cut somebody's got damn hair. Like, you know,
Melissa 59:00
yeah, but then even like, if I am I gonna go work for somebody at this point in the game? Like, am I gonna go walk into a salon and be like, Oh, sure, you can tell me how to do my job and how to book people. And when I need to be like, No, thanks.
Scott Benner 59:13
Mostly. When I was a kid. I worked in the 711 for a year I've ever talked about in the podcast. I worked at 711 for a year. I don't think I've ever heard you mentioned seven. I don't think I have like Yeah, so the long the short, long story is, I was really young. Oh my god. My kids are gonna listen this when I was really young, and I had a girlfriend who love to have sex. I mean, we've been pretty like clear in this episode. She likes to bang one out in the afternoon before she went to her job, just what she enjoyed doing okay. And so I literally switched my job so that I could be available at 3am
Melissa 59:47
priority. Scott, you had priority. I worked
Scott Benner 59:52
in a king 711 for a year because they had a seven to three shift and I could have six with this lovely girl
Melissa 20:00:00
Every day of 3010 My
Scott Benner 20:00:02
God is the best year of my life. I just want to say that out loud right now for anyone. I mean, if my kids are listening, I apologize to you. You're probably thinking, what about my birth or when I graduated? The year I got to have sex every day at four o'clock in the afternoon was the best year of my life.
Melissa 20:00:18
And didn't have like real people's problems. Oh, my God. I had enough
Scott Benner 20:00:21
money even though I didn't make any money. Yeah, I had all the security in the world about where I was gonna live and what I was going to eat and everything. And every day there was sex. It was like, it was the greatest thing. Anyway, I had to work in this 711 from seven to like, it was a terrible job. Why did I start telling this story?
Melissa 20:00:41
Because I said, I don't ever want to work.
Scott Benner 20:00:43
Good, by the way. Yes, I have I've a relation to that. After I worked at that 711. And our relationship right now, believe it or not, we didn't have a ton in common. And after that relationship, we didn't get out much. So like after we after that relationship ran its course I went did another job for a while it was a seasonal job. And when that fell apart, I tried to go to a different 711 Because I thought, Oh, I'll be able to walk in and grab this job real quick. I know how to do this. And then I'll I'll keep this job while I'm looking for like the next thing I want to do. Except just working at a different 711 was so different that I couldn't do it. It was maddening. Like all the routines were different. And the expectations were different. And you would think it's a seven love and you do it here. You do it there. It was completely different to me. Yeah, then that was my point. I actually ended up adding myself on my story about that, to tell you that I've gone from one place to another you really went like all the way through it. Yeah, it's such a lovely warm remembrance when it came up in my head. She's a lovely girl. I'm sure she would be horrified if she's not gonna say her name, obviously. Yeah, that's what yeah. But I what she was really lovely. And, and I did really enjoy my time with her. And if I'm being clear, I want to say I did love her very much. And I'm sure she didn't like me at all. But that's not the point. So
Melissa 20:02:02
I think she liked you at least a little bit. A little bit. That went on for that long. Yeah.
Scott Benner 20:02:06
Also, I don't enjoy seeing a little bit, let's say, let's say more than an average bit. She liked me. Okay, well, let's but not an amazing bit, just more than
Melissa 20:02:20
anyway, saying she liked you enough probably isn't
Scott Benner 20:02:24
awkward enough that she seemed happy? Yes. Perfect. Yeah, that's all. Okay, we're done. Let's get past this. Is there anything we haven't talked about that we should have? I can't imagine if there was,
Melissa 20:02:34
I think we've covered a lot. I just, yeah, I wanted to make sure to talk about, you know, just, it's, it's a lot. And I think, especially as it pertains to work, it's just, everyone's just doing the best they can. And I'm very thankful for my situation that I'm in because, again, if I worked for somebody else, I don't know how easy it would be like pop earplugs in and, you know, check in on what you're doing on the podcast to see if I'm missing anything or check on Anthony. And I have alarms going off in the background. And I mean, all to say he's doing awesome. And I wouldn't have it any other way. Right? Like he had him and my family and everything needs to come first. And, you know, I'm so thankful for what you do and the value that you bring to my family because it's a one sees great. And now we don't have a lot of panic. When we're doing things. We're like, Oh, we've seen this before. We don't run around with our hair caught on fire. And I'm just super thankful that if he had to get diabetes, we bought it at this point in time.
Scott Benner 20:03:31
I was very nice. I just say about about what I'm doing. And I think it's a great perspective that you have actually but can I ask you what is it? I do? Do I just effortlessly weave good information about diabetes around stories about having sex as a young as a as a 19 year old?
Melissa 20:03:46
You took the words right out of my mouth, because that is the way I would have so eloquently put it.
Scott Benner 20:03:53
Honestly, there's times I'm like, I don't even know what I'm doing. Like why? Listen, this is not me blowing Oh, a horn for myself or anything like that. But I am Ultra aware of the podcasting space, like I pay attention to it in a way that may be unhealthy.
Melissa 20:04:08
So let me tell you, let me tell you what it is because I happened upon your podcast in the hospital on like, day two, I just was sitting there and he was sleeping. And I was like, I don't know anything about diabetes, like I don't even know where to start. And when they came in, and they dosed him with insulin, and they were telling us he was gonna start to give himself injection. And I said, Okay, you know, they give you the hospital menu, and it has all the carb counts and ethics figured out. We have to do the math equation. And they said, they will do this 20 minutes before he eats and I looked at them and I said, I do not understand. Because what if he doesn't eat everything on his plate? Wouldn't it make more sense to dose him after? Now understand where in the children's floor of the hospital, I have endocrine coming in and out. I have all the nutrition coming in and out. Nobody's said to me, it takes about X amount of time. I'm too insulin to come online. So here I am asking it's a very specific question. Why wouldn't it make more sense to do it after what I know what he's eating? And they said, Yeah, you can do that. But you should do it this way. Nobody told me the why. So your podcast so valuable, because you're telling me somebody who's very black and white, very type A, the why. So I can make it make sense in my brain, here's what we need to do, we're eating this food is going to hit like that we need to Pre-Bolus like this. And that is even as I we went to the doctor, you know, we go every three months. And once a year, we do diabetes clinic. And we're in clinic for like three hours. So his last appointment was actually November 15. And we went in and the nurse practitioner, and I like everybody in the practice, I really do. But the nurse practitioner said to me, Hey, you had diabetes clinic in August? Do you like it? And I'm one of those people that I believe you can say anything to anybody if you're respectful, right? Like if you're not an asshole, you can say whatever you need to say. And he said, I'm gonna be honest with you. I don't appreciate diabetes, Manik and she said, why? And I said, Well, for us specifically, because we always hear you are our star patient, you don't need to worry so much. And I love that they see me that way. But I don't appreciate it. Because I had to go get this information somewhere else. And it doesn't mean that I'm okay with this 250 blood sugar that I'm seeing. And I'm trying to get ratios, right. And if they say to me, you're a start patient, don't worry about it so much. That's neither here nor there. To me, that makes me feel sad for other patients, that they don't have the information or the education or whatever. So I said to her don't appreciate diabetes clinic because nutrition comes in. And they say to me, you know, whatever. They're saying to me about food. And if I ask them a specific insulin dosing strategy for a specific food, and they look at me and say, I don't know, you've wasted my time. I don't like if I have a specific question that you consistently cannot answer. I don't want us to sit here for three hours. Psychology comes in, I think psychology is super important. We saw somebody right after diagnosis, that was not a good fit for him. And we said, this woman is not a good fit for him. She was perfectly lovely. She just wasn't a good fit for Anthony. They and the practice that Nope, we think that they are the best fit. So why do I have to do this thing, if you're gonna make me do it when you won't meet my needs. So what you were able to do is give me number one, the information that I was searching for, that nobody else seems to be able to give me. Because this is not my body, right? So I can't go experimenting with insulin, because it's not my body, I need to be respectful of him, I don't know what's going to happen. He's not always with me. So you were able to give me the confidence to be able to do the things that I need to do to keep them healthy, I need to be able to set him up. So that when he is a grown up and says me, I don't want to borrow my numbers, or I'm not with him all the time, that he has the confidence to move forward. And that is something that we weren't ever going to be able to get just from the practice, I understand I could hire a CDE I could hire someone like Jenny, who I am obsessed with. I love her so much. But that's what you do. That's what you're able to do for people and it is invaluable. I
Scott Benner 20:08:02
appreciate you. Honestly, I honestly appreciate you sharing that with me, because I know I've said it before, but I'm almost the last person who understands exactly what is happening. Like, I'm just being myself and I have this information. And do you really mean like somebody didn't sit down and say do this, then say this and be like that, and then this lady will have that experience? I'm just doing the thing, and it happened to work out? I mean, it genuinely. And what I was gonna say earlier was that when you look at what is popular in podcasting, especially around health, when you look at what's popular in podcasting, around health, what you see mostly is like the bro science stuff, you know, like stuff that may help but like, who really knows if it's, you know, does getting in a freezing cold bathtub, make your life better? Like I don't know, but it's a very popular thing to talk about right now. And if you talk about that, on your podcast, you will have a popular podcast, if you you know, double down on like ketogenic diets, you'll have a popular podcast, if you take a position on a certain, you know, like thing you'll have, you'll have a popular podcast, but the idea of talking about diabetes, there are other people doing it. And not just podcasting, but also blogs, Instagram influencers, tick tock, there's like all these, like, every, let's be honest, people are trying to be internet famous with the thing they have, right. And there are some there are also people trying to help like I'm not discounting that. But there's a lot of people out there trying to make a living off of whatever this is. And it doesn't work. Only for this show. That's the only one who like I'm consistently in the top 20 in the Apple podcast medicine chart for like four and a half or five years now. I know you're not a podcaster but that's insane. Like it's absolutely insane. It's a niche idea. That's like when I pull up the top 10 You know, right, I'm looking at the top 10 Right now if I said Peter, a TIA to you. Do you know who that is? No, no, because you care about diabetes, but trust me, right. A lot of people were into podcasts we go, I know Peter to you. If I said Dr. Mike Heyman, you'd go, I know Dr. Mark Heyman. Does anyone know Rhonda Patrick? People love her. How do they know her? She had this podcast. She went on Joe Rogan's podcast, he made her super huge. She has been in the top five in my category for years since she was on Rogan. Like, there are millions of people listening to these podcasts. Paul Saladino, doubles down on I think carnivore diet, he stays in the top 10 doing that RFK does the the way he's coming. What's his perspective about like, you know, questioning vaccines, he stays in that high space all the time. That's the kind of like hot button stuff you have to do to have a top 10 podcast, unless you're me talking about type one diabetes. And when you work at 711. For some reason that mix works, like like the ADEA has a podcast. It does not do well. I would guarantee I mean, listen, I've never heard it, I genuinely I want to I have my right hand raised like I'm in court. I've never heard the ADA is podcast, okay. But I bet you it's got good information in it. But nobody listens to it. I think one of the biggest mistakes people make in the diabetes space, is they just sit back and go, we're delivering good information. People should get it, they'll come get it. That's not how it works.
Melissa 20:11:28
I also think for us specifically, how you structure the podcast, you know, you have the Pro Tip series, and then you have all the other specific Informational Series. But the conversations one of the things I think that is really lacking in type one diabetes is community. And the Facebook page is the best. But in real life, you don't have this community. So like, my family will say to me, how is Anthony? And it depends on the day, some days, I want to be like his Basal rates were off and this and that, and this and that. And all they wanted to hear was good. Yeah. You know, like, they don't, of course, don't want anything wrong with him. But they're not looking for me to because it's not something that they've had to know about. You don't know about diabetes. And so you have to know about diabetes. So when these conversations in this space, I may not be able to talk back. I mean, I do in my car, especially like when I'm hearing I'm like, oh, yeah, totally no, we talk about it provides a sense of community that people can listen to people share their stories, and not just online because we all know in a Facebook group, like I posted something recently about cheese sticks, my son fell out of honeymoon in like a moment. And he would eat like three cheese sticks, which were typically like a no insulin snack. And hours later, he would be high. And I couldn't figure out why. And all of a sudden, it hit me like a freight train, like it was the chief stick. He's havin three chiefs at a time. And you know, I posted it on the Facebook page. And if somebody you know, somebody was like, You need to allow him to have cheese sticks. And that's not necessarily the community I'm you know that when you're in this space, you're just looking for someone to share with and understand where you're coming from. And I think it's hard online, but it's something easier about hearing people's voices than hearing them be vulnerable on the podcast and laugh with you. And so you do get that sense of community that we, you know, you you might see like I like when people say like a tea one day in the wild. And I've we might get that but there isn't that big sense of community in day to day normal life. So these conversations are so important, because even if, today we've talked about like a million different things, but if there's one thing that we've talked about, and someone's like I that resonates with me, and that was helpful to me that that sort of makes you feel so much better. Yeah, within your community.
Scott Benner 20:13:42
Listen, I'm gonna give up my secret on this, which I've said on the podcast over and over again, you have to allow people to communicate openly and be themselves and not stifle people because they say something that you're worried someone else is going to be uncomfortable with. And it doesn't hurt that I'm this way on the podcast, and this is how I am and so I'm like that in the Facebook group too. And so people who listen to the podcast and make the the Facebook group are also communicative open people, like honest so that when somebody comes in and tries to shut you down or shame you for saying something that they think, you know, is not politically correct, or whatever I know, by the way, woke means politically correct, right? Isn't it the same thing, and so like, keep changing the words I'm old, I need to be able to keep up. But to give you an A to give you an example. Two days ago in the Facebook group, someone posted a picture of their kid with a deer they just shot like you know when hunters like yeah, kill something and they take a picture with it right? And I'm not a hunter. I've never shot a gun. By the way my wife asked me what I want for Christmas and I was like I might want like range lessons I can maybe I'd like to learn to shoot a gun like in a controlled anyway. I've never shot a gun. I've never held a gun. I've never gone hunting. If you asked me to kill something so that I could eat I probably could do it but I wouldn't do it with a lot of disaster gusto This is my position on this But I don't take down this this person's excited. Like in their world, hunting is a big deal. And they're proud of their kid. And people started reporting that post like not a lot, because I've cultivated a space where everybody's safe, right? But, but I got four or five people reporting the posts. And, and then finally someone posted in there and said, You know, I don't need to see this person like like I don't. And I just I deleted their comment and I sent them a note and I said be nice. This person is very proud of their child, you might not be into hunting, they are, let it go. When one of my moderators asked me, What do you think of the hunting posts? I said, in my mind, that's no different than someone's kid holding a soccer trophy. Like, you know what I mean? Like, they're just like, look, my kid did a thing. Like it's a thing we've been working on for a long time. It's a thing that our family thinks is important, and I'm proud. Do I know there are going to be some people who complain about this? I do. But I don't care. Like, it's not that I don't care that you're upset about it. My My position is, don't look at it.
Melissa 20:16:00
Yeah, you could, you could, and I know, it's like a hard concept. You could just keep scrolling. You could just say, this doesn't interest me, I don't need to look at it. And I can just move about my day.
Scott Benner 20:16:12
Again. Now, I could use more buzzwords like this and have a more popular podcast. But it's virtue signaling, it's you wanting to make sure that the whole world understands that you think this is wrong, and you're on the right side of it. And so like, take it out of the hunting thing for a minute and go into simpler things. That doesn't exist in my space. And if it does, we take care of it immediately. And not privately, you will like I will respond to somebody and say, Look, I don't know what's going on here. But we're not going to talk to people like that, like and we're not going to DM each other and be private about it. You said something crappy, take it back, or live in the honesty of what happened here. Like you're getting called out for this. And it's not mean or cruel. It's actually done very kindly. But it's, it's about like expression and open communication and allowing everybody to be who they are. And at its core saying like, we all have this thing in common, like we're, you know, you there's diabetes in your family. They that's it and I don't care type one, or type two, or lot or doesn't matter to me, like you have diabetes, or you love someone with diabetes, or you're supporting somebody with diabetes, you're welcome in that space. We're not going to be all woke, we're not going to delete things, because we don't like when people say stuff that makes us uncomfortable. Like, we're also not gonna let people make other people uncomfortable on purpose. Like it's an easy balance. If you just apply common sense to it while you're looking at it, instead of being worried all the time that someone's going to cancel you or like you can't get canceled. You live in Iowa. You know what I mean? Like, you're you're just you're okay, you're posting online about something. It's your kids, whatever, like, don't worry, you're not, you're not famous. And by the way, yeah, go ahead. I'm sorry. I
Melissa 20:17:54
also think that diabetes is, is hard. And it's a lot and it's like, even from Anthony's diagnosis story, like, I still get very emotional. And so I also think that were people in your life don't know as much as you do, right? Because, again, you don't know what you don't know. But you get to have people when you're in the Facebook group, most people are well intentioned. And it's like other people rooting for you. They want you to know, if I say, Anthony is anyone see, you know, he was like, almost 14 at diagnosis, or you've been consistently between like, five, eight and six, one, like, my BM is like, that's great, but they don't know. And so it's really other people getting to cheer you on, which is just so valuable, because not that you need validation from other people. But this diabetes, what we know about diabetes is what I forget the statistic, but diabetics have to make, like X amount more decisions a day than everybody else. And it's just somebody else who knows what you're going through and is able to cheer you on in the background. I'll
Scott Benner 20:18:49
tell you what, it's another little thing that I was way out ahead of that I can look back in hindsight and tell you I was 100% correct about that. Because because the like celebrating success. I mean, I've been in this space a long time. So back when I was blogging, it was frowned upon, like it was looked at as rubbing it in people's faces that you're doing better than them. I never once saw somebody rubbing something in someone's face. I'm like, that's not what they're doing. That's how you're choosing to take it. And so when people succeed in my Facebook group, I'm like, tell us, like, you know, you want to put your agency up there your time and range or you want to show us a great Bolus that worked out for you. Like do that because other people either can, you know, it sprouts a conversation where people can learn what you did. Or by the way, I think most importantly, it expresses hope. Like so if you're doing poorly, you can look up and go, there's some lady from Minnesota figured this out by listening to a stupid podcast like maybe I'll go listen to that podcast, maybe all figured out like maybe I'll be hopeful instead of just like, oh gosh, this is never gonna go my way. Don't rub it in. No one's rubbing it in, you know how they feel. They're elated that they Got that something right? And that they might be on to something. And
Melissa 20:20:03
they have to go somewhere where they can be celebrated within their community on top of the fact that I think what you just said is really important. Like, what's that saying? Like there's more than one way to skin a cat. And so when you see the comments, you're like, Well, I've tried this. And I've tried that maybe not everything is for everybody in every situation. So if I see things online, oh, I need to make a mental note of that. So when we do this thing, this person had great success this way. Yeah, I think it's important to have those resources because you can read all the books you want. But when things are happening in real time, I think it's helpful to be part of Yeah,
Scott Benner 20:20:36
and by the way, did you say there's more than one way to skin a cat because we were talking about hunting earlier? Was that attached to that?
Melissa 20:20:42
Well, no, I mean, that fits well.
Scott Benner 20:20:46
You don't know anybody shooting animals in Boston, there shouldn't?
Melissa 20:20:48
Oh, no, I do actually do that. Because this past Saturday, I went to new friend's house. She's a volleyball mom for my daughter's volleyball team. And we went over there to put the gifts for the banquet together, and I opened the door. She's like, Listen, I have a lot of taxidermy on my wall. You freaked out. I'm like, No, it's fine. And she had taxidermy all over the walls that our husband had hunted and killed just
Scott Benner 20:21:10
rats from the city or that he goes into the woods.
Melissa 20:21:14
Matthew, where the Boston rats? No, I think he had like a black bear. I think he had all kinds of stuff. That's
Scott Benner 20:21:21
very, very gunner. No guy that's braver than I did. In the end, the whole thing works. And it works. Because it's authentic. It works. Because I don't sit around worrying. If somebody's going to not like it, like Trust Me, I'm gonna get an email saying, you shouldn't have said you and your girlfriend. She liked to bang one out after he was a freshman in college. But, but like, you don't mean like, I'm gonna get a note that says, you shouldn't have said you and your girlfriend like to bang one out when she was done with school. Like I'm somebody's gonna say that someone's gonna call me a misogynist, trust me, I'm gonna get like you don't love women. Like I'm gonna get all that kind of like, fringe opinion, does that make sense? Like whether it's like, far right or far left, like fringe opinions, like people were like, their virtue signaling, they want to let you know, they know the way the world is supposed to go, and you're doing it wrong. I get notes all the time, that would freak you out. Not one of them stops me from saying, I know that the podcast and the way I make it helps people live better with their diabetes. So I'm gonna keep doing that. Like, that's, that's it. I'm just gonna keep doing that. When COVID started. As an example, when COVID started, there was this new story. I don't remember the details of, but it was out of like Sweden maybe. And I thought it was interesting. And I think I just posted it somewhere. I was like, this is interesting. And, and I don't know anything about it. I just thought maybe people would find interesting, I genuinely don't even remember what it was about. I'm being 100% Honest. Well, like a day later, on some social media platform. This guy's literally trying to cancel me. He's like this podcast, you shouldn't listen to it anymore. This guy's like, I forget what he said I was doing. And I was like, I'm like, Dude, I'm just like, when I looked at it, I thought, I'm just sharing this news article, like, do whatever you want with it. Like, I don't give a crap. But I had gone against his orthodoxy. And because of that, he was now going to try to ruin my life and ruin this podcast. He didn't care how many people the podcast helped. That wasn't important anymore. He was out there trying to show everybody how virtuous he was. And you know what I did? Nothing. I didn't do a goddamn thing. I didn't reach out to him. I didn't try to explain myself. I didn't get upset. I didn't run around wringing my hands going, like, Oh, God, it's over. I just said, this is meaningless. This person's wrong. And I'm not going to engage with them. And it all went away in the day. But it was his intention. You know,
Melissa 20:23:44
it's almost unfathomable to me because it just doesn't match my 16 year old says it's just not that deep. Like she says to me all the time. Just Mama's just not that deep. Like, I can't imagine my world, on any given moment is like a dumpster fire at best. I cannot imagine focusing so much on what someone else does, if they have a different opinion. Or say something I don't like. I can't imagine doing anything other than moving on. Yeah,
Scott Benner 20:24:11
I don't get how everybody wants to have a hot take about things that are so complicated that they don't understand them, and nobody else does. hyzer like that, that's always and if you don't agree with their hot take, then you're a bad person, you're trying to ruin the world, or vice versa. I had somebody reach out to me recently and wanted me to do an episode about the, you know, the current conflict in between Israel. And I guess, am I saying this right. Is it between Israel and Hamas? I'm not even sure yes. I don't understand that. I don't understand it enough to speak well on it. But all I could think was, so you want me to take my diabetes podcast that helps everyone with diabetes and alienate half of the people listening so that they leave and don't get help with their diabetes anymore so that I can share your opinion about what's happening overseas. A place where you're not at and don't know anything about. I'm like, Yeah, we
Melissa 20:25:03
know, immediately can't even consent like, what are people thinking? Like? Does he not want you to be successful? So
Scott Benner 20:25:11
I don't have an opinion about it because I've never been there. I can't live there. I'm not Palestinian, I'm not Israeli. I don't know anybody who is you want me involved in this? I was like, it's a diabetes podcast. Like why in God's name? Would I be involved in this? And so you know, what ended up happening is now that person's mad at me. People are always mad at me, Melissa, I ever saying that I that I share with Isabel all the time. And she's the only person I've ever said this to. So now I'm saying it to everybody. I say don't worry, eventually, in the end, I'll be the bad guy. Everyone's gonna blame me on the last day. It's just the position you're in by doing this thing. And again, I wish that wasn't the case. It breaks my heart when people get mad at something else and decide I'm the one who did it to them. Because I'm a voice in their headphones, then I they I feel famous to them. I'm not famous, like, Do you know what I mean? Like, I'm not important. I don't, I'm no more important than anybody else. But eventually, they'll focus on me and decide that I'm finding the problem. And it doesn't happen a lot. But when it happens, it's I find it tragic, because like, Oh, God, like, Are you this lost, I'm a disembodied voice in your ears. Like, I'm not really a part of your life, you know, like, I'm not impacting you. But some people are, you know, unstable to some degree and are really struggling. And that happens. But again, when that happens, I have a lot of compassion for it. But big picture of the podcast helps a lot of people don't waver I stay course, you know, so and I think
Melissa 20:26:51
that that's super important. And the tragedy is like they're they need, they need more help than what you could even offer
Scott Benner 20:26:57
I've tried, it's a number of times, I've been successful with some people, and but most of the time, it just, I just end up being the bad guy.
Melissa 20:27:06
And eventually, we did all we did cell phones, because you're going to attract the people, like all the other people in the community, from the Facebook group and the podcast, and it's just gonna weed itself out. It's just unfortunate that you're like taking shrapnel dealing with it. If you do
Scott Benner 20:27:21
what I do, and you want to be successful at it and actually help people, then the phrase, I can't help everybody has to be part of how you think about this, like, I'm going to do my best to help everybody, I'm not going to intersect well, with some people, those people are going to go the wrong way. And this is not my failing. And it's certainly not an indication of who they are. It's just we're not a good fit, like you talked about with a therapist or with your ex husband or anything like that. We're just not a good fit together.
Melissa 20:27:48
And we always learned that you cannot be all things to all people. Yeah, no, no, sometimes it just doesn't work out.
Scott Benner 20:27:55
I tried in the beginning, it made me crazy. So like, and by try to I mean, it was my intention. But that's where all the like the strife online comes from the end. By the way, it's where you get milquetoast content from, I'm not going to call anybody out, but from a large portion of this space, is that what you're doing is really well intended, sometimes very well educated people are trying to be liked by everyone. When you make yourself that boring, or milk toast is the right word. I just don't know if people know it. Like when you make yourself that bland so that nobody can have a problem with you, then you are not going to be able to properly deliver content to people in a way that's valuable to them. Like you know, when, you know, when you flip through tick tock or Instagram, and somebody pops up in front of you. And they're like, Hi, I have great advice for how to exercise with diet, like Did they just realize that people can't flick away from that fast and
Melissa 20:28:52
fast and don't screw up my algorithm? I gotta get rid of them. And by
Scott Benner 20:28:56
the way, who knows what they were gonna say next, probably really terrific advice. But you seem like a fake person when you're doing that, you know, like, and you don't just seem fake to, you know, very conservative people you don't just seem can speak to very like liberal people, you don't seem fake, you seem fake to everybody, because you are being fake, because you're not being yourself. You're trying to be palatable to everyone that doesn't work. So
Melissa 20:29:22
and I think that that's a really, you know, important part of the podcast in the conversations that you have with I'm gonna say random because I'm a random person on the Facebook portal. It's like a random person like me is that everybody's been there. You're giving them space to be their authentic self, so that they maybe have something in common with someone else is going to hear them and think, Oh, I needed that.
Scott Benner 20:29:44
Yeah, we need to hear everybody's perspective. Like everybody's and anyway, you're terrific. We've established I'm fantastic. Obviously. I'm going to I'm calling this episode juicy jaw. I just want to remind everybody it's about the thing, Melissa I said not about the thing I said about 711. Okay, so and
Melissa 20:30:03
I will say now when you get that feeling and something is like either grosses you out like I can't do blood, I can't do this. I don't have any of that. And if you feel the kind of way and you realize that your back molars are starting to water, you're gonna be like, that's juicy, John. That's what that is.
Scott Benner 20:30:17
Thank you so much Bolus, I appreciate it. Thank you, Scott. Oh, my pleasure. Hold on one second, I
want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast and invite you to go to ever said cgm.com/juicebox. To learn more about this terrific device, you can head over now and just absorb everything that the website has to offer. And that way you'll know if ever sense feels right for you. Ever since cgm.com/juicebox. Mark is an incredible example of what so many experience living with diabetes. You show up for yourself and others every day, never letting diabetes to find you. And that is what the Medtronic champion community is all about. Each of us is strong, and together we're even stronger. To hear more stories from the Medtronic champion community where to share your own story. Visit Medtronic diabetes.com/juice box. A huge thank you to one of today's sponsors, GE voc glucagon, find out more about Chivo Capo pen at G voc glucagon.com. Ford slash juicebox. you spell that GVOKEGLUC AG o n.com Ford slash juicebox. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com
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#1243 DIY Insulin Algorithm - iAPS
Episode 1243: Advanced Diabetes Management Techniques with Deniz
In this episode, Deniz discusses the benefits of advanced diabetes management techniques, including the use of algorithms and loop systems. Discover how technology can help you manage insulin doses more effectively and simplify your diabetes care. Deniz also touches on the psychological aspects of diabetes management and the importance of having a supportive community. Listen to learn more about these cutting-edge strategies and their real-world applications.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends welcome to episode 1243 of the Juicebox Podcast
today I'll be speaking with Dan he is 31 years old from Germany he's had type one diabetes for 27 years, did a lot of MDI actually for 25 years but he's recently got a pump and become very active in the do it yourself community. We're gonna get to know Dan and then the second half of the episode is pretty specifically about Iaps which is a do it yourself algorithm. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Hey, everyone, I need you t one D exchange.org/juicebox. Head over join the registry complete the survey should take you about 10 minutes. They're looking for type ones, and caregivers of type ones who are US residents to complete this survey. When you complete the survey, it helps type one diabetes research significantly. I can't stress enough that your time will be well spent at T one D exchange.org/juicebox. completing that survey simple survey you'll know the answers no stress. If you have a chance to check out the private Facebook group Juicebox Podcast type one diabetes on Facebook today's episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. Check them out on Facebook, Instagram, and go to touch by type one.org to learn everything about what they're doing, including their big event coming up. This September in Orlando absolutely free to attend. I'll be there Jenny will be there go get your tickets now touched by type one.org. This episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next one.com/juicebox. Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it too. So screen it like you mean it. One blood test can spot type one diabetes early tap now talk to a doctor or visit screened for type one.com. For more info. This episode of The Juicebox Podcast is sponsored by screen for type one.com. Guys, I'm going to read you something. At the time of this recording. Dennis was working on Iaps. But shortly after he moved his focus to trio, which is a new version of the Iaps app that's been started by a number of former Iaps contributors. TRiO is currently in an open beta. But keep your ears peeled for a future episode about trio once the app is officially released.
Deniz 2:58
Hi, my name is Dennis. I usually go by then I'm 31 years old. I'm from Germany. I've been diagnosed with diabetes type one in 1987 which should make it 27 years of type one I think now for the better part of my life. I've been on MDI, actually 25 years. I've gotten like very, very lately into like tech and you know, the whole CGM pumping, you know, IID EPs and stuff. So, yeah,
Scott Benner 3:27
wow, you got diagnosed when you were how old? Like, four,
Deniz 3:32
I was of five by five close to turning six a year after
Scott Benner 3:36
I got married, which just made me feel very old. How long have I been married? I've been married 27 years. Yeah,
Deniz 3:43
more than more than like, a quarter of a century. Man. That's a
Scott Benner 3:47
long time. Okay. Okay, so you're diagnosed at five? You're 31. Now you did MDI for the first 25 years?
Deniz 3:54
Yes, I've just gotten a pump. Last year. Actually. I've got my first CGM in 2019. Okay, which is quite funny. Because I'm actually super into tech, I was always into computers and gaming and stuff. I'm, I'm a, I'm a software developer by a career choice. And I actually got a degree in computer science and a postcard in computer science. So it's, it's kind of weird that I've not stepped into the old tech stuff around diabetes earlier. But for some reason, I was just, it was working. And my endo was is like, who's also type one, by the way, it was just like, you know, what, why do I change the car? When is it running perfectly fine, you know, just like, Dr. And so I've been on it for a long
Scott Benner 4:33
time. I'm always interested when people say things like, it's going great. Or it was working or I love my doctor, what what does that was working mean? What were your outcomes? Like?
Deniz 4:41
Not gonna lie when I was a teenager, you know, I had the whole rebellious phase. So they were like, some really, one high a one season there, and, like, just above 10 1011, right. But I had a very, very bad decay when I was I think 19 Or yeah, I think 19 And that basically really You know, make me get my together. Yeah. And so after that I've been in like the low 60s on MDI. Even with just fingerprints actually, I started to work out a lot. I started, you know, watching what I eat and watching my diet, basically. And then I got a CGM in 2019, which was pretty late. And while on that CGM, it was even below sixes. Like it was just between like 5864. Right? It was like ranging in between that on MDI and just just the CGM. So I switched to basically a pump because of something we're probably going to get into later. But yeah, let's let's concentrate on them. Yeah, but
Scott Benner 5:38
so like those first 14 years. So up until the dka, basically, you were, what were you always bolusing kind of bolusing sometimes Bolus, like how to like what did that look like, like skipping meals once in a while always taking your basil but not covering foods, that kind of stuff.
Deniz 5:57
So basically, I was I was diagnosed when I was five years old. And back then they used to do things in Germany very, very conservatively. Right. So you basically, you got your long acting in the morning and at night. And I had basically like set times and set carb amounts to eat and set bonuses to go with that, because they weren't really doing the whole, you know, check your sugar. And depending on what it is, you need to you know, correct your blood glucose, and then your goals for the meal. So I was basically finger printing in the morning 730 before school, and then I was like fingerprinting lunch, and there was maybe finger printing in the afternoon and before dinner, and I was just like eating at like set times and giving set bonuses. And I was giving like my set long acting insulin, which I think was lentes at the time. You know, as time moved on, I wanted to get more independent. And then they kind of put me on like a new thing, which they called the intensive therapy plan, which was basically how you would do MDI in like a modern way, right? It's just like, check your blood glucose, whatever it is, here's the ICR his eyes F right. And then you just like, correct, and you go, like, go with the flow, but you still just use pen injections. So being like a teenager and stupid and not really understanding what you know, long term complications mean, you know, you just sometimes you you stop fingerprinting, and you just go, oh, oh, well, that's two cheeseburgers, I'm gonna do like five minutes. And then maybe your sugar was like 220, or like 180. Or you shouldn't really have done just like five units, right? went along like that throughout, like, through my teenage years, my parents, they got divorced, when I was really little, even before my diagnosis, actually, my mom was like, having super big mental problems and like, personal problems, and she wasn't really like, on top of my diabetes, while I was being like, I was a child and a teenager. So I was kind of on my way, like, by myself, in that regard, like, you know, she, she took me to the regular into appointments, stuff, it's not like she was she was like, sleeping Willow bridge or whatever. She like, she wasn't really like, like you are if Arden, for example, right? She wasn't like on top of my diabetes, and like, you know, slowly educating me to like, take care of myself. And you're like, letting me off the reins, so to speak, but still pretty much on top of it because it was a teenager, right? And so it just, it just kind of went that way for a couple of years. Right? You
Scott Benner 8:01
don't recognize it's a long, long process to understand a big idea. And it's not like sitting down and talking about it for two hours. It's five seconds here and five minutes there and saying something on the first of the month and remembering to say it again, three weeks later and biting your right through your lip. If they do something that you're like, Oh, not that, but you don't want to call it it's like a pressure point. So you just cruise through it, ya know, it's okay. Don't worry about it. But then you have to make a mental note then as a parent later to come in and clean it up later. It's a lot of work. I understand why it doesn't happen. And if your mom was having other trouble on top of that, then I mean, it makes sense.
Deniz 8:41
Yeah, yeah. And so like, in retrospect, I can, I can understand what happened when I was a child. And when I was when I was a teenager. Frankly, it's still between us. And we're like various estranged with me being an adult and her, you know, not being retired. That kind of really still stands between us. Yeah. Right. Other things as well. But that's also like a huge portion of what kind of stands between us. Yeah, it's like, yeah,
Scott Benner 9:07
but then sure, I mean, that that listen, I'm standing in the middle looking at both sides, I see what could have happen to your mom. That doesn't mean that she didn't still need to do it. You don't even like it's hard, but you still have to go do it. And I just think that a lot of times people think that making a baby is like buying a house plant. You know what I mean? Like, Oh, I love the way this looks I'll put it in the corner and every once in a while dumped some water and it'll probably be okay. Very much not like that very much you making children is not for the faint of heart. And if you think it's easy, you're probably doing it wrong. So you know, they mean Yeah. So you and your mom to this day, not not a great relationship and you think it's mainly because of your diabetes,
Deniz 9:49
not because of the diabetes but basically because of like how she reacted to diabetes and but it's not about like, the main thing, right? Like my, my mom has personal problems and she still has them To this day, like, right, I'm I think she's borderline narcissistic. Right? And it just, it just builds issues. Like first of all relationships, not trying to like tell my mom, for God's sake. Right. But it's like, it's it's just a very difficult relationship with her. Right? We talk from Time and again, right, but But honestly, she lives like 10 minutes from the place I work at, right? And I don't really think I have seen her in like the past six months. And it would just basically be like, you know, guys, hey, I'm going for lunch break, and I could just like walk over and have coffee with her basically. Yeah, right. And we don't we don't do that kind of thing.
Scott Benner 10:32
Does that bother? I noticed that's not why you're on. But does that bother you? Do you think about it? To an
Deniz 10:37
extent because because I also don't really have a relationship with a father. Right? Because, you know, they they split and he went back, like he's from Turkey. Right? So I'm half German, half Turkish. And he went back to Turkey. And I normally I don't even know if he's still alive. So you know, there's the father figure gone. And then there is also the heart relationship of the mother. Right? So it's not I'm an orphan, right? She's still there. And I had a really, really, really important relationship with my grandma. So my mother's mom, but yes, sure. It bothers me, right? Because, for example, I see how extremely close my girlfriend of nine years is with her family and her mom, especially right and also a father. So yeah, sure, sure that bothers you, right? Because you kind of want to like rely on family. But I got a tattoo on my right arm, which says true friends of family. I got that long story. But I got that when another friend of mine was going through a really hard time, and we were all drunk. And then we all like made that vow to get the tattoo. And so there's like four people running around with a tattoo now, which says true friends of family. And I really mean that though, right? It's it's like a funny story when we're like, young and stupid and drunk, right. But it's like, we didn't get into to have a drink, by the way. So you know, don't drink and drive and don't drink and get tattooed. We got it after the fact. And I still kind of live by that. Right? I kind of really consider a group of really close friends, I have my family. And I have done that for probably the past 10 1215 years, I guess. It makes solid sense to me. Right? And so it's, I've kind of, you know, chosen the family I want to have, as many people do. And the family you can't really choose, which is usually your parents or siblings and I don't have siblings. I'm an only child, you know, they're there. And there's past that happens, you know, this history? Yeah. And I kind of just, you know, have to live with it. As I said before, right, I understand what happened and they kind of understand where she is now. being where I am in my life, you know, coming from like a working class family, having myself worked up to like a post grad degree working as a software engineer, right. It's life is hard, right? Life Life isn't always, you know, a pony farm. But still, it's you know, it's
Scott Benner 12:35
I've never heard life's not a pony farm before. So you're very close to calling your episode pony farm, but go ahead.
Deniz 12:44
It's like it's like a German idiom that I just kind of translated. Because like in Germany would say the Siemens company. So
Scott Benner 12:51
Well, I definitely can't make that the title. Yeah. If you send it out to me, phonetically, I can make it the title. It's, I would, yeah, I think anyone would download it. If it was the title was like,
Deniz 13:01
Oh, we can totally try that and see how your dollar numbers are? Oh, I see
Scott Benner 13:05
you. You don't care about my downloads? You're like, Yeah, I'll just let the whole thing collapse. Scott will try it. That's hilarious. I actually, I'm gonna get you to send it to me. So okay. I think I'm just gonna kind of fast forward up to last year, because trip, I think it's fascinating to just do MDI for 25 years, being a software developer. And then one day go, hey, you know, what? Why don't I try this other thing? So my first question is, were you not exposed to it? Like, did you not know it existed? Are we just happy with how things are going? From the very beginning, your kids mean everything to you, that means you do anything for them, especially if they're at risk. So when it comes to type one diabetes, screen it like you mean it, because even if just one person in the family has it, your child has up to 15 times more likely to get it to screen it like you mean it. Because type one diabetes can develop at any age. And once you get results, you can get prepared for your child's future. So screen it like you mean it type one starts long before there are symptoms, but one blood test could help you to spot it early, before they need insulin, and could lower the risk of serious complications like diabetic ketoacidosis or DKA. Talk to your doctor about how to screen for type one diabetes, because the more you know, the more you can do. So don't wait. Tap now or visit screen for type one.com To learn more, again, that screen for type one.com screen it like you mean it
Deniz 14:37
well, so Okay, so I knew it existed but honestly, I didn't really like look into it that much. Because I was always kind of happy with what I had. And so I kind of started looking into like more tech stuff before I went to like a semester to study abroad like a semester abroad to study in Canada. I studied one semester in Vancouver. And I was like, no, no I kind of want to have like my hands more like my hands free to do stuff abroad and then so that's when I got the CGM, basically, because my Endo, he was like, Oh, now you want to CGM. Really? Yeah, sure. Let's go for it. So we did that. I'm in Germany. You know, we have like the whole universal health care thing. You know, it's easy for me to get a CGM. So I got a CGM after like some paperwork. Honestly, what made me go from MDI, after so long to pump therapy was basically suddenly out of nowhere having a macular edema in my eye, right. So I went to into the, like, the regular checkup with my, of the eye doctor guy. And they, you know, they do the whole thing where you like, drip dripping in the eye, and the whole thing gets bigger. And then they look into like the retina. And I don't really I don't have retinopathy, and I don't have anything else in the eye, basically. But suddenly there was this macular edema. And so the guy goes, Yeah, how's your diabetes? And I go, like, yeah, my agency is like, five, nine, and the one before was like, six. Oh, and the one before like, was also an A goes like, Oh, you got to be kidding me. And I'm like, No, seriously, like, the past eight to 10 years. I've been in like the low 60s. And you know, I got my act together. And so it was like, Okay, this is this is super, super bad. And we need to fix this. And so they started me on like, like, I injections for eight months. I think it's gone now. Right? So spoiler alert, it's gonna, everything's fine. But when I went back to my Endo, and was like, okay, so I got an issue. I have something in my eye. What do we do now? Yeah. So he was basically like, Okay, your diabetes is basically so like, fine tuned, we kind of need to find out, like, what the issue here is, it was like, you know, this, this could be long term complications from basically having somewhere between like, you know, eight to 10 years of both during your childhood and my teenage years, but it was like, still, it is really early to have that kind of complication. And at the time, I was 30. No, actually, I just had turned 31 to have that at 31. With like, the sugars you've been having for the past 10 years. Yeah, he called it metabolism fluctuations. So, you know, talking to you, it's basically the whole postprandial spike. So going higher, going high after a meal or going high at like a random point in the day, and then coming back down, being in range, but just the whole, you go up, you go down, you go up, you go down. And he was like, yeah, maybe that is, like some issue because they can also, you know, change things in your eyes, if you have a lot of that basically. And say was like, you know, your agency is really low, and really well tuned. And the only thing that I personally can think of is basically, let's put you on a pump. And let's try to basically replicate the human body functionality, as closely as variability with the spike. Exactly, yeah. Because if you if you're on 10 injections, if you're especially if you're along like like long lasting insulin and shortlisting like reppin, insulin, it's always you, you do the injection, and it's always a push, and the push of insulin and the push, and then it levels out. And then you know, it's it becomes effective, right? And then you have, but you always have this like certain peak. And as you know, if you're on a pump, you only use rapid acting or ultra conducting insulin, you don't really have like those high peaks, right? And he was basically trying to get the insulin dosage in my bloodstream as you know, as evenly as possible and also get blood sugar as evenly as possible, right? Yeah,
Scott Benner 18:16
I think back I just had an experience where I was talking with somebody the other day about some of the things that they learned on the podcast to the Pro Tip series. And it took me back to managing Arden like that, before you know Arden's using Iaps. Now she used loop before that she's used Omnipod, five, like, we've used a lot of different algorithms. And before that, an algorithm wasn't a thing when Arden was eight years old. You don't I mean, like, so it was just me like looking and thinking, like, we have to match the effort here, right, like blood sugar is making an effort to drive up. I need to be making an effort to push back but not too hard. And you know, once you have a CGM, it's really when it opened up for me right art and puts a CGM on you can see it in real time. And you're like, oh, I need to add, I don't know, the way I thought of I was like, I need to add resistance here. You know, and not insulin resistance, but resistance with insulin, like blood sugar is trying to go up. I'll put some resistance here. So it can't go up. I'll take the resistance away. So it doesn't create a low later, you know, if she tries to get low, we're going to add some resistance with carbs, but not enough to push her back up again. And now I look back in hindsight, and I go, Oh, I was an algorithm. That's, that's what I was doing. I was I was just about to say any of the algorithm and it was exhausting. I don't want you to be like, no one should be confused. I was exhausted and dying, I think, yeah, totally. And up in the middle of the night and etc. But Arden's a one C's were in the high fives, and mid to high fives, and she was growing up and didn't have any trouble with their diabetes and I kept thinking, I mean, hopefully something will come along, right you don't I mean, like and then all of a sudden one day like there it was. So Having that experience of living like that, having figured it out on my own, finding out a way to apply it, and then seeing a machine come in and go, Oh, I could do that for you. And then having watched them now improve over time. I keep thinking like, wow, this is insane. Like maybe, like fingers crossed, like maybe Arden doesn't go into an eye doctor ever and hear Hey, what's that in your eye? You know what I mean? Cuz that's really the one that's what I'm doing it for. Right? Like you're you're doing it for short term happiness and health and long term happiness and health. The whole thing is happiness and health. Honestly, I'm glad that they were able to fix it for you. How many injections did you get before it was clear?
Deniz 20:36
I got I think eight injections. So yeah, January to August every four weeks.
Scott Benner 20:41
They say it doesn't hurt. Is that true?
Deniz 20:43
It really doesn't hurt. But the funny thing is all
Scott Benner 20:48
right. Like when they're coming at you with it? Well,
Deniz 20:50
so Okay, so typically, they they put like this thing in your eye, which basically like prise open your eyelids, and you're like told to Okay, and now look at like a certain direction. I think for me, it was like, like, lower lower right corner, basically. So you were just like looking down. And then they do the injection like all the way up there. Right? The eye is numbed a bit, right? That would like a numbing drop trippy thing in there. They sanitize the shot AI as well. Like, like, did they put all this stuff on your face. And you're like not like, you're basically saying that like this, you're like not supposed to touch your head at all, like grief, or move or whatever. And then they do the injection and you don't feel it, you don't see the needle. The only thing that I felt was basically it's a bit like, as if someone like just like, precious, like, put some pressure on you. Like, if I don't tell you I'm touching your face. And then suddenly a finger touches your face, like very rarely. But it felt like that's the feeling in your eye. Like you feel like a little pressure thing. And then what you see is basically it's a bit like as if suddenly before your eyes, there's like there's like fluid or like a fog, okay, for like a minute because that's like basically when he pushes in the injection solution, right? And it kind of it kind of mixes in there on top and does whatever. But now you don't you don't really feel it magical funding your studies saying it doesn't hurt. So he does the injection I think was a third of the fourth one. And then he does an injection. And I feel like him pulling away after the injection. And he goes, Oh, and I'm like, Doc, what is Oh, like, please don't just Oh, me. And he goes like, yeah, so I think a little blood vessel just burst. That's totally fine. That's, that's all right. Nothing's gonna happen to you. And I'm like, What do you mean blood vessel verse? Yeah, there's just like, some minor bleeding, don't worry about it. And then, you know, they they took like, they took like, some tissues and put it away and then took like, some more sanitizing lotion on it right to like, stop the bleeding and stuff. And then they were like, okay, you'll be on your way Your eye might be adjusted a little bit read just a little bit read, don't don't worry about it in like a week or so it's gonna be like it's gone. Okay. And so I was like, Okay, fine. And so they basically put a bandaid on your eye after that. And you're supposed to leave it on for like six to eight hours. And so I had this bandaid on my eye. And then in the evening, because the appointment was like 10am or something. So in the evening, I took, I think the band aid off tomorrow, and they're looking like I'm in the bathroom. I took the benefit of my and I look into the mirror, and I kid you not I looked like like T one. Like, what's the terminal name? T 1000. Like my like, like my I was completely red, like completely. There was no, no white left him I was completely red. And so I'm like, what the actual F is happening here. And so it was it was like eight or nine, eight and 9pm at that time. So the the the clinic was closed. And next morning I called them and I'm like, Yeah, so the dude said there was a little blood vessel that burst and I thought like, you know, have like a weightlifter who has like a little blood vessel in the eye, right? And you just see like this little red thing in their eyes. And they're like, Yeah, you know, what, if it's really that bad, just come in tomorrow. And so I go in and I'm standing there in like the welcome area, and people are going by me and they're looking at me like I'm a zombie. Right? Because like the whole I was like, yeah, so anyways, he was like, he looked at it the next day, and he was like, Yeah, you know, it does look bad now but it'll be gone in like a week. And so I ended up looking like at five weeks. Five we'd like it. Yeah, because he was so that was like so much blown.
Scott Benner 24:05
And could you see that time? Yeah,
Deniz 24:08
no issues we've seen like little but it was just like,
Scott Benner 24:12
wasn't like a horror movie. Everything wasn't read or tainted or
Deniz 24:15
No, no, no, luckily not. Yeah. And so it took like five weeks and it went from like laundrette to like basically brown to like lightly yellow. While it was like basically decomposing the blood in the eye or whatever.
Scott Benner 24:29
Blood took you a month to explain to the entire neighborhood I don't have some weird i COVID or anything like yeah, please don't. Yeah,
Deniz 24:37
it was kind of bad because you know, at work like my close team, like the four or five guys at work, they kind of know something like everyone like everyone who asks, I'm going to tell them about Vedic right and my close team. They know it. They know the pumps from beeping and CGM from beeping right? Yeah. But if you just like suddenly walk into work with like an eye that looks like that everyone's going like stay away. Stay away. And so, once like so let me let me see if I can, once I can show me a picture, I'm gonna show you picture once like how do I,
Scott Benner 25:08
the contour next gen blood glucose meter is sponsoring this episode of The Juicebox Podcast. And it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your insurance company. That's right. If you go to my link contour next one.com/juice box, you're gonna find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger, and Meijer. You could be paying more right now through your insurance for your test strips and meter than you would pay through my link for the contour next gen and Contour. Next One test strips in cash. What am I saying? My link may be cheaper out of your pocket than you're paying right now, even with your insurance. And I don't know what meter you have right now. I can't say that. But what I can say for sure is that the contour next gen meter is accurate. It is reliable. And it is the meter that we've been using for years contour next.com/juicebox. And if you already have a contra meter and you're buying test trips, doing so through the Juicebox Podcast link will help to support the show. Dan and I are looking at each other day, which we don't do very often but he's got like a rock solid internet connection and I have to admit, I can't look at myself because I can I can I'm so stunned at how like when I hope my god that's your that was
Deniz 26:32
that was that was just like after the like after took the benefit of that was This is horrible.
Scott Benner 26:37
Part of me wants to send that to me so I can make that the cover image for your episode. Oh, please.
Deniz 26:42
Oh, please don't and so and so. Oh, I'm sorry. I'm sorry. This was this was right after the injection. Okay. And then what I showed you this this was like the next morning. Oh my god. And I walked around this for like, like a solid month. Like,
Scott Benner 26:56
you look you look like a like a robot? Like yeah, exactly.
Deniz 27:00
I looked like what's the name? TT 1000. Yeah, yeah, the Terminator. Yeah, I looked like the Terminator was like, just the right I it was it was really stunning.
Scott Benner 27:09
Wow. Did it hurt during that time? Or just looked weird?
Deniz 27:13
No, it just it just looked really weird. And it it felt a bit like as if you know you you bumped your your arm or your your like leg on on something. Right? Like, just just like a mild hematoma basically. But it wasn't it wasn't really painful, right? I could see without any issues. Right? Right. And yeah, I just I just looked like a zombie for a month. So this,
Scott Benner 27:31
this experience makes you say, I want to know about all this stuff now. So like, what pump do you go to?
Deniz 27:37
So second thing, coming back to the Hey, why didn't you get into like pumping or whatever, and did MDI for so long? I always wanted like, I always wanted to avoid tubes. I always wanted to avoid tubing. Periods. I never wanted tubes. So I'm using Omnipod. Now, right? It's the clear choice. And the thing here in Germany is we do have great health care. And we do have, you know, it's not a huge issue to get on pumps, but they are a bit picky when it you know, gets to either want that specific pump. Because, you know, or they just want to reach in the closet and give you the one they have. Yeah, kind of. And so so my end there was like yeah, that's that's gonna be a bit of a fighting, right. And so he basically put in like a bunch of paperwork to the insurance company here. Then we really actually had to fight and then I got the only pot dash I am on now I got it on trial I had like they they shipped me three months worth of supply here. And then after three months, I had to hand in a ton of paperwork, you know, glucose diaries from like, the past six months a one sees and the whole blood panels from like the past year or so. You couldn't just show him that picture of your eye. No, no, no, no, no, no. I wasn't worried. I was already on a pump when that when that happened.
Scott Benner 28:48
Okay, so yeah, I mean, like, Yeah, this is why I please,
Deniz 28:53
exactly. So anyways, I was we were really fighting. And so I got it on trial. And after three months, everything was even better than it was before. So I went from like, the agency before I went on Omnipod was six, two, and the agency right after was four or five. So I it dropped by it dropped by a weight. Within a span of three months, you
Scott Benner 29:15
eat in a low carb style or something like that. No,
Deniz 29:18
I basically, I basically did the whole I'm training with the lady from insolate at the clinic. And the second pod at home was on loop. Because I was like, you know, I'm a software. I'm gonna do this
Scott Benner 29:32
right. So you went from 25 years of MDI, almost directly into I'm gonna download an algorithm off the internet and use it. Sure. What, why does that I love I love the why not? I'm trying to figure out why not sooner.
Deniz 29:45
That's true. That's true. Why don't sooner and I've actually,
Scott Benner 29:49
I mean to say I think there's a bit of a lag because you're in a different country. I'm sorry, I'm talking over you want to know outdoors. I don't mean like, Hey, why didn't you figure it out? I mean, like, why did it like it? Just see seems like such a natural step to me. Like you're a software developer, you're in your 30s. Like, if I said to you, Hey, you want a Tesla, right? You'd be like, Of course I do. Like that fits in like the narrative what you're interested in like, it just feels like this should as well, but you, but it really took like a health scare to get
Deniz 30:18
you there. It took a health scare to get there and I don't want to put any blame on my endo because he's a really super great guy. He's He's a type one himself. So great bedside manner, you know, because if you're like talking to him about a specific issue you're having at like, a specific activity or whatever, you know, he gets it, because he's, it's like 99.9% He had already had that situation right? But he's an older guy. And he is like on this super old pump and he's basically I guess, team don't change a running system right? It's working for him he's having like from you know, objectively looking at it he's having all the results in like the you know, agreed upon metrics or like in the agreed upon ranges basically, right. He you know, he has yes is a one sees in the ranges that should be in, he's, you know, he's not having a lot of high posts or whatever. He's, he's doing okay. And in retrospect, I wasn't doing okay, right. Yeah, I 100% was overweight. My Basal was too high 100%. And I was basically feeding insulin, but I didn't really know it right. Even though I had a CGM. And I was I was having more lows, like my lows were below 5%. But now I'm having like, like, looking at the Dexcom basically, I'm I don't even have 1% of loads. Now.
Scott Benner 31:32
Did you lose weight since you went on a pump? Not
Deniz 31:34
that much. And I thought, I'm weightlifting. Like six, six days, sorry, six days a week. And you know, it's eating a lot and I'm eating like 300 400 grams of carbs a day, you know, I'm not low type S Sorry, low carb rain in any kind of way. And form or shape? Yeah, no.
Scott Benner 31:50
Do you think if I named the episode six days a week, anybody will even hear it through your accent? That was fantastic. Like, I'm weightlifting, weightlifting, six days, six days a week.
Deniz 32:00
Yeah, go for it. Because because the Jerwood for six is six. Okay,
Scott Benner 32:04
I heard you get caught in between two languages. But so basically, you've got a great Endo, but he's older. His mark for what is good is different than what is good now. And he's, if it ain't broke, don't fix it person. In a world where things are moving so quickly. You always have to have an eye on what's happening. You don't need me. Exactly. Yeah, exactly. I don't know if you've ever like I don't know, then if you listen to the podcast, or you if you don't, or Oh,
Deniz 32:31
I do. I don't. So the thing is you released so freaking many episodes. I usually can't really get through like all of them by the time we release new ones, but I usually listen to like on the way to work and like my commuting. Yeah, I know. I'm also quite active in your group. Like, actually, you are a job. Yeah.
Scott Benner 32:52
Yes. Because I always I refer to one person, because the person helps me to Mike because Mike helps me with Arden's like algorithm, like the setup and stuff. And so if somebody has a question, I tagged him, and you're like, hey, you know, I can't answer that. And I'm like, I don't know you.
Deniz 33:08
But I'm actually commented that because I already had, like, answered the question of the poster. And I had, like, I don't know, like, like, 20 likes on it. And it was like, Hey, so what exactly can Mike dude I just answer here, and I was I wasn't being serious, right? It was.
Scott Benner 33:20
No, I know. You're kidding with me. But let me give you a little like, inside look, okay. Yeah, there's like 46,000 people in there. 125 new posts a day. I saw the gist of it. I ran my eyes through it. And I was like, I want to make sure sure somebody who really understands this solid, but I couldn't read all those comments. So I was just like, yeah, totally. Yeah. Like, it was, it was a lot of fun. But sorry,
Deniz 33:39
my endo is like don't fix it. Today, bro. kind of guy. Yeah.
Scott Benner 33:42
So I don't know how much of the podcast you've heard. But I put out a lot of content. There's no doubt you can't listen to all of it. And you can't, you can't have listened to the entire 10 years to know my psyche and everything. But there are a few things that drive me making the podcast right? Overwhelmingly, it's my daughter's health. Like, I think if I can stay abreast of things, then she has the best chance of being okay. And then everybody else listening gets the benefit of that. Right? Well, anonymous, and it's the community that it's created. Because, again, I've mentioned this before, I did not expect this part of it. I didn't understand that. Like, I mean, 46,000 people on a Facebook group, it gets 125 posts a day, like 9000 likes, comments, hearts. I think there's something like 28,000 of the 45,000 people are active every day in some way, shape, or form. It's like a small football stadium every day. It's insane, right? And it all flows, whether you think it or not. It all flows through me it follows my vibe, it does what I want it to do, like I'm directing it very kind of in the background. And so that all is very important to me, too. And part of what drives me because I see how the community supports people. And I see how people whose names I've never seen before, whose faces I don't recognize can come and tell me in a Facebook post. You don't know that I've been listening to this podcast for nine months but I have my kids they want CES 5.4 Yeah, like I helped that person without ever meeting them or knowing that I was talking to them. That's amazing, right. But the third kind of prong of what motivates me forward is the thing that I don't honestly talk about very much, which is my best friend who's, who's that, you know? So my boyfriend Mike was I don't know, you're, you're very kind to. But my friend Mike was diagnosed when we were just getting done High School. And we didn't talk about his type one diabetes, so much so that when my daughter was diagnosed, it didn't occur to me that I knew someone with type one for like a week. Oh, wow. Because that is just not how it worked. He was regular and mph, he shot. If he got dizzy, we fed him. Nobody wanted Mike to drive. You know what I mean? Like that was pretty much the extent of it. I knew him to be a completely lovely person, thoughtful and lovely and intelligent. But if you just met him a couple of times, you might think he was a little. It was probably like in the four hundreds I just stable, like angry like he thought he had a short temper. None of this is beautiful person. But I think about his blood sugar and how high it was all of the time. And oh boy, mike stands up in his living room and dies in his 40s, you know, just has a heart attack. And just, you know, it didn't take him that moment. But it it did in a couple of days. He was already on dialysis for years. Oh, wow. When I look back on his life, he was unlucky enough to be diagnosed at a certain time. Yeah. And then he was unlucky enough to be with a doctor who didn't push him to modernize his care. Yep. And I'm certainly not for just running forward and changing every time something new comes up. Like I'm not a new car guy every six months, kind of like idea even if I could afford it. But you can't find yourself in a situation where 15 years into your diabetes, you look up and go, what are people doing? I'm doing? I'm doing Lantis and MDI, yeah, you know what I mean? Like, because the advancements now are happening so quickly, that things are going to get better and better and better. And these are only opportunities to improve your health. And to stop you from standing up in your living room and falling face forward in front of your wife. Yeah, you know, like, so I just, these are the things that like, personally drive me behind the scenes to turn out. I mean, you if you saw my calendar, you'd pass out like I you know what I mean? Because I don't care if you please, everyone listening, listen to every episode, please. But if you can, I understand up so I put five out a week, you pick the ones you want. You know what I mean? And and that's what I do, basically. Yeah. But that's why because I'm trying to constantly reach people. I mean, if I'm being honest, then I have some guilt about Mike. Because of all the people that I've reached and helped. He would never listen to me. It's kind of ironic, right? Like, I'm like, you know, the guy that runs the thing. Like, I'll tell you, and he didn't want to he didn't want to hear it. And I do think sometimes that I just didn't try the right way or hard enough or frequently enough. And I am baffled sometimes that I'm able to help a person I've never met before remotely, but I couldn't help Mike to understand his diabetes better. I'm driven by the idea that I in very plain English do not want to die before my daughter. Yep. And I do not want to see her have health issues as an old man. Yep. Like, I don't know that in my 70s. I could look at my, my grown child have a real health issue and not want to throw myself off a building. So I'm doing a lot of things to protect my own psyche, if I'm being honest, you know.
Deniz 38:42
So just just just for the record, just for the record, Mike really got his together. I think you're talking about a person like Mike, right? You kind of know, but don't listen to the podcast. Did I get that right?
Scott Benner 38:53
No, no, my friend Mike is the friend. I'm not talking about the other mic. I'm sticking with my friend Mike is I grew up yeah, I'm sorry. I'm sorry. Okay. He just didn't. Yeah, never. I don't even think he ever wondered. Yeah. And then he didn't have the luck you I can't believe I'm saying this is luck. But he didn't have the luck. You had, like the first medical thing that popped up for Mike was his kidneys. Not like we can give you some injections in Iran. Yeah, yeah. You know, anyway, anyways. Yeah, yeah. Oh, sorry. But tell No, no, no,
Deniz 39:27
I'm very sorry. But it's basically you know, you're raising such a great, great point, because, like, my girlfriend was just, I think just the other day, we were like, sitting down for dinner. And she goes like, no, what? How come you didn't like do this all sooner? And I was like, we've been together for almost nine years now. And, you know, you've met me you've been part of my like, diabetes journey and you know, my life, right? What would you say? Like, was I living a bad life? Was I having issues with it? And she's like, You know what? No, you weren't right. And so I was like, Yeah, That's the point exactly. And it's so funny, not wanting to change topics here, but actually the great Katie De Simone, right, the creator of loop docs, I was actually following her on Instagram, because she started like a way to like, like a weight loss journey and started doing like CrossFit. I remember and I kind of knew her from loop because I had read off loop. And then I started kind of started, like, following her on Instagram. And we actually were like, exchanging messages on like, on a regular basis around her like, exercise stuff. And because I'm a gym person, she was a gym person. It was COVID. Right? We were working from home and in like a garage and stuff. And it was so funny. And it's like, it's like this thing like, these are like weird stories live right sometimes on the day, Katie passed away, right restaurant piece. I got my first pop. Okay, so I'm getting goosebumps right now talking about it. But it's it's like I've I've known these kinds of things. But for some reason, when you're like, not really pushed into that kind of direction. Because I was having like, high fives a one season, I wasn't constantly going low, or like staying super high all the time. Right. And so for some odd reason, and I can't really tell you why I honestly cannot tell you why I never got into it. And now looking back, it's like, I'm just doing so much less around diabetes. Yeah, like, right. It's like, I haven't CGM. Now I have a pump. Now I have an app that takes care of my insulin. Basically, I look at my phone, right? I've only looked at my phone. Since we've been talking because I'm getting messages all the time. I'm not even concerned about my diabetes, right? It's just I'm just, I'm doing a Bolus here and there, and the rest is taken care of. Right.
Scott Benner 41:33
I've been unaware of Arden's blood sugar for hours. Now, I don't know what it is or what it's doing. I haven't thought about it. The only reason I even thought about this morning is because we just upped her ozempic dose from 1.25 2.5. And then, like a day and a half after we opted, she started having these weird lows. And it was like, Oh, God, I think it's the ozempic and we're making changes to settings and stuff like that. I'm also a little panicky, because I have all the auto tuning turned on on Iaps. I think we realized that the ozempic needed to be turned up for a couple of weeks, but didn't like do it yet. Yeah. And so the the algorithm was pushing harder. And then suddenly, we thought, Oh, now it's helping and the algorithm is still pushing, so I'm trying to make adjustments and stuff. It turns out by the way, that's not where her lows were coming from her pocket. nicked up blood vessel. It's a second time. Second time it's happened since she's had diabetes. But we were basically she was mainlining insulin, like, yeah, it's like, it's like they're like this. Yeah, so quickly. So like, last night, I was like Arden luck. And like, we keep making these changes and nothing's happening. You know, like, We're chopping at your ISF. We're chopping it your carb ratio, Mike, you know, something's wrong. And and then two o'clock in the morning, she sent me a picture of like, this blood on her leg? Oh, yeah. Because she pulled upon it just like a fountain. Yeah. And she goes, Oh, I know what happened. And I was like, okay, so she put a new pot on, and we got her set. And I just sent her a text, like six hours ago. And I was like, hey, put the ISF back to this. And that said, I haven't thought about it again since
Deniz 43:06
then. Yeah, no, yes. It's the funny thing is, yeah, but I
Scott Benner 43:11
mean, all that turmoil and unknown ideas and things you couldn't imagine. And still in a 24 hour period, I had the whole thing worked out, and we're good again. And now I won't look at it again, should just go live her life. You know? Yep. So now I take your point. So, so when you get on this algorithm, and you're you're managing an agency in the forest, Jesus, that's crazy. Why are you able to do that? I know you're exercising, and you're probably
Deniz 43:36
in the five, sorry, five, excuse
Scott Benner 43:39
me, low five. So if you're exercising and eating well, and you're using an algorithm, and you understand how the algorithm works, I get how you end up there, like it's pretty simple. But can you lay it out for people? Like why does it work for you?
Deniz 43:50
Well, so I always when I'm getting asked and like the Facebook groups that I'm part of, right? I always say I'm just proactive Rama diabetes, basically. I work out six days a week. So there's like a certain exercise level already in there. Right? I try you had the glucose goddess on your podcast, and I really enjoyed that episode, actually. But um, she talks about like, clothing the carbs. And I've like intuitively been eating like that for four years now. Right? It's always basically a handful of carbs a handful protein a handful, the veg. I like that, right? It's, it's been like that for like the past. I don't know how many years. If I have my CGM Allah, it's quite low. Right? I have during the day I have it at 155 milligrams, deciliter. I haven't on 155. So I'm kind of proactive around that. Right. If I'm working seated for most of the day, I'm a software engineer. So after lunch, I tried to take a walk. First of all to like get my blood going because I've been sitting for the past five hours so you don't just you know a poor, right? But but it's just it's just I have lunch with my colleagues. I really enjoy having that and then I just go for like a 10 minute walk, get a coffee, have my coffee in my hand and just walk around like like take a walk around the block. that kind of stuff, right? If you basically understand how, like the human body's metabolism works, and how insulin affects it, and how like glucose affects it, it's like, this is gonna sound like pretentious analysis, but it's not rocket science. Once it clicks, once you've understood, like, how to how the heck it works, it's not really that hard. I'm gonna
Scott Benner 45:20
say something. It's gonna sound crazy for a second. I mentioned this to you before we started, but you can see it behind me because the cameras on Yeah, so my kids at Christmas time. I don't know if I have to tell the story. Like I can tell it in two seconds. But we basically were standing around a few days before Christmas. Yep. And I said to everybody else, like name, something you wish you'd done that you haven't done? It was just like a thought exercise to have a conversation. And it got around to me. And I think I blew everybody away by saying I've always wanted to raise a chameleon. And everybody was like, you've never mentioned that once. And I was like, No, it's not a thing I talked about, it's very difficult to do. It's a lot of effort. It's not a thing I would actually do because of all the effort. But it's a thing. And I think about what some I wish I would have tried that. Anyway, now there's a chameleon here with me. And, and I've had to learn about like it very quickly, because it's a delicate animal. And I don't have months to figure it out. I had like, days to figure it out. And oddly enough, I figured out how to keep this chameleon healthy the same way people use my podcast to learn about their diabetes. And these intersecting ideas have just been falling on me for weeks now, like, found a man named Bill out in the world who just has a like a ton of knowledge, and he's good at communicating it. Yep. And I absorbed what he said. And in no time put this thing in a really healthy situation. Neither here nor there. I'm watching how it eats. And it eats to ensure its bowel movement. It's very interesting. Like it. It's got like these four or five bugs that it really likes. Some of them have more fat in them. Some of them have more. I don't know. calcium in them, etc. Yep. And that thing will like yesterday, just boom, boom, boom, and it'll eat for crickets. Like it's nothing. Yep. And then the next day you show it a cricket? And it's like, no, no. And then you wait, and you come back to a very well hydrated bug that's high in fat. And it goes, Yes, that one. And it hits that cricket. And then every then it it's fascinating. It's all about it's digestion. Like it's whole light. But it knows, like it knows how to turn its nose up at something when it has an option. And as people, we don't know what we're talking about. You know what I mean? Like, we don't understand food. Nope, most people don't understand food. And so it mean, anyway, that's exactly what you're talking about, is putting in the right things, giving yourself the right exercise. This chameleons case, it's about humidity. In your case, it's going for a walk and exercise. Yep. You know, and then your body works. Well. It's interesting. Oh, yes. Sorry.
Deniz 47:52
So and also with like, the whole eye thing, I finally talked to me. And I was like, Yeah, so what do we have to do? Right? And I was I was talking about, like, how he said, we have to, like, try to keep the fluctuations low and stuff. So I've been in like the high 80s range on MDI. And since I've, I've jumped ship, and I'm on I'm on an AI D now and I got the top now, I'm on a certain app now. You know, it's, it's basically I have to cut things to not be 100% Time Range. Okay. Yeah. Right. But but for me, and this is this is actually whether this whole thing is an issue on like, the mental side of things. If I am 100%, time in range, but if I'm 160 for the past six hours, I get achy. Yeah. Right. And, and it's not like it's not because I know, you know, I'm gonna die, but it's like, you know, I'm just above like, a certain level I don't really want to want to be at right. And so I I'm kind of getting like, slightly irritated. I'm like, Okay, guys, I'm gonna go for a walk now. Right? Or, Hey, guys, I'm gonna go on a treadmill alone. So it's, it's like, I've really, I really try to be in like a, what they call tight timing range. So between like, 7140, ideally, even below that, right. And I really tried to be there. And because I also came to find out, you know, if I'm, if I'm basically above 160, I start to feel a certain cognitive decline. Yeah, I really feel it at work, for example. So I tried to be below that, because it just affects me in my day to day life.
Scott Benner 49:24
Ya know, I noticed that first when Arden was younger, and she played softball that over a certain number, her foot speed literally diminished. Yeah, she just she was slower all the sudden. Yeah. And you're saying because you're doing a, you know, a thoughtful job, you can feel your cognition. And I would imagine to a third wheel, a third prong of this wheel is you're also thinking, ooh, complications, like you now have that in your head where you didn't have that before. Right? So it's how I actually feel it's how I actually think and it's an eye on the future, which is the thing by the way you brought up earlier when you asked your girlfriend like was I did I really look like I wasn't doing well. The one thing you didn't have during that time. I was an eye on the future. I didn't mean to say I on that's seemed like a weird pun. But I didn't mean it that way. No pun intended a red eye on the future. Should I call it red eye on the future? Oh, wait a minute now we're getting there. Red eye on the future. It's a little long, but I don't hate. That, to me is what you were lacking. It's what everyone's lacking. I know that sounds overly simplistic, but we're all lacking giving enough consideration to the thing we can't see or imagine. Yes. You know, that's pretty much what you're doing here. So yeah, exactly. There was part of me that when I knew you were coming on, like, I really did want to talk about IEPs a little bit and how it works. But I don't know how comfortable you are with that because of things that are well,
Deniz 50:45
I mean, if you got questions, let go, right, I can, I can totally answer questions. I've been on it for the better portion of like, oh, eight, nine months now. Okay, because so I'm See I got on loop. And I didn't just get on loop. I also jumped into the whole, you know, DIY community. And I basically jumped like both feet and head ahead, through the wall, basically. So like, two months later, I was I was answering questions. And like three months later, I was I started contributing to the projects, right? Because I was like, this is, you know, I want to pay it forward. And so by now, I'm a moderator in the loop of learn group, if I may plug them here, right. I was a moderator in the IPS group. But I still helped around that application, I contributed in a major way to what people may or may not know, as the browser build methods, right? I improved the build method there and, you know, improved automations in that regard. And yeah, I'm just I'm just part of like, a bigger community now that I kind of want to see thrive. Yeah. Right. And so ask away by any means.
Scott Benner 51:49
So I am in the position where the other mic that you thought I was confusing earlier, Mike, Mike has been on the podcast and who helped me build Arden's app? Yes, he gave me the lead in settings. He's just basically went through every menu and was like this, that make that one this this like that. So I don't know why I started where I started. And the truth is, is that once it was set up, it didn't need a lot of dial turning to get it there. Yep. You know, I just had to get her Basal rate or insulin sensitivity and or carb ratio. And once I got all that, right, it ran pretty well. And then one day, I was like, this thing says, it has like dynamic settings and like auto tuning and stuff like that. And I was just like, blink. I'll turn that on and see what happens. Yeah, this is the first system that I'm using with Arden that Arden's using, yeah, that I don't think I can thoughtfully talk about its execution. I just know it's working. And I know if I keep her settings commensurate with her needs, that the rest of it kind of works. Yep. Do you know all those settings? Because it feels like there's 50 settings? Like do you could you go to every one of them say, Oh, this one's 3.8. But I know why it needs to be 3.7. Like, you're not asking well,
Deniz 53:00
even though there was like a bunch of settings in there, which is also what makes it like very much more complicated to like get into compared to loot, basically, right? There are like a handful of settings, I want to say maybe like a dozen at max, right, that you kind of have to look at. And then if you get those settings and your like normal profile stuff, so like Basal carb ratio, ISF fine tunes. And then also, depending on what kind of dynamic algorithm you choose, there is logarithmic and sigmoid in it. It uses your profile settings in a different way. Basically, you are kind of, you know, off to a really good start and off to like, oh, not a good start. Do you really? It's gonna work? Well. Yeah. So I have said, if you're talking about auto tune, and if Auto Tune is on for Arden, while using dynamic please turned off.
Scott Benner 53:48
Okay, so auto tune and dynamic can't be on at the same time. It shouldn't be on No. So what's auto tune?
Deniz 53:55
Auto Tune is basically does every 24 hours, it kind of looks at what what happened, so to speak, and it adjusts your Basal and if you choose to do to let it do it. Also your eyes F and your corporations. Okay. And it basically overrides what is in your settings for that. And but mainly basil here is the problem because depending on what dynamic algorithm you're on, I think you're on logarithmic, I guess I don't know if I'll
Scott Benner 54:21
say that. And I thought I have no idea which one that is,
Deniz 54:25
I think you're on the default one. And the default one doesn't really rely that much on the profile is F okay. If you if you got if you got auto tune on. And the way this algorithm that works are like the grants below the IPS interface works is basically with every loop that it does, like with every cycle that it does, which is every five minutes there comes a new CGM rating. And with the new CGM rating, that's basically the heartbeat and then it takes a bunch of things into consideration. Your IRB, your current glucose, and then it does predictions. You've seen those four lines, right? Basically it's five lines But you've seen several lines. And depending on certain conditions, it's averaging those multiple lines basically into like one prediction is what it wants to use. And based on this prediction, it basically decides, Okay, I'm going to issue a zero temporary Basal, I'm going to issue a temporary Basal that's increased, or I'm gonna give you an SMB, which is a super micro Bolus. And based on this algorithmic choice, you're getting insulin. And so now, while it does that, dynamically for our now, because you've toggled on the dynamic stuff, so it will also change like every five minutes, it may also adjust basically her ISF, and it may adjust for Operation depending on if you toggle that on or not. Basil is very, very, very important in that decision, basically, because because it takes your basil profile into consideration when it's doing the whole calculations around it, like whether it should issue a temporary basil or whether it should issue an SMB and what the dosage of that SMB should be like, if you got auto tune on to like, come back full circle here, if you got auto tune on, you have something that check like that may change Arden's basil every day of the week. So you're now trying to do like math calculations, it's a bit like you're in high school, and they give you a math test. And every five minutes I come to you and I just rip the paper out from you give you a new paper with like new numbers, and you have to restart all over again. Okay, that's kind of what happens when you got auditory with dynamical. So it's like me shouting at you giving you new numbers and expecting you to get perfect results with it. It's like an ever changing bases. So
Scott Benner 56:31
it's one of the other dynamic settings on or auto tune on not either not both, but which which do you have on,
Deniz 56:39
I have dynamic on I have never used auditing, because I know that my the Basal profile that I have in here is basically really, really well set. If I look at my IPs, when I get up, I am basically flatlining and I do intermittent fasting or like, I don't want to call it intermittent fasting. But I usually have like the first meal of the day between like 1130 and 1pm ish, right? So and I had my last thing to eat, like maybe 10. Right 10pm. So there's at least like 10 to 12 hours in there. And I'm usually quite flat in there. So I know my basic settings are pretty well and pretty well tuned, right. And so I don't want something in there that just keeps keeps changing it. And also, I know the math behind it to an extent. So I just don't I want to avoid basically the whole, ever changing thing, unlike me shouting new numbers for you while you're doing them off test. Gotcha.
Scott Benner 57:31
Is there a world where being a female that's getting your period? Is there a value in like, once a week going to the auto tune and be in like, here, do it now? And then like instead of it happening all the time? Because you're gonna get like, I mean, your, your trust me?
Deniz 57:51
I'm aware of what you mean, because everyone
Scott Benner 57:55
is lucky. But yeah, like, you know, you could be three or four different people every month, as far as diabetes is concerned. So
Deniz 58:01
I don't want to give like advice on that kind of stuff. Because I am no woman, right? I don't get I get don't get my period, right. But just from like, where I stand and what I know about the algorithm, I wouldn't, I still wouldn't turn on auditing, because basically, the EPA is taking care of those fluctuations for you. Okay, and if you really feel like you're not getting enough insulin, I would just put on like a temp target, that just raises you a bit sorry, that like drops, you bet. So to increase the thing, IVs also got the profiles. So you could you know, you could use that and just go on like 120 a person profile if you feel like that. But usually the way this whole thing works, if it sees you are more resistant, it will like lower the ISF number which basically makes the algorithm more aggressive, and it gives you a bit more insulin. Yeah. And the same thing around, right. If if you know the period has ended, and you're back to normal, quote, unquote, right, or normal world period. Sorry, I don't want to say that. But it's like the bodily resistance and insulin needs go back to your fewer impacts from hormones. Exactly. Yes. If you go back, if you go back to that, the app should also kind of like sense that an extent. And, and also what's what's very important, and I kind of want to like really, really emphasize all that while being on here with you. None of the applications that we currently have, apart from a very specific sub branch of Android APS, which I'm not going to get into because I don't really know a lot about it. They do not learn. People talk about learn dynamic is F in IPs or the other apps and it's learning how you function and that kind of stuff. It doesn't learn it is not a machine learning thing. It doesn't do like neural networks. It doesn't do machine learning or artificial intelligence. What it does is it looks at your total daily delivery insulin right from between the past hour to up to 14 days in deferral different like weightings, right and it averages that basically and based on More or less on your use insulin usage use stuff. Yes to decide how to doesn't. Exactly right. It doesn't learn in any kind of way. Yeah. And also, if you jump on to the app, and you want to toggle on the dynamic, it'll actually tell you the first 24 hours, it can't do it, because it doesn't have enough data. So
Scott Benner 1:00:19
I want to be clear, too, I don't think auto tunes on Ardennes. I just wanted to have a conversation, but You scared me enough that I'll double check. I'm sorry. No, no, no, not scared in a bad way. So let me ask a different question about IEPs. Yes. What about the people I've had one of them on here, who tells me I'm on IEP s, I don't even bother bolusing for meals, how I can't figure that one out. I
Deniz 1:00:44
can't really tell you how they do it. A lot of the people that do that they have very, very aggressive settings. Right. And so they may run like may or may not run into specific issues around like, you know, unannounced exercise. So if you just like, give me a bunch of insulin, because it's sense that you were like eating and then suddenly you decide to oh, you know what, I'm, I'm gonna go to the gym after all right? So they might have to cover all the iob. So the sorry, the insulin on board with a quick snack or whatever. A lot of the people that also do focus looping, have a long history of basically diabetes, and they have fine tuned the living s out of their settings. Yeah. So a lot of people hear about these kinds of algorithms. And then IPS is like the only one they hear about these kinds of apps. And then they hear about certain people that you know, they are like FCL, so full closed loop, and they don't Bolus they just start eating and the app takes care of that. And then they go like, I want that. Yeah, it doesn't work that way. It's basically like you're saying, you're looking at the sky, and you seeing an aeroplane and you go, oh, I want to fly that and expecting to just because you like board a 747 you can just fight. It doesn't work that way. It takes a deck and figure it out. Yeah, it takes a decade and you know, a long time educating yourself and becoming a pilot and getting a license and you know, getting trained on that kind of stuff. And it's similar on that with FCL. What I personally do, I'm not gonna lie, I'm not FCL, right. And by any means, I might or might not announce my meals. So sometimes I don't really feel like it. Sometimes I put in something, it's all it's always eyeballed. Right. I don't really weigh that much of my stuff. Yeah. And I do a Pre-Bolus every single time. So I do Pre-Bolus. But I will only do Pre-Bolus If it's a bigger meal. So if I just I don't know, if I just want to have an apple, which is between 15 to 30 grams of carbs, depending on you know, the size of apple and how sweet it is. Yeah, I might not even announce it. I might not even Bolus food. But if I'm sitting at work, and I feel like oh my God, I need a coffee into Snickers because this problem I'm working on right now is really bad. I will give myself you know, one or two units just to like, get things going. And you know, that's how I use the app. So I'm kind of hands off, but I'm not entirely.
Scott Benner 1:02:53
It's interesting to hear you talk about it the way I think about it, you know, like get things going throw some insulin in there, get it on our site, like, you know, that kind of stuff. Yeah, it's, I think how you have to think about it. I had one other question about this. Sure. I find it it heavily manages with boluses. And taking away Basal Yeah, but I can see long segments of zero Basal with
Deniz 1:03:16
good blood sugars. That's because how the algorithm which which is the the so it's the RF algorithm, which comes from an application you might or might not know, it's called the Open APS algorithm, invented by Dana Lewis and Scott Lybrand.
Scott Benner 1:03:29
They found them I guess, years ago. Yes. Okay. So it
Deniz 1:03:33
basically uses a version of that heavily adjusted and heavily built on like stuff on that. But it's like, the basic algorithm, I want to say is RF and, or if that's the thing that I explained earlier, which is like, it takes certain metrics every five minutes, and it does like those five predictions, and then it depending on certain conditions of those predictions, it does averages of those predictions. And then it comes out with like the quote unquote, final prediction, and then it goes based on that. And that entire algorithm is heavily based on Super micro Bolus. So and that's why you see a lot of like, timespans during the day where where the user might not be getting, like basil. Yeah, but that's usually around glucose fluctuation and usually also involves food. So for example, you like when I go to bed? I don't have an SMB between like midnight and 6am. Yeah, I only have a slight I only have like slight temporary basil adjustments operates maybe, but I usually don't get an SMB. But the minute I wake up and then have a coffee, and I usually spike quite badly on coffee, even though I drink it black or just like splash of milk. I see SMBs going in, boom, boom, boom, boom, boom. But that's just the way the algorithm works. Yeah, the algorithm basically decides on is it okay if I just do a mild, temporary Basal, so mild increase of the profile bezel, but do I need to give a Supermicro Bolus? And then also there's this thing with orif, which is Like, I don't want to say like this, but I'm gonna say it. It kind of borrows basil. But but not that, that you're not getting insulin, but it basically looks at your current basil. And then depending on certain settings, it looks at like what is your basil profile right now and what may be in so and so many minutes, and it kind of takes that number as a basis for the calculations. And that's why it's so super important than sort of swearing. But it really is important that you have a really, really good Basal profile, even though you may not be seeing Basal being dosed. Because it takes that number as like a calculation basis. And that's why I was saying don't use auditing, because it keeps changing that basis.
Scott Benner 1:05:36
Basically, when it gives you one of those super micro boluses. It's already thinking about here, take what you need, plus let me throw some of this basil into and then it'll manage backwards with a lower basil.
Deniz 1:05:47
To an extent to an extent, it'll often do like a temporary Basil of zero. So, like, you would call it zero tamping out or zero tamping because he kind of knows, okay, you are currently on one unit of Basal for the current hour, and you know, you need this much insulin, so I'm going to Temp Basal you zero for the next seven so many minutes, because I gave you this much insulin. And then if you start if you if you rise more and more and more, because maybe you've we've ate something or whatever it factors other things in and then it might may give you more insulin. But if it just gives you a correction, for example, and it, it may take that away, it's very math heavy, and it's a lot of calculations in the background, you know, and I don't want to like say false things. To go back to your question, I'm sorry, I'm kind of going over things, you're fine. It is a very normal thing to be seeing, like a Bolus Basal distribution of around like, I don't know, like 1010 to 90, or like 15 to 85. I also want to add that personal side note here, and to the listeners or whatever, if you've got an endo, and you're on one of these systems, or if you even if you're on oh five, and the end goes like you need a Basal Bolus distribution of 5050. Tell him to himself, because that is such an antiquated, like, way of thinking about this, because at the end of the day, this is insulin in your body. And you as a healthy person, your pancreas doesn't think like, oh, well, I'm going to give Scott points something of basil now. And now he just stuffed a doughnut in his face. And now I'm gonna give him a Bolus, it'll just secrete insulin, right? Personally, I think that we really need to stop thinking about like, things like like that and try to basically apply thinking of like a healthy pancreas to diabetics, right? It is insulin, you're in your body and you need insulin in your body. And we just make up these, these these things in these systems to like, make it easier for diabetics. And like the people that you know, go through it, but still it's, it's it's insulin, even
Scott Benner 1:07:32
when you talk about Omnipod, five, like when you first started up, they want you like 5050, but within 36 to 48 hours the pumps make it'll change completely different decisions that exactly don't look anything like that. But it means that on day one, yep. And you're right, as far as antiquated, goes, it's just the way that people like you mentioned earlier, I was over basil, when you were with an older doctor, he had your basil up high, because that's how they used to think about it. Like we'll give him extra basil, because we know they're not going to Bolus for their food, like and then all of a sudden that becomes like a rule. And no one knows how it became a rule. You know what I mean? And then Yep, on and on and on. But these algorithms are not like you're right, like the settings have to be right. And they need the autonomy to work within the good setting. But then the ratio in which you get insulin from Bolus to Basal, it could look nonsensical to you like to the naked eye. But it's working. It's so yeah,
Deniz 1:08:26
sometimes I think about like apps like IPs or loop or Android APS, right? Because they may do some things differently. But you know, ballpark, they're more or less the same. Yeah, I sometimes think about them, like, like a German Shepherd on my site, but on a leash. Right? He might bark at you. And if I if I let it go run, it might have to do for me, or it might, you know, do do aggressive things, if I let it do it, right. But if I say here, and if as I come, it's gonna come back, right? Because it's a very, very well trained German Shepherd on my leash basically. And it's super important that I kind of let it run and let it roam to an to an extent, but also to kind of know what is happening. That's that's this. That's the thing. And that's also why IPS is a very non beginner friendly application in my in my personal opinion, and why beginners shouldn't be getting onto the application, despite certain issues with with that whole ecosystem right now. Because essentially, you need to really understand diabetes well, because as a new beginner, especially with things like dynamic ISF, and dynamic harp ratios, and auto sense adjusting stuff for you, you might actually like you might not be realizing if things are actually going wrong. Or if the app is behaving the way it's behaving like the amount of people that come to the loop and learn group and go like it's taking basil away right now, but I am at 220 Why is it doing that? And then you go like, Yeah, but it's just given you like 10 SMBs over the past 50 minutes. Yeah, right. So you got your answer, but it's taken Basal away. I need my I need my basil. No. You need to understand how it works. And if, and I don't want to say like, you know, like, I don't want to sound like a teacher, you know, pointing the finger up. But it's important that people understand what they kind of use. Because with these types of applications, you know, it's yeah, they do give you insulin right. And you kind of need to understand that it's pretty important. So, yeah,
Scott Benner 1:10:18
I agree. I do see once in a while, if, if Arden gets a stuck higher blood sugar, yep. If you manually push the Basal even sometimes just for 20 minutes, you can break that high blood sugar without causing a low. And if you left it alone, it'll stay stuck there. So but it's, it's a very infrequent thing that I can't put my finger on exactly when it's happening, or why it's happening. It's just it happens. Sometimes you don't I mean,
Deniz 1:10:46
usually, when I go hypo on on this application, it's when I think I'm smarter than Okay, when I look at it, and I see, okay, it just gave me six SMBs. And I have like, 15 grams of carbs on board. But I'm, I'm already at two point something iob. And I decide like, you know, I'm at 161, I'm gonna give like half a unit. And then I do stuff. And then like, you know, 30 minutes later, I'm suddenly like, two arrows that like double arrows down. Yeah. And I'm like, Oh, dang, yeah, I shouldn't have done that half unit. I shouldn't have I should have known better. And, and it's the funny thing. I know how this works. And I still fall victim to that kind of thinking sometimes. And then I just give the half unit. And then you know, then you have like a sip of juice, or I don't know, right. But it's it's a human thing. I think it's like, I am the human here. I know. I know. I know.
Scott Benner 1:11:34
I'll figure it out. And then it's like, no, you are wrong. Yeah, exactly. Then this has been terrific. I'd like to, at some point in the future to talk like more nuts and bolts about how the algorithm works. Oh, sure. Yeah. But for now, this was this was really good. Did we miss anything that you want to talk about? I mean, we started off very oddly talking about your relationship with your parents, which I didn't think was going to happen at all. And I think we've gone on a little bit of a journey. So I feel like we've done a good job.
Deniz 1:11:58
We did. Yeah, we did we Yeah, no, I don't know if I may plug them. I already plugged them before, but I'm gonna say it again. If you guys like if there are guys out there, they want to get into DIY looping with on iOS, because it's kind of iOS centric, but we help on all systems. There's the loop and they're a Facebook group. There's also websites, looping learn.org, we're happy bunch of people, from all timezones all around the world. So we are literally 24/7 365. Yeah, around questions. We also provide much of the like built infrastructure for iOS loop, and also for IPs. So if you're building these kinds of apps, you're using tools that we provide on like a volunteer basis. If I also may plug in other organization, if you want to donate and help out people, I may ask to donate for the night Scout foundation. Yeah, a lot of people in the DIY space know Nightscout. Because it's a cool tool that, you know, you can view sugars on and you know, use a CGM data. And if you're on one of these apps, you can also see the insulin going in. But what many don't know is that the NSF isn't just, you know, keeping the Nightscout ecosystem alive. They also, you know, pay for, like help pay developers pay for, like testing devices. So for example, I know, I know, developer that got an iPhone, you know, got some money for an iPhone to test things by the NSF. I was given some money to go to conference in San Diego last November by the NSF. So if there are people out there that can spare $1, to donate it to the ISF. Right? That's a cool thing for us. And apart from that, no, I don't have any more things to say, Man, I really enjoyed being here.
Scott Benner 1:13:31
I did, too. i It's funny how much of what we use, I don't even understand. Like, I know, that's odd. Like, I know, I pay somebody every month to house something. I don't even know what it is, like information somewhere in this mystical, you could use this one or that one. I'm like, I don't know what to do. Like, you didn't mean like, it's just it's working. So I'm not touching it. But But I don't know, like, I know how important like the night Scout foundation is. I don't know why. It's funny. Like I'm like, I mean, I know it, we need it to work. And but it's the give and take between having something centralized and controlled by a company. And how important that is for so many different ideas. But if you do it this way, and it's you know, a community based and open source, you know, well, then you keep the, you know, everything keeps moving forward, because it's not a business. You're not like, Oh, we got there, we're selling it people like it, it's good. Leave it like this, you're like, oh, let's make it better. Let's improve. Let's hear from other people, to both aspects of it, have real positives, and then they both have negatives, too. If we just said to a company, just go by that just go take this algorithm, make it make a pump with it. Right? I bet you I know about where my data is being housed, and like I'd understand what was happening then that would be very smooth for me. Yeah, but they'd probably also sit on the algorithm for five years and not do anything with it. And so you don't mean like it's also
Deniz 1:14:54
I would have a very funny story. I don't think we have enough time for it. But I was at this conference last November, and a guy from a Tronic was there. And he was basically presenting the, I think they call like, something about about miss meals, I don't want to mispronounce the name they have for it, right. But the 780 basically has like a missed meal function. And another very known, dry veteran went up to him and asked him, hey, what you presented today, it sounds a whole lot like the unannounced meal feature in in the aura algorithm. He didn't say much. But the face that he gave, and the expression basically said a lot, right. And we were standing in like a crowd. And you know, everyone kind of like just chuckled in you, right? It was almost kind of those kinds of moments where you go like, Ah, okay, yeah,
Scott Benner 1:15:44
I there's got to be a blend of Yeah, I don't know what the answer is, obviously, I'm pretty far on the outside of it. But I think of my job around algorithms, like Do It Yourself algorithms is like, I think I'm doing the thing I can do for it, which is to let people talk about it and let people hear about it. I mean, there's this one thing, I'm always disappointed at the limitations of Facebook, because I see like looping learn that Facebook group is a great example. If there was a way that I could start a suite of Facebook groups, and fold things not that they would want me to, but like just supposing out loud, if you could have, you know, how the you remember the old, just how old boards used to work link, you know, there was a tree on the left, and it's like, Hey, we're gonna talk about black and this one white, and this one green in this one purple and this one. And you could jump if you could do that. And Facebook, like a message board could like a proper message, oh, my god, like a message board, then you could fold these things together. And then you would have like, not for I mean, Lupin learns a great Facebook group, but you're not touching the number of people I am and the kind of traffic I am like, imagine if those conversations could happen in front of more people how much more quickly it might expand. And but that doesn't exist. So like, everything's a given take, I don't know, I just went down a weird road there. But everything's that give and take. And there's moments where I wish we could go faster in some spots. And there's moments and when I wish there was more money involved in some things. And I mean, like, organizational structured money, and you know, that kind of thinking, anyway, it's all working pretty well. It's hard to argue with it.
Deniz 1:17:19
But yeah, it's working pretty well. And you know, all the money. It always comes with, like strings attached. Right. So we, the thing is, I think what we got right now it works pretty well. And I've got this for 27 years now Arden's going on I don't know, close to 20, I guess. Oh, God, 18 or something. Anyways, yeah, what I'm trying to make is I was diagnosed, like in the last millennia, and I was told in the next five years, there's a cure. And I've talked to so many diabetics, diabetics that had diabetes for like, 6065 years. And you know, even back then they were told guys in five to 10 years, there's going to be cure, it's common. So, right. So it's what we got here is pretty awesome. And it's amazing, like, the disk space I am in is basically like, you know, improved and driven and by volunteers, and that put like, countless hours every week into this. And I hope it stays healthy for a long time until it's not needed anymore. Essentially.
Scott Benner 1:18:16
Oh, damn, listen, I'll go through them all. Medtronic 670 G tandem control, like QX two Omnipod, five, loop Iaps you know, Android all Android API.
Deniz 1:18:28
All of it. At Domino's. I let the bionic pelgrane Do the very the
Scott Benner 1:18:33
things. As long as you understand basic concepts of diabetes have access to insulin, a CGM. The stories about people like my friend Mike, that they're not going to exist anymore. Like this is this is it? You know, like we're, we're running at this point. Yeah. Yeah, it's fantastic. All right. I'll let you go. I don't what time is it? Where you are?
Deniz 1:18:54
It's three past 831
Scott Benner 1:18:58
You're gonna fall asleep and you're very old. Oh,
Deniz 1:19:00
no, I'm gonna head to the gym now. And then when I'm back, I'm gonna eat and then I'm gonna go to bed. Because I've just I've just sat on a podcast with you for two hours. I gotta move. You gotta get oh yeah.
Scott Benner 1:19:11
As soon as I get done speaking to hold on for me one second.
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#1242 Type Two Stories: More Jon
Episode 1242: Jon's Journey with Open Source Loop Systems
Jon shares his transformative journey with open source loop systems for diabetes management. This episode covers his transition from long-acting insulin to using a pump, the impact of continuous glucose monitoring, and the role of community support. Learn how advanced diabetes management techniques can revolutionize your daily routine and improve your quality of life.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to episode 1242 of the Juicebox Podcast.
Today I'll be speaking with a returning guest. This is John from Episode 688 type two stories, John. And John's here to give us an update on what's been going on. It's significant, you're gonna find this one crazy inspirational, I think, but let's make sure you heard 688 first because John's got quite a story. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin. Maybe you'd like to save 30% off your entire cart at cozy earth.com I'm talking about the clothing, the sheets, the towels and everything else. Go there, fill up that cart type in the offer code juicebox at checkout and you will save 30% at cozy earth.com. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. If you're looking for community go check out my private Facebook group Juicebox Podcast type one diabetes, but John's over there. He's type two. There's type ones there's caregivers gestational moody doesn't matter to us. This episode of The Juicebox Podcast is sponsored by the ever sent CGM and implantable six month sensor is what you get with ever since. But you get so much more exceptional and consistent accuracy over six months, and distinct on body vibe alerts when you're high or low. On body vibe alerts. You don't even know what that means to you. Ever since cgm.com/juicebox, go find out. Today's episode of The Juicebox Podcast is sponsored by Omni pod and the Omni pod five, learn more and get started today at Omni pod.com/juicebox. Hi,
Jon 2:12
it's good to be recording with against God. I'm John kafele. and I have type two diabetes. I've had two type two diabetes for decades, three or more decades, I've been using insulin for almost 20 years. And I've been able to turn around and manage my type two diabetes and put it into remission at the age starting at the age of 60. I'm 63. As of last week, I told my story originally two years ago in Episode 688. And this is a an update on I guess what I'm doing and things I've learned. Thank you for the opportunity to share. Now
Scott Benner 2:51
it's my pleasure, and you have a lot to update us on. So that's why I was super excited to talk to you. And at some point, we're gonna get to the photo that you sent me to get me ready for this episode. That was a really like eye opening. I'll tell people more about it later. But yeah, please check John out on episode 688. And I don't know, I think these will stand alone pretty well. But if you really want to hear the whole story straight through, I think that would be the way to go. John, I'm gonna start off with something out of left field for you. What would you say if I told you that, when I released the type two Pro Tip series, I lost hundreds of listeners,
Jon 3:26
I would say that that's very unfortunate. And that a big goal I have had is to close the gap between type one and type two, by recognizing at least that type twos that use insulin are part of being bold with insulin, and that nobody else's struggles diminish your own. And that in commonality and a common cause we find strength. So
Scott Benner 3:56
I expected a little bit of blowback like a tiny bit. And I don't want you to get me wrong, I didn't lose like a large percentage of the audience or anything like that. But I lost about 400 listeners in the snap of a finger by putting up type two pro tip. And that was it. And it may be the whole series may have may have been like seven or eight episodes long. And I believe it was spread out over seven or eight weeks. So in a week where I put out five episodes, one of them was an addition to the type two Pro Tip series. And I even came at it by saying to people like look, you have type one diabetes, the show obviously is valuable for you. Maybe this information can be valuable for someone else, you know, with type two, and I thought the show would be a good way to get that information around because historically, I've watched a lot of people try to help people with type two diabetes and not go anywhere. And often. You see companies or organizations sometimes manufacturers, sometimes pharma companies, they try to kind of create a type to community and it just doesn't work over and over again. So I thought, oh backdoored, I'll come in through the type ones who already know this information is good. I'll go share it with my, you know, uncle who has type two. And I'm sure some people did that. And it's fantastic. And I actually know, personally of people that it's helped. But man, I woke up the next day, and I was like, oh, geez, it's not going to be easy to get those 400 people back, like, it's hard to get a person to listen to a podcast and to get 400 of them is a bit of a hump. But anyway, nevertheless, I persist. And here you are, again. I'm not. I'm not given up, I believe, like you that there's commonality between people who use insulin, have type two diabetes and people with type one.
Jon 5:40
Absolutely Good, good. We're stronger together.
Scott Benner 5:44
I don't see another way around it. But I'm kind of leading into it this way, so that you can maybe recap your first episode in a couple of minutes by telling us how you got to hear meaning knowing about the podcast?
Jon 5:56
Well, I've been taking insulin for over 17 years. And a big part of the story is that trying to form my thoughts here, long acting insulin for type two diabetics, people with type two diabetes can be an imprisonment of sorts, when you establish an increasing Basal rate through the use of something especially like to see but with a 42 hour half life, you and you don't modify your behaviors to lower that Basal rate, the amount of insulin that covers inappropriate eating, in the evening, eating a pizza needs to be balanced by the same amount of eating in the morning. And in the afternoon. So what you end up in is a trap you can't get out of and you can't try to modify your behaviors part of the day, you have to modify it 24 hours a day. Does that make sense? Yeah. No, it does. So I asked my GPS for over the years, I moved a lot. I've had different doctors and I would always ask the GP, the general practitioner, I would like to have Basal insulin so I can address mealtime, increases in my glucose and not be trapped in this higher increasing basil. I started at 40, I ended up at 140 and 140 units is a lot of insulin, or at least for me, you know, it's different for different people, but it was a lot of insulin, want to be able to titrate that downwards to establish a real Basal and then use Bolus insulin. And they would never do it. Finally, the last up I got, he replaced a doctor that moved away. And he is my current general practitioner still. And I said to him the same thing, hey, I want Bolus since they always told me to go exercise and lose weight. You told that to a guy who has 500 plus pounds until that guy, two guys 370 pounds. It doesn't really matter. There's something else that needs to be addressed. But this guy told me almost flippantly, the best thing that has ever been said. He said, Ah, you should go see an endocrinologist. And so a month later, I saw Liz and Elizabeth Driscoll over here at Sentara in Charlottesville. And I told her that I wanted to have Bolus insulin. And she said, Yeah, where's Is this your current pharmacy? I'll do that right away. I should also point out the before that in the beginning of our meeting, I told her that I was interviewing her for a job to be my medical assistant, but that I was in charge, and I would be making all the decisions. But the she had the control over the medicine locker as it were, we had to get along. And she was going to, you know, prescribe the right stuff for
Scott Benner 8:36
me. Do you think you knew in that moment? That? I mean, you just kind of you kind of offhandedly said that a guy over 500 pounds doesn't just need to be told to exercise as if like what you're really missing is just a brisk walk. And so like, did you know there were other factors at play in your health? At that moment?
Jon 8:55
Oh, absolutely. You know, the thing is, carbohydrate and sugar addiction is a thing. And it doesn't mean you don't you know, I imagine even if you're a heroin addict, you probably know that the last thing you need to be doing is heroin. And you probably are very intimately familiar with the failures in your life it causes. And clearly a guy is 540 pounds and cannot perform basic hygienic tasks. is aware of that, right? Yeah. Is that addressing what you're asking? It
Scott Benner 9:24
does? Yeah, I just didn't know if you were blissfully unaware and just cruising alone, or if you were aware, but unable to adjust, painfully aware,
Jon 9:34
but deeply addicted and not given access to the types of care that were necessary to break me out of that. Okay. And part of it is I have a lot of resentment over having been prescribed long acting insulin in and then ever increasing amounts, because that really became a prison that I couldn't get out of, and then not being willing to prescribe me Bolus insulin and allow me as soon as I got Bolus, insulin, everything turned around. Now, of course that required me to make use of that, right? You can't just give them the Bolus insulin it changes. But I have the tools at that point. Okay. Yeah. So Liz is happy to work with me. And then she said the thing that changed my life, she said, Have you ever thought about a pump? And I laughed, and I said, I'm here trying to get Bolus insulin for the first time. And you're asking me a person with type two diabetes, you know, how about a pump? And in my mind is the Darth Vader, you know, huffing and puffing through the mass with tubes and steam? And she says, Well, no, there's also a tubeless pumps. By the time I got home from that appointment, I went to the pharmacy, I live in the country. So it's like 40 minutes to get home. But I went to the pharmacy picked up my insulin, I'm there with it. And the insolate rep calls me and says that I was on Medicaid at the time. And he says that, you know, we just had a change in Medicaid in the state of Virginia, and I'm sending you out a whole starter kit if your game for it. And I was like, Well, absolutely. And then everything changed. And I started open source iOS loop in a few weeks of that. So
Scott Benner 11:01
how did you get to that so quickly? I've been professionally
Jon 11:04
involved in open source my entire career. And so I've always been aware of other open source projects and things like that. I've been aware of diabetes. And so I knew there was an artificial pancreas stuff out there. I see. And so I was like, Are you kidding me? I've got the Bolus insulin. I've got the iPhone. I've got the compilers and things. I have the skills. Now I have going straight to the head. Yeah, here I go. Yeah. I'm going straight to the head of the class, baby. Yeah. Nice.
Scott Benner 11:27
Okay, so, Jesus, you use just Basal insulin for 17 years,
Jon 11:33
for 14 years or so. Okay. I can't nail down exactly when I started. It was somewhere in between 2004 and 2007. Plain smoke.
Scott Benner 11:42
I'm sorry, God, no, I
Jon 11:44
was just gonna say I went to a doctor's appointment and had had an eight one C test and it was 14.5. And the doctor is like, how do you I have a very busy career and was responsible for managing operations infrastructures for large internet sites and things like this. And which is like a 24/7 very demanding job. He said, How do you do it? Um, I don't know. And so he prescribed me the insulin and I remember I went back to get started with it. And he showed me to inject your my jeans and to reuse needles from day one. How about that? There you go. So what were you going to even ask him?
Scott Benner 12:16
I know, don't be sorry. I just I want to make sure that everyone understands that idea of this person. So plainspoken Lee, you're eating poorly. And you have type two diabetes, your body cannot keep up with what you're taking in. So they give you this Basal insulin. But then what happens is your your blood sugar start to come down and then your eating goes up, and then you end up with more insulin. Is it just keep perpetuating back and forth like that? Or no. This episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since cgm.com/juicebox. The ever since CGM is the only long term CGM with six months of real time glucose readings giving you more convenience, confidence and flexibility. And you didn't hear me wrong. I didn't say 14 days. I said six months. So if you're tired of changing your CGM sensor every week, you're tired of it falling off or the adhesive not lasting as long as it showed or the sensor failing before the time is up. If you're tired of all that, you really owe it to yourself to try the ever since CGM. Ever since cgm.com/juicebox, I'm here to tell you that if the hassle of changing your sensors multiple times a month is just more than you want to deal with. If you're tired of things falling off and not sticking or sticking too much or having to carry around a whole bunch of extra supplies in case something does fall off. Then taking a few minutes to check out ever since cgm.com/juice box might be the right thing for you. When you use my link. You're supporting the production of the podcast and helping to keep it free and plentiful. Ever since cgm.com/juicebox. The Fear Of Missing Out is overwhelming sometimes, but the fear of missing out on Omni pod. We don't want you to have that. A lot of people in my private Facebook group talk about their love for Omni pod five. Have you ever seen those posts and thought I wish I could have that experience with an insulin pump too? If you answered yes, you might be experiencing FOMO fear of missing out on Omni pod symptoms may include but of course you're not limited to wishing you could wear outfits without pockets and fantasizing about jumping into swimming pools without disconnecting from your insulin pump first. Maybe you're dreaming about walking past that doorknob or a handle on your dresser without getting your tubing caught. If you're having those dreams, good news, you don't have to suffer from FOMO any longer. You can see what you're missing by trying Omni pod five for yourself at my link, Omni pod.com/juice box, get started today with the Omni pod five Omni pod.com/juice box throw away your FOMO?
Jon 15:12
That's a good question. You know, one element of it is the insulin causes insulin resistance. And the more insulin you take, and the more food you can input, it's a cycle, you know, one feeds, it's a feedback loop that increases the amount of insulin you take for the amount of resistance you have and the amount of food you're eating. And as you turn one of those up, the others turn up with
Scott Benner 15:34
it. Do you mean that as you add Basal insulin, your body becomes less and less effective, and therefore you need more more the manmade Basal?
Jon 15:43
Well, that's part of it. Of course, in my case, in case I think, many I have an extreme eating disorder. And that is the number one propellant in my diabetes, okay? There's, there's genetic predispositions. There's economic and other access to food and things that happen and so forth. There's a lot of things in my case, it was a extreme district eating disorder related to you know, childhood trauma, blah, blah, blah. And it literally fed on itself. So the prison of long acting insulin for person and my condition is that it gives you a license to eat a large pizza for dinner. And to follow it up with big chocolaty treats and things like this. And what that eating is doing is it's creating dopamine releases that our guests just straight up like taking drugs, and it is taking a drug. It's the different method, right? And so you're addicted to that high, you're addicted to that. And so, you know, you hear about like, maybe you don't hear about it, but the idea is a person does is on heroin, and all of a sudden, everything's just hunky dory. Everything's absolutely wonderful in the world. Even if you're in an alley, you know, on a piss soaked mattress by a dumpster, everything becomes wonderful. And that's what food does to a person with my pathology. Gotcha. All right. Well, that was my history. And so if you eat that pizza and everything the next morning, you still have that high Basal rate.
Scott Benner 17:14
Yeah. And so almost functionally, what you think is like, so was there actually a time where your blood sugar was one of the reasons you finally could stop eating at the end of the day? Great. Like, I can't keep doing this. But then all of a sudden, the the insulin felt like a crutch. Or is that not right?
Jon 17:29
Insulin was always an longterm act long acting insulin was a enabler and a in trapper, does that?
Scott Benner 17:37
I think so. No, I think I understand I just, I just wanted you to really spell it out for me. So once you get a pump, and you get to an algorithm, and now you're covering your meals with Bolus insulin, how is that different from just basil?
Jon 17:52
I'll tell you what it was. And it was what I envisioned it would be all along, I remember, I'm an engineer, and so forth. So I have a very certain place on the spectrum with my mind. Once I had that tools in hand, I could see how much the foods I were eating, were directly impacting my glucose performance. So throughout my life, you know, and if you're not too, I can solve any problem. But if you're not driven to solve it, you're glib about it, right? So at one point, I convinced myself that sugar wasn't the problem. It was fat in foods and all these different things, right. And once I started taking Bolus insulin, and really paying attention to it as I do, I saw the effect of every single thing I put in my body. And I quickly realized that for me, grains were not helpful. Okay. And they're not. So I had a budget, right, I had a performance profile, I had a thing I was trying to do. And I was trying to reduce my overall use of insulin from the beginning. And I was trying to achieve at that point, I wasn't trying to achieve normoglycemic values, but I was trying to achieve achieve non life threatening values. Gotcha. And it happened very quickly, though. And I started realizing the different kinds of foods and the ways of eating that were harming me. And I just thought about, I was able to kick the drug, almost cold turkey, I remember it now. Like I thought, you know, I'll just have a sandwich in the middle of the day, just a nice sandwich with a lot of vegetables on it and some meat and just two pieces of bread that I'll dose for. And then what happened was, I realized that even though I could dose for those two pieces of bread, that they had a significant carbohydrate impact and long tail effect that I had to manage that I had to use more insulin to deal with, that I had to pay more attention to. And then it became evident to me that I could just have that vegetables with some meat on top of it and not have the other impact. And it just made more sense for me. Okay.
Scott Benner 19:49
It's interesting that you had that problem first. So I mean, would you consider this disorder lifelong?
Jon 19:54
It pretty much manifested by eight years of age. Okay, well, that yeah, pretty much lifelong.
Scott Benner 19:59
So My point is it's interesting that getting the pump, and I guess I'm assuming a glucose monitor as well. And then like, yes. Is that right?
Jon 20:09
I've been using Dexcom for a little over seven years. Yeah. So I've been using Dexcom for four years prior to being finally given Bolus insulin. It was just a waste. It was just a thing that would alarm all the time. I've gotten phone calls with friends. And they'd be like, Oh, that's your alarm. And I'd be like, Oh, whatever.
Scott Benner 20:27
So it's interesting, though, isn't it that you have the information? It didn't get you to change but then suddenly, once you had another tool, you were like, Oh, I eat the bread. My blood sugar goes up. I'm gonna stop eating the bread. Let's go. I'm on this journey. Do you don't know what pushed you in like over like, it sounds like you think it's the pump, but I don't understand why. No,
Jon 20:47
no, no one. One is observational. The Dexcom is observational. The insulin is interventional. Okay,
Scott Benner 20:54
so you felt more powerful with the the Yes, Bolus insulin, okay.
Jon 21:00
Yes. And it was also a way to get off of the long acting. Gotcha. All right, I understand. And the funny thing is, I didn't titrate the lung acting because I immediately recognized that a pump with its micro Bolus ng is Basal and Bolus. So okay, that was pretty cool. Right there, I was able to holistically I didn't have to titrate it was like, MBI. Right, right. I didn't have to work those against each other, or with each other.
Scott Benner 21:25
You see the impacts, you keep you stay, it's amazing, you're able to just stay on that new path, which is laudable, it's fantastic. But you stay on that new path. And we are in there, do you find the podcast immediately? Okay.
Jon 21:39
Like, immediately, you know, you got search tools, you got Facebook, you can search there, you can search Google, you can do stuff. So you start saying like, who knows, you know, what are the outlets? Where do you learn about how to use insulin? Actually, literally, my thing was, I've got this stuff, how do I learn how to use it. And I'm very antagonistic to anybody that has anything to sell. It's just raises my spidey sense in a big way. And so when people have a miracle diet, or they want to sell you cinnamon, or they want to tell you how you need to do it, it puts me off because as you can tell, I'm pretty much think I know everything already. And I'm very, you know, engaged. And I want to form my own opinions and stuff. And I don't want to just buy a cure. And so social media is a great place. I've been on social media all my life, since the Usenet and things back in the whale days, I just wanted to find a place where I could talk to people that were doing the same things. And when you look for type two groups, on Facebook, I'm a middleman. So I don't Twitter or ticker totter talker much right? Um, looking on Facebook for groups, and every type two group I found was part of a company and had a thing that they wanted to do with you at all. And then your group was about being bold with insulin. And that made a lot of sense to me. And I reached out to you very early. And I said, Help me, what the hell do I do with this? And you know, you gave me some insight and suggested I read the group and do more there. And I did. And then before long, I actually reached out to you. And I said, I wanted to start a type two group. And you suggested that that would be a great thing. But let me know that you were also working on providing type two participation in the group and support in the group. And, and I was like, You know what, I'm just gonna wait and see where that goes. So I'm honored to have been an IRL monitor have been an early guest, and I'm honored to be part of the group. And it's really cool to be here again, with you, Scott,
Scott Benner 23:32
I appreciate that. You're also you're one of the I would say one of the key reasons that the group attracts type twos at this point, too, because you've been so open and clear about what you've been through. So I'd like to do that here, too. I'd like to talk a little bit about what happens. I think maybe we should jump into like the weight loss journey. Like how long does that go on for like, I'm right to say that you're basically a pretty low carb guy, right. And that's been since you found the pumping. That's
Jon 24:03
the funny thing. It's, you know, it's not overnight, right? Okay. And so even before getting the insulin, I was trying to modify my behaviors. And in a year or two before I finally got a hold of that the Bolus insulin, I was actually deeply hypo about a half a dozen times. The rescue squad had to come out four times and they transported me to the hospital twice. And that was because I was taking a lot of insulin and trying to eat a lot less food. And there's there's the prison you see, I'm saying, and so I've been making moves in the right direction all my life. When I was 3330 years ago, I lost 200 pounds, and I reduced from 540 to about 343 50. And then I vacillated between that range 373 50 down to 280, like five times in my life. And so the fact was, I knew how to moderate my mind Hey viewers, but when I got to 270, I couldn't lose any more weight. And so then you just kind of give up, right. And that was a thing that happened. But what I wanted to address is when I got the ball, since when it did turn around overnight, it was a sequence of continuing refinements and adapt adaptations. Okay. And so I got my a one C down from a nine, four with like, no time and range to a six with, you know, 80%, and range. And I've been under 5% for almost two years. Wow. And my standard deviation is under 15. And my time and range, my personal range that I track a 70 to 120. And I achieve mid 90s presets all the time, pretty much. The thing that screws that up is Dexcom, mankind doesn't have a way to measure glucose, whether it's a one C or your finger stick or whatever, it's always an approximation. I'm fond of saying if I became a billionaire, I would focus on not a cure for anything, but how to measure diagnostics, accurate diagnostics, right? Because more so than a cure for diabetes, or a cure for any other thing is effective treatment. That's the thing that we can do now. So that's a passion of mine. measurements include a one C and your data from your Dexcom, you have to take it all together as a bigger picture. You know, I'm saying I achieve those things. But it took a long time. It was quick. But I mean, it wasn't overnight, right? It was a continual process of refinement. And recently, in the last two months or a little bit more by diet bestie and I have have eliminated snacking. And that has had a significant improvement. So even when I was in these numbers, removing the snacking is caused an increase in weight loss and a reduction in my waist size.
Scott Benner 26:45
Well, how many calories do you think you take in a day? Ha.
Jon 26:49
You know, when I started this, I determined only to count carbs, and measure glucose and I felt everything else would fall into place. And that was largely true, you get to a point of diminishing returns on one angle of attack. And you have to add others. Yeah. So now I'm looking at actually, there's other elements of what's going on is I found that my beta cell function was at the level of a person with type one diabetes, it was insufficient to support life. At this stage of the game, I was able to turn it around. And now my latest C peptide shows me at the at the low end of normal. And so you know, they say do something about your type two diabetes now before it's too late. And what I'll tell you is it's never too late. How
Scott Benner 27:36
much insulin do you use today? Like your total daily dose? Versus the first day you put on that pump? Do you like just vaguely you don't need to be exact. But what do you think the difference is?
Jon 27:48
I'll tell you that the day before I put on that pump, I was running 140 units, which receiver, I can't remember where it was immediately, but I got it down to half of that pretty darn quickly, very quickly. And then getting it down the next half likes from 72. Right now my my total daily usage of insulin Bolus and basil combined, is running about 35 units a day. And that's been the case for a few months.
Scott Benner 28:16
Yeah, that's a quarter of a quarter of the amount of that that Basal insulin from beginning of your story. And the increased
Jon 28:23
the larger part of that insulin right when it was at the higher end resulted in things like a 9.4 a one C with no time and rage. And all of that to the to the numbers I have. So it's not even, you can't even do the simple math of one quarter of the insulin right? You're talking about orders of magnitude results. Yeah,
Scott Benner 28:43
I mean, being in the situation you were in and just giving you Basal insulin is really it's almost cruel, honestly, because it's yes, yeah, give me it's slowing down your demise, but it's not really doing anything to stop it. It's just, it's now just crawling forward a little slower than it did the day before.
Jon 28:58
I strongly believe that when a person is with type two diabetes is introduced insulin, it should be done in a very focused manner with reviews. And not just as like go take this and go away and die slowly. It should be here this is now let's do behavioral modifications and other things so that you can reduce the amount of insulin we have to give you right now and also people with type two diabetes who are on insulin should be introduced Bolus insulin as soon as possible.
Scott Benner 29:29
Okay. Do you have any idea what shifted inside of you to help with the addiction to the sugar?
Jon 29:35
I think that my ability to escape that happened much earlier than my access to the tools to enable
Scott Benner 29:42
it. Oh, okay. Oh, so it's not as it's not as instantaneous as the story makes it seemed you had made the decision but didn't know how to do it.
Jon 29:51
Well, that's what I tried to keep there with like, the year before getting it having six extreme hypose Yeah, and And and all that experience. I mean, that was me trying to change my behaviors, but getting slapped into the hypo lows by the insulin
Scott Benner 30:07
I say, Okay, can you put a weight on that? That? Let's go to when you I don't know you found the podcast like what do you weigh that around that time? 350 pounds 350. So you had gotten off 200 pounds on your own? Yeah. For like 30 years for 30 years. So you were up to five something? You lost 200 You maintain that for 30 years at this like 350 ish range?
Jon 30:31
No, actually I went from I went from 350 to 280. Okay, five times. Oh,
Scott Benner 30:36
so you would bounce in over those 30 years, you'd bounce from 350 to 280?
Jon 30:40
Yeah, like about five times four or five times? How did you get from 350 to 280. Same way I got from 540 to 350 calorie deficit for the most part, but also swimming. To get the first 200 pounds. I went and swam a mile a day three times a week at the gym here at University of Virginia. And that was a big part of it. Swimming was my thing. When I was a kid, I had some training.
Scott Benner 31:06
John, can I take a detour for a second? Yes, please. What's it like jumping into a public pool when you're 550 pounds?
Jon 31:14
That's a very good question. A little bit more background about myself. And I touched on this maybe even more depth in my first episode. I was raised institutionalized, I'm diagnosed autistic, and so forth and things. And so it was a pretty weird childhood. And when I was about 17, and living on my own on the road hitchhiking was when I just realized that I'll take my shirt off, if I want to take my shirt off, and I was, you know, over 350 pounds at that point. And I don't care what other people mock me or say about me anymore, because it's just about them. And you've probably heard the concept of flying your freak flag. Hi.
Scott Benner 31:54
I'm sorry, that was your vibe.
Jon 31:56
That was my vibe is you know what? I'm done apologizing for bap. Now, I didn't give myself that break internally as much. But I just couldn't live. I couldn't maintain hiding behind the couch and being afraid of the other
Scott Benner 32:09
kids like when I was younger, but still it made you feel a certain way internally. It was liberating,
Jon 32:15
if that's what you mean. Yeah. Or you mean the shame or something? Yeah, I had to get over that. So you know what, I got the pool I swam. And I'll tell you a funny thing. I was involved in a faculty council that met with the the administrative vice president of the university who is really the BIOS Reading University. And a guy that says, Hey, I see you in the pool all the time. And it's really impressive what you do. And that kind of feedback is rewarding, right? And I'll tell you what, man, I swim my first lap to my last lap at the same speeds going that with that much weight. Wow, it was rewarding. And you know what, when I get to share my successes in the group, it's very rewarding that people exhort me and congratulate me. But more so you know, it's about the lurkers. Right. And so I liked the idea that may be in the group, I can carry a bit of a message for the 40,000 that aren't posting every day. Yeah. And that I was making see that. Go ahead. No, I
Scott Benner 33:11
was gonna tell you that. I do like a weight loss diary, since I started using a GLP last year. And it's not talked about online, nobody brings it up. Like I don't hear from people like, Oh, I'm liking it or anything, but I get a lot of private notes about it. Like this made me feel good. Or I connected with what you said here, or you motivated me to do this or that like, but it's not online, like, whereas with the podcasts when it's about diabetes, you'll get like, people will be out front about it. They're just like, Oh, I heard this episode was really valuable blob above like, they're, they're not afraid to do that. And then like they'll jump on, but no one's mentioned it publicly. But it gets a lot of like private notes. I just think it's one of those things that generally speaking, I don't know that everybody's looking to talk about in public. It's just, it's just interesting. When you put out content the way I do, and you get to watch how people interact with it. It's a real learning experience, to see how people think and feel and what they what they think is important versus what they'll say out loud, sometimes. Just very interesting. I'm sorry, I cut you off. I didn't mean to. No, you
Jon 34:18
did not at all. And that's that's an interesting dynamic that I'm impressed by your ability to deal with the wide variety of people that come to your door, our char tribe. You're very inviting and open to people you tolerate quite a bit. But you work really hard to keep the conversation positive. And so you know what, there's people that are actively participating and everybody that's actively participating, y'all are addressing and speaking to a much larger audience.
Scott Benner 34:48
Yeah, yeah, you don't, you'll never know it. Like, I'll even never know to the extent that it happens, but I get enough feedback to realize Sit does like just to hear from somebody who said, Hey, I've lost 40 pounds since you started your weight loss journey, and I started mine because of you. And I think I don't know this person's name. I've never heard them before. I don't recognize them. I go to my group, I they're not in the group. And I'm like, wow, it's fascinating. Like I just said something positive, maybe hopeful. And I just put it out in the world. And then that person lost 40 pounds. It's crazy, isn't it? It's a message in a bottle. Yeah, man, no kidding gets a really nice way to think of it. Okay, so you mess around between 350 and 280, for 30 years or so. Swimming, not swimming back and forth. I guess the battle between the food and the exercise goes back and forth. I would also imagine that getting to 250 is great. But you're still standing there. 250 go, Oh, my God, I still have weight to lose. Like this is like is my whole goddamn life. Right, like, and so where does it really just start? Like, downhill skiing for you? Like, where do you just like, Where does it start? Where you're like, I'm on this path, and I almost can't get off it now to where you are right now. Tell people what you weigh. Right now. I
Jon 36:06
weighed this morning, I weighed 250.9 pounds on the scale. I've been right at 250 for a couple of weeks now. And
Scott Benner 36:13
this for you a weight is you think this is a good weight for you. Do you think there's more? Do you think you're too thin? What's your opinion of of your body right now?
Jon 36:22
And we'll talk about that surgery and bone. I think yeah, I weigh less now than I did when I was 15 years old. Wow. About that. That's my goal. I have stage one obesity right now. At my height, I was stage six plus, and I had a body mass index about 66. Okay. And now it's about 33. You know, it's imperfect math, right? Unless you do that thing where you get in a sling and go into a saltwater bath. And they weigh you and all that. But the math says, Yeah, so the math says I'm about 33, which puts me in stage one obesity. And my goal is to lose another 30 pounds and become overweight. You like the IRA, I already have that. My goal is to be overweight
Scott Benner 37:09
chested. I've had that goal. So how tall are you just for context for people?
Jon 37:13
I'm six foot one, okay. Or as I like to say, I'm six foot one and a half.
Scott Benner 37:18
I listen, if I was six foot one and a half, I'd added it to Okay.
Jon 37:23
I mean, it affects the BMI calculation and makes it a bit easier.
Scott Benner 37:28
Didn't get shorter when you lost weight. I've seen people lose show shoe sizes.
Jon 37:33
I would think you'd get taller when you lose weight because of less vertical compression.
Scott Benner 37:38
Oh, John, you're saying something there? I was thinking about literally fat under your feet. Well,
Jon 37:43
that's interesting. I'll tell you a thing to maybe interesting is I ended up essentially crippling myself and I use a shower in a chair in the shower, I use a chair in the kitchen, I use electric cars at the store. But I can swim a mile every day before surgery for two months before surgery. I'll swim a mile a day, six days a week. And how do you do that? Right? Well, it's the zero G thing. It's taking the compression off of the spine. And so I'm trying to make that better. I also recently had a comment, I'm glad to be able to get this in here. I had a conversation with my GP was only about two or three weeks ago. And I said we're we need to reevaluate our relationship. And we need to have a relationship where you understand that you are working for me and that I'm in charge. So I had that same conversation with him. And he was happy to do it based on I guess, you know, the results. Yeah. And I said, the first thing I want to do is I want to remove statins, statin from my portfolio. And I said I'd like your advice on how to titrate that how to reduce that dosage. And he said, You know what, let's just take it away completely. And we'll see what's up in two months. And then if we want to, we'll titrate upwards from the minimum dosage and I was like, Yeah, we're, we're, we're we're doing it. So the the reduction of the statins may help with muscular issues.
Scott Benner 38:58
I was gonna say tell people why so we will but let's go backwards a little bit. You've crippled yourself How could go through that?
Jon 39:05
Where you can't wait 540 pounds. And you have what passes for inactive life, right work and all this kind of stuff and it not have issues. A long, long time ago, I had, I think it was an MRI or something. And they said I had compression fractures in the spine. And like, kind of, of course, and so you can't weigh that much. Now. I think we're getting close to the surgery now because after losing all that weight I was carrying around a huge apron of flesh. And imagine if you wore a sack of potatoes around your belly with a belt on your back. What that would do to you after decades
Scott Benner 39:46
pulls on you. Yeah, but John, listen, I've only lost 50 pounds. Okay? And I say only because obviously you're you're in a different league. But what has changed for me? My knees don't hurt. I don't have plantar fasciitis anymore. My back's not always stiff. I feel better generally speaking, like I feel healthier, more awake, more alive. Like all that stuff like, I sleep better, I have significantly less acid reflux almost none, just, you know, all have these different things that have changed with my weight that I swear to you, if you would have asked me prior to losing 50 pounds, Hey, Scott is your plantar fasciitis from your weight, I would have said No, probably not. But I mean, now that you look at it, like, in hindsight, you're like, well, obviously it was, you don't need me like, Why did my knees hurt? Or my knee hurt? Because you know, I have little cartilage break down on my knee like, yeah, okay, it must be genetic or something. Or it's because I had 50 pounds. I don't know how to explain that I'm a pretty bright person. And that I didn't know my knee hurt because I was fat. I know that sounds insane. But I really I didn't know that. I didn't know that I was tired because of that. I didn't understand any of that. And for context, I use the GLP to lose weight. So I haven't significantly changed the things I'm eating. I honestly didn't, I wasn't a particularly poor eater. My body just didn't deal with food. Well, my digestion was wrong, I wasn't holding nutrients correctly. Like all this other stuff was happening, this GLP has changed all of that for me. On my ferritin I just had my bloodwork done. And then I forget, it's like I forget what is 166 or 188. Like, it's it doesn't matter. It's up in that range. I haven't had an infusion in like a year and a half before that, if I didn't have an iron infusion, every six months, my heart would be down to 10. And I was shutting off. My body wasn't even holding my nutrients. And I don't even know how to explain why that is exactly yet. Obviously GLP slows down your digestion, is it just leaving the food in my stomach longer so I can actually absorb the nutrients I'm eating? I don't know, do I have a GLP deficiency? I don't know. But what I do know is my knee doesn't hurt, my back doesn't hurt, my feet don't hurt. I'm more alive and awake. And I swear to God, if you would have asked me two years ago, what that was from, I wouldn't have said my weight. So I don't even know how to explain that.
Jon 42:16
Healthy lifestyle is the fundament for a better life. And whatever disease you have, whether it's curable or you know, like in my case, reversible, in type one, there is no fundamental cure, but there's treatment, eat well shake your bones as much as you can. And things are going to be better.
Scott Benner 42:36
Yeah, I just think that's true. I mean, not that, again, if you would have asked me that. I would have said that. I just didn't think it applied to me for some reason. Right? Yeah. Right. Yeah. So okay, so I'm sorry. So you've got we've got this weight off you now. And you're carrying around a lot of extra skin right?
Jon 42:55
Here, you saw the picture is pretty profound. And yeah, if you look at the size of the hands and some of the pictures, and then transfer that to the picture of the final removal, you can get an idea of the scale there.
Scott Benner 43:09
I mean, you sent me a photo of yourself. It looks like it's taken basically, like from your neck down your splayed, basically, right. And the truth is, is that you have to really focus for a minute to realize it's a person. Like it really is that like, like just, I don't know what the word is altered. And look, it
Jon 43:30
looks like a cattle abattoir kind of thing. Right? It looks like they're cutting cattle open to make meat of it or something. In my opinion. Listen,
Scott Benner 43:39
if you would have told me it was a giant tuna on a boat, and they were getting ready to cut it up. I would have believed that for half a second. Yeah. I mean, how do they measure what they took off it? Was it inches or weight? Or how do they relay it to you? That's
Jon 43:51
a very good question. Because when they take that the skin off, it has the adipose tissue attached to it, you don't lose fat cells. And typically you don't increase the amount of fat cells you have, except for when you get into extreme obesity, you actually do create new fat. So what you do is you to stem them, you fill them, right, they get larger and larger. So when you've lost the weight, there, it's still there. And people who maybe have lost the weight weight as a result of rapid weight loss due to like bariatric surgery or whatever. And then they say you know have to keep it off for 18 months or something. And by the time they take that off there might even have some adjunct liposuction to go with it right to bring everything together. In my case, the doctor noticed that the bulk of the weight loss and also this the other thing, I was down to 270 when I had the surgery, okay, were 275
Scott Benner 44:46
Oh God, John 25 pounds without a skin.
Jon 44:48
So no, no, no, the actual weight of the skin was 13 pounds. But the doctor said Had this been like an 18 month weight loss. It would have weighed considerably more Oh, because of the the condition of the fat cell. Yeah. So what I had was a very emaciated layer of fat. And that ended up causing complications with fluid with drainage later. But on the other hand, in terms of healing, I healed like a Star Trek movie. You know, I mean, like when they pass the hand over the wound, the alien does and it heals right away. Yeah, I healed amazingly fast. And the doctor pointed out and trained the staff on this as well, that drainage is just a standard component of the healing and it's not a complication. Mine took a long time. But everything else healed up so amazingly well. And I would like to say at this point, put this out, too. We as Luke during my operations, the iOS loop app was used during my operation to maintain my blood glucose levels. How
Scott Benner 45:47
long was the operation? Five
Jon 45:49
hours plus,
Scott Benner 45:51
wow. And was there someone there managing your diabetes for you when you're out? Are you just let the loop run it?
Jon 45:56
Well, so you know, there's two people in the surgery that are the the prime operators, one guy's got is keeping you alive, and the other guys is doing the surgery. So the anesthesiologist is key. And I met my anesthesiologist before the surgery. And we had meetings, and he said he was very interested in using loop. And so we use loop during my surgery. So he had my phone on his station, and did not have D five, set up dextrose 5%. Right. He did not have a dextrose solution setup for me, gets ready to do so it needed. He knew my control. And he knew what I was doing. And we we had done a zoom session where I showed him how loop worked. We ran it through my surgery. And by gum, it was just amazing. And, you know, I believe I know it opens the door for other people, because it was really, it's not likely that you're going to get a surgical team to do that.
Scott Benner 46:52
Arden's had short procedures where they've let it run. She's also had procedures where they told me to shut it off, and I pretended to shut it off and left it off.
Jon 47:03
Yeah, but this was like a full on five hours.
Scott Benner 47:06
This was a four to five hours of eight hours of recovery where you're not awake afterwards. No eight hours front end
Jon 47:13
of unconsciousness, right? Because about three hours and I mean, right, tacked on to either end. And you know, I get that out of my Nightscout to
Scott Benner 47:21
I can see Yeah, listen to I mean, the truth is, it's a good example of good settings, and how you can fast with diabetes to if you have if your settings are good, and you're on a good algorithm like that. So Well,
Jon 47:32
having said that, because of my, my diabetes is my diabetes, and what I do is what I do, but I eat once a day, one time in a day later than I should, because I work and I get involved in things. So I eat about 7pm would
Scott Benner 47:46
walk me through your day that you wake up. You don't eat you drink anything. Water. Okay.
Jon 47:51
Oh, coffee, coffee. I love coffee. But I'll tell you about coffee is I don't allow myself to have coffee every day. Because chemical dependency, I
Scott Benner 47:59
say you don't want to get hooked on it. Yeah, I don't drink coffee. But um, when I see some people, they go after it like it's a little too important. You don't I mean,
Jon 48:09
it has a physiological effect. And I need to be I need to be in control of my physiology.
Scott Benner 48:15
You think it would be a gateway to sugar and other things?
Jon 48:19
At this point? No, because I'm hell bent. But I do think it can be something that everything is kind of in moderation. And I think that too much of anything is not good. And, and caffeine is a drug. And I don't want to stimulate those portions of my brain, even if it's not going to get me into sugar. I say, I don't want to be a junkie.
Scott Benner 48:39
No, I hear what you're saying. Okay, so I'd like to know a little more about the surgery. So where does most of the I mean, are they taking it from limbs from midsection, everywhere?
Jon 48:52
I have a 30 inch suture going horizontally across my body just above the pubis just above the mons, right, yeah, and it goes 30 inches from each side, each side. I'm 5046 inches now. So you can imagine. Oh my gosh, I never even thought about this though right now. But 16 inches of me is not hitch or is the hinge right. The other is this 30 inch scar that goes all the way around. And so what they do is they cut that just below my moves. I had to get that choke and they cut me just you know, somewheres below up high north, and then they cut me right above the mons maybe a little bit deep there because he pulled it up a bit, which was lovely. Yeah. And my doc, every surgeon has a different philosophy and so forth. And some people want to be what they call snatched, so they have a tight bod. But I'm not in the tight BOD kind of category. He doesn't want to pull you too tight. So you have to walk over and a hunch for a long time and all this. So anyways, they cut you apply, they cut you down low, and they remove the section tapering towards the edges, right? It tapers down, and then they saw you back up to top into the bottom end. Wow. Yeah, it's pretty profound. Those pitchers you don't understand until you see the pitcher. Now there's
Scott Benner 50:03
no way to understand that actually, was it painful the recovery? Not at
Jon 50:07
all. And it's, again, it's different for everybody else. I have a high pain threshold, I have chronic pain. And it just it for me, I didn't take any painkillers at all. Okay,
Scott Benner 50:15
I do wonder if not to your degree, but I do wonder if this is a thing I'll need eventually. Or if I'll just because it's funny, I don't think about it. Like, I have to say, visually, I don't care. I'm so much happier being smaller that this bit that's around my midsection. Still, they're still fat there. I'm not done yet. But if it was just skin, I honestly don't know if I would care. I'm so happy, just feeling better.
Jon 50:46
And that's a lot of the way I felt about it. But it becomes physically debilitating. It is hygienic ly and sexually limiting. It is caused me to be effectively, you know, crippled, yeah. Now I'm going to turn that around to I said somebody at the store the other day, we're talking, I said, I decided to swallow my pride and take the ride. So I'm in the little electric cart. And it's funny, I used to be in that little electric cart and be a big guy in the electric cart. And now I'm in our society, a normal size guy, as it were, and I'm in the car. And you know, I want to get up and start walking. But I know that halfway through my shopping or a quarter of the way through, I will not be able to continue to be exhaust carry on. So I have to this is spoons theory of disability, you have so many spoons to spend in a day, right? And I don't want to spend all of my ability, starting to shop and not being able to finish. And then before I took the cart, I would do that I would get stuff real quick, go to the checkout, sit there leaning against the candy now trying to support my weight and my pain and sit in the car for 10 minutes before I could drive home. Yeah, so I decided at one point to give myself that break. But now I'm kind of at the point where I want to go there for a small shopping and do it without sitting down in the car. But then I don't want people to say oh, you've been faking it. Or like
Scott Benner 52:00
John's complicated. I got a quick little procedure on my big toe ones. And the next day, Kelly's like, I'm gonna go to the restroom. Like, I'm totally coming with you. And she goes, what you can't walk. I'm like, I know, I want to drive the car rolled around that place like a king on that card. I was like it was amazing. So what do you think? I mean, you're obviously on a path to get your like, what is it? You're trying to get back muscle tone, like, what do you think you're lacking right now?
Jon 52:26
Yes, the first thing I'm trying to do is get some core strength back. And when I was swimming before the surgery that was really working out well. And I wanted to add to that, a home gym component of barbells. And working on some weight training, not necessarily a complete, we would call the long, not the barbells. But the full weight thing. Maybe not that to start but just the barbells and do a bunch of different exercises to start bringing the bat in which would continue to increase the metabolic rate, it would do muscular things that are important for me and all that. I'll tell you a problem is the work I do, I don't get paid very much money at all. And I'm kind of just barely making it. And my car went completely but up. And so I don't have a car and I can't get to the pool. And I am desperately trying to find a used car. I've got a limited amount of money that I can spend on the used car market is insane. Yeah. And I live rural. So by the time I find something that's a candidate, I have to drive a whole day there and back to look at it and there's undisclosed damage. So right now the biggest thing of my life is getting mobile again, and getting back in the pool right away. And thing is, can I start doing some weight or resistance band training right now? Yes, I can. And I need to not use the swimming as an excuse for that. But the reality is that time in the pool with zero G means everything to me. Big
Scott Benner 53:45
deal. Yeah. Yeah. I wonder if your doctor couldn't get a transport for you to the pool under insurance? Well, the
Jon 53:55
problem with that is I have marketplace insurance. I'm thrilled that they cover my diabetic supplies, right? They're not going to go too far into that. The other thing is timing of it. So my work? Yeah, I guess you're right. I trained people how to use Lou, they schedule sessions with me, my calendars available, they schedule sessions with me. And I find that people are on my calendar, right that they just show up. And I have to schedule around that. I'm going to swim the mile that I do, it takes me an hour, but it takes the whole round trip at least 90 minutes. And I've got to fit that in my day. And I've got to be so you can't like oh, the transport is late today. Or, you know, I have to be back at my office home office to do the next session. And so that's a limiter and you know, again, there's all kinds of rationalizations and you have to not let this stop you or slow you down. So you know, I'm once again convicted that I need to get out some resistance bands and work with that. I do have a little treadmill under the desk thing that I give some work with. Yeah, I'm sorry. My answer is I can I can do more regardless and I need to Okay,
Scott Benner 55:00
well, I mean, it's tough. Like if the walking, I mean it, the zero gravity of the water is what's really is what's making it possible for you. Yeah, yeah. Unfortunate
Jon 55:10
it really is. Now, I'm hoping that that plus the weight training can get me core strength, it'll take some stress off of the off of the back. But I also believe that the Statins have been causing me some muscle issues that may be playing into a lot as well. I was
Scott Benner 55:25
going to ask how long of being off of them do you think until you feel value
Jon 55:30
from that? I'm very much enamored of the scientific method and not allowing correlation to be mistaken for causation and things like this. So I really try to get long data on things I can tell you that subjectively it feels like I'm feeling better, I'm sleeping, I don't have cramps. So I can't sleep more, we're more about two or three hours, and I have to get up and walk it off, okay. And I've been able to sleep I've been able to sleep five or six hours, okay, and I'm also ingesting salts. I'm increasing my specific salt intakes, not just salt on my food, but I'm using a salt supplement, I often get very bad debilitating cramps in my legs at night. And those are dramatically reduced as well. So give me another six months. And I'll tell you, you know, I'm sad. But right now, I think it's, it's I don't think it's any worse. I have to have a cholesterol test in another month or two, and just get a handle on what's happening there. I think it's better Good.
Scott Benner 56:28
I'm glad. Just thinking about your predicament. And it's hard to like, I'm trying to look for other ideas that would be valuable for you. But I don't know what they're none are popped into mind. You know?
Jon 56:39
Yeah, basically, I just need to find the miracle used car that's going to work out for me for you know, the $6,000 I've got Yeah, and I just need to run about to do groceries and stuff. And as soon as I do that, I'm going to be a regular fixture at the pool again. And that's going to be a really cool thing.
Scott Benner 56:54
I don't I don't want to get into your I'm not trying to get your finances but okay. All right. Well, I hope hopefully, this is something you can figure out. So
Jon 57:00
I have friends to talk about a GoFundMe, but I'm the guy who contributes to go fund this. So I know this
Scott Benner 57:07
is gonna sound ridiculous, but you said that when he cut you, you know, at your waist. And he cinched it up like you, you were like, which was lovely. And I was like is that my penis looks bigger joke. I couldn't tell if that's what you were doing.
Jon 57:18
No, you know what? It's funny that it's a joke. And I'll be you know what, I discovered that I have one. It's crazy. Like I mentioned earlier, hygienic, and sexual function is vastly improved, you know, when I not to be graphic or anything, but when I put my hand around my pelvis, I feel a bone. I can do the Michael Jackson thing. You know, I'm
Scott Benner 57:41
talking about you. And you and I can prior to that No, right? Like, Oh, hell no. Yeah,
Jon 57:47
let me let me let you I might turn this into an after dark episode. I hope not. But in order to use a public restroom to urinate, I would have to go into a stall because I'd have to drop my trousers to my waist. Lift up my belly and do my business. And you know, what's a wonder? This sounds so silly. I can use my fly now.
Scott Benner 58:09
I tell you that must have been exciting. I'm being serious. So yeah,
Jon 58:13
I am too. Yeah. And they sell hygenic aged we have all to take care of when you defecate
Scott Benner 58:19
when you're that large. I've seen the towel on the stick thing. Yeah,
Jon 58:23
yeah. Yeah, I used to have to take a shower. I'm, it's all of a sudden become too TMI. But it gives depth to the thing.
Scott Benner 58:31
No, of course. So for clarity for people. You at that weight, bowel movement. You had to move to the shower afterwards, because there was no reaching to what you needed to reach.
Jon 58:40
Yeah, and I wasn't gonna get a towel on a stick. Yeah.
Scott Benner 58:43
And that's something man. Oh my gosh, well, your life has changed. 540
Jon 58:47
pounds is profound. That's my 600 pound life. Yeah.
Scott Benner 58:51
But your life has changed so significantly.
Jon 58:55
Yeah. Can you imagine I weighed 250 pounds. i After the surgery, I got 50 inch pants. I took the four inch before that after recovery from the surgery removal of the drains. I was wearing 50 inch pants. And that was like, almost three months after the surgery is how long it took the drains to come out. Right. And I went I bought from Amazon 5250 and 48 and you know, they have to try before you buy and I kept the 50s and it was just this week that I was like my diet bestie and I were talking and she said you know you lost a lot of weight and my pants were falling off and couldn't keep my pants off. Right on so I had to I had to put more holes in my belt. Anyways, I said you know what, I'm gonna go ahead and order a 50 a 48 and a 46 and we'll see what happens.
Scott Benner 59:37
And the 46 fits nice. Oh, it's so wonderful.
Jon 59:41
44 is off there is not the big and tall store.
Scott Benner 59:44
I started last year 38 waist and I'm a 32 now and I swear to you, you go I swear to you, I appreciate you ever I swear to you. I didn't think that was possible. Like, I mean, I really didn't think if I stuck my hands on my sides that my hips and push back then or now, like, I didn't think it was any different. But it is it's so significantly different. It's crazy. Like I put a suit on today, I was out earlier. And I had a suit on him. And I got to this place where I mean, everyone was wearing suits, but people just kept coming up to me like, Oh, my God, you look terrific. And I was like, thank you. I like it's I'm just smaller. That's all there is to it. You know,
Jon 1:00:29
when you have 46 inch waist and you're wearing size 50 or 50 to pass. It doesn't reflect where you are.
Scott Benner 1:00:38
No, it makes it worse. It really does. Like, I'll tell you one of the silliest things that I've done in the last year, super simple. But I've donated a lot of clothing over the last year. And I've always been very careful not to buy a bunch because I'm like, I'm not where I'm going yet. I'm not going to buy a bunch of clothing and then give it away again, like I was living on like the same two pairs of pants, like through the winter. You don't I mean, like doing that thing. Yeah, yeah. And but I, I spend a few extra dollars now on my T shirts, so that they're a higher quality fabric. And I find that I just think I just think I'm presenting better now. And yes, you lose that like clean feeling when your clothing is too big as well. Like it's not just the fabric. Yeah, it's the way it fits you. You look, the old homeless basically, you don't I mean, you look like you're reaching your bag and you took what they gave you is basically how it ends up, you know, coming off.
Jon 1:01:32
It reminds me at the height. Oh, go ahead. No,
Scott Benner 1:01:35
I was just gonna say it actually, it impacts how you feel about yourself. And you don't realize it right away
Jon 1:01:41
when I was at my maximum weight, and went to the big and tall store, and had to go to the far end of the pants, to the 70 fours. And all they have are bright orange and checkered plaid.
Scott Benner 1:01:57
That seems that seems like a joke, doesn't it? Yeah. It
Jon 1:02:00
seems like a cruel joke. Yeah. And, you know, I ordered some jeans just, they're gonna get here tomorrow. Everything's Amazon. I ordered some denim jeans. They're not quite Levi's Bible ones, you know, I'll get this. I don't even know if they still make those. But there's some jeans and I expect, you know, to really dig on that and I'm gonna get shirts. Next couple of shirts.
Scott Benner 1:02:24
Let me ask you a question. I was sharing this with my wife the other day. If I have a larger meal than I'm accustomed to now, and I feel full tick, just have that very full feeling. When I get to a mirror, I almost consciously expect to look better. And and when I don't, I'm stunned. And it's a real I can see that. Yeah. So I told my wife. And as I was saying it to her, she goes, I know exactly what you're talking about. Like if you feel full. When you look yourself in the mirror, you expect to see the old view there. I was like, Oh, my guy suggests. Yeah, please let me suggest
Jon 1:03:01
something that comes to mind. This may or may not be true. But this is a perception I have on it is when you're full like that and satiated. You're on the drug rush. And that same drug rush makes you remember this conditions of that addiction
Scott Benner 1:03:19
could very well
Jon 1:03:21
put you in the mind of that body. Yeah, you become that person that's under the control of overeating, or bad eating. And so you feel like that person and he doesn't change just because of that one meal and you look at yourself and you're like, No, no, I'm still I'm still. Okay. But maybe that's a mechanism to make you think hey, don't it's
Scott Benner 1:03:41
been an illuminating year so far. I have to say.
Jon 1:03:44
I'd like to follow up. I enjoy the journey you've had on that as well.
Scott Benner 1:03:49
Oh, good. I'm glad. Thank you.
Jon 1:03:50
i How's your glucose? How's
Scott Benner 1:03:52
your mine's good pre diabetic diet. Okay. Yeah, I've had my endocrinologist told me last year, she said look, based on all of your, your a one sees over the years that I see she goes, I think it is incredibly unlikely for you to ever develop type two diabetes. And I was like,
Jon 1:04:11
I've noticed super obese people that are dead now, that did not have diagnosed diabetes.
Scott Benner 1:04:17
Yeah. My fasting glucose is they're always like in the, you know, 80s Nice. I think I've shouldn't talk on something probably, but I think I'll be alright. And that that's based. I don't know if I'll get type one diabetes. But well, yeah. That
Jon 1:04:31
gets triggered right? By events, right? You get you get COVID You get
Scott Benner 1:04:35
I've never done trial that personally. So I don't know if I have markers or not. Well,
Jon 1:04:42
you you know as as much as anybody more than anybody the the genetic relationships in the family tree actions. I
Scott Benner 1:04:49
don't think it's not possible, that's for sure. I'm just trying to, I mean, at this point, John, I'm just trying to eat well, and move and continue in the right interaction. Those are my goals.
Jon 1:05:02
Something I wanted to share that that I thought of just a few moments ago, is I like being hungry. Okay. It's a feeling I enjoy. I don't like being hungry to the point where I'm, I'm feeling physically impacted like, you know, I'm low sugar per se but like I'm ravenously hungry, but I like to be hungry and that's a feel. I think that's because that's a feeling I never had. I thought I was hungry. I was obsessed. I was feeding the drug needs. I was hungry for the dopamine. Yeah, but you know, like, so my fasting isn't at all difficult for me. And when I do get a little hungry, I know that dinner is coming soon. I make beautiful food. If you look at my timeline on Facebook, you'll see that I just make really, really good meals. So I was also worried am I going to have a rebound? Where I go from obsessive eating to some sort of anorexics thing, right? And absolutely not. I enjoy my food so much. Good. Good. I'm
Scott Benner 1:06:00
glad I have to say I do too. I had like a like a chicken sandwich last night for dinner. Like I took some chicken breasts and I season them and and and I put a tiny bit of oil in the pan a little olive oil. I fried them up and they were nice and tasty. I put it in a pita threw some lettuce in with it. I graded a tiny bit of cheese over it. I sat and ate it. It was half it was half a chicken breast. And I got done. I'm like I'm full. This is great. I'm good. I don't know what
Jon 1:06:26
the half of the time you spent making. It was as much a part of that meal as for
Scott Benner 1:06:30
sure. Ya know, I love making food. I still do. I like making food for my kids to like, it makes me happy to cook for them. But But beyond that I got up this morning. And I went to a viewing today. So people are like, Oh, Scott in the middle of the weekend a suit but nothing fancy. I did not eat today until about I think two o'clock in the afternoon. And I was hungry at that point. But if I wouldn't have eaten, I would have been okay to. Yep, yep, yep. Now it's 6pm. Like obviously my day is a little upside down because this viewing came out of nowhere and John was nice to move his his recording around with me. I'm probably going to finish with you and go have the other half of that chicken breast into similar pizza again, I'll probably that's probably how I'll end the day. Last
Jon 1:07:14
night I had a cup of soup for my meal. It was a very light. It was a very light day today. I don't know what I've got the frosted to figure that out. Oh, you know, I'll probably I'll probably have an omelet.
Scott Benner 1:07:28
Okay. Oh, I eat a lot of eggs. I love Yep. Yeah. Usually for breakfast, I have a couple of eggs in in a wrap with something some protein usually, you know, something like that. I do that in the morning a lot. Yeah, no, I
Jon 1:07:42
agree. I'm gonna have a sausage. Yeah, it's nice.
Scott Benner 1:07:46
All right, let's it's time for me to ask you if we've missed anything, because I know you had some pretty specific, like, you're very prepared, and I appreciate it. And yet, you're very conversational, which I also appreciate. So I want to make sure we're not missing anything that you meant to talk about.
Jon 1:08:00
You know, I wanted to talk about the consistency and the improvement, the fact that it wasn't just an overnight thing and gone. And so the idea of sustaining a healthy relationship with my diabeetus. And the other factors in my life is I think a big part of my message is that it's not rigorous for me. It's very affirming and positive, it reduces stress in my life. I'm not at odds with the way I eat. And I'm constantly rewarded with the results I see. And I continue to increase those rewards. It's, you know, diminishing returns. It's not really here yet, because there's so many things that I continue to be able to improve. And another part of the message is it's never too late. And I guess another part of the message is, there's more that binds us than separates us. And so a healthy lifestyle, healthy social interactions, healthy interactions with food, all these things will reduce our suffering, and help us to focus on the things that are effective in treating the chronic illnesses we have. And so I really appreciate that your group was open to all
Scott Benner 1:09:11
of us. Oh, no, it's my pleasure. I want very much for the group to be open to everybody. I also think that what helps you as a person with type two diabetes, what helps a person with type one diabetes? And what how, what helps the person who doesn't have diabetes? Speaking about like, just general health, food, that kind of thing? I don't know that any of us are in a different boat than anybody else. Finger you know what I mean? I mean, I think quality food at a reasonable proportion is something everyone should be aiming at. I just think that people with diabetes are forced to pay attention to it sooner in life than maybe people without it are.
Jon 1:09:47
Yes, but you know what the Epilepsy Foundation as a whole webpage about addressing diet and exercise, right? Everybody
Scott Benner 1:09:55
should be doing what you're doing to some degree or another So obviously, it wasn't easy for you, you had mitigating factors, so to a lot of other people, but I mean, it's just very impressive that you stayed after John, you're you speak like a young man, I don't know if you're aware of that or not like, and you have a younger voice, but like, it's important to remember, you're 63 years old, you know, and you're, and you're doing these things. And you have the attitude of somebody who's 25, and just gained 10 pounds and realized, Oh, my God, it's getting away from me, you're trying with that kind of energy. And I think that may be the most impressive part of this whole thing, to be perfectly honest. And if people go back to listen to your first episode, that a number of things stacked against you, when you're growing up, too. So yeah, yeah, it's a bit rough. It's a bit rough. It's a very kind way to talk about a child. But yeah, it was a bit rough.
Jon 1:10:43
I like to say, it's half jokingly or whatever. But I'm a 16 year old guy who acts sometimes like he's 12 and thinks he's like, 25.
Scott Benner 1:10:54
That's good, though. I think that there's I don't think there's anything wrong with that. I just think that it'd be easy for people to listen to you and forget that you're a 63 year old man who's been through all this and whose body has been through what it's been through, and you're still putting in this effort, and you're willing to take slow returns to?
Jon 1:11:11
Well, I believe the biggest gift I have right now is sharing my success with other people that can identify with it and adopt some of the elements, you know, see hoping it and maybe adopt some of these elements to address their needs when they're much, much younger.
Scott Benner 1:11:25
Yeah, I want to say to that, I think the GLP has helped me. So I've always, like as an adult, I always kind of endeavor to find things that make me more patient, because my patients is not is not good, right? So I do things like iraes cactuses, because they grow very slowly. Nice. And if you get it to grow an inch in a year, and you don't kill it, you've really accomplished something. And so I like the idea of doing something that doesn't pay you back right away. The GLP helped me with that, too. And here's how I knew I was going to lose weight on the GLP. I just knew I was going to, but I knew it wasn't gonna happen quickly. And I was able to, instead of saying, I gotta lose weight, I want to be 10 pounds lighter in a week or a month, or like, you know, like having that kind of like fervor for it. I was able to say, I don't care how long this takes, because I know when I get there, I'm gonna be where I mean to be. And that was really helpful. And then because of the GLP, there was weight loss along the way. So I didn't endure to in three weeks in the first six months where I was like, Oh, my God, my weights not going down. always felt like it was working, which allowed me to actually be patient, II call it a crutch or whatever you want. I honestly, I'm looking for doctors to come on and talk about how the medications work. I think I've got a couple lined up. But I genuinely believe I have some sort of a deficiency that it's covering. And just being able to see things moving in the right direction allowed me to act about my weight, the way I do about the cactus, I grow, there's a little light green ring. It grew. And I was able to say that's fine, because it's alive. And I've got all the time in the world. So I'll just wait. I don't know. It's just I think being patient is a big part of having the kind of success that you had. And I don't know what you think about that.
Jon 1:13:24
Well, I can relate in one way directly. I have eight aquariums here. And the largest are 60 and 75, gallons and small Sarkar. 40. I practice a style of fish keeping that is you would call a balanced environment. So a lot of people are focused on changing the water in the tank regularly and adding additives and all this, my focus is on doing as little as possible to achieve a balanced ecosystem. And my aquariums are just gorgeous, full of plant growth, the fish live forever, everything's pretty cool. And for me, that is a part of my diabetes, self care, the ability to maintain those environments in balance is informed by my ability to do it myself. So your thing with the cactus I can really relate to, because my thing with the aquariums is related to my self care. Yeah,
Scott Benner 1:14:15
I've talked about this in the podcast, a couple of little places, but I've almost by mistake become a person who owns a chameleon. And it's lovely that chameleon is absolutely lovely, but it was a gift. And the people who gave me the gift as much as I appreciate it didn't actually buy me the chameleon that I would have bought for myself had I bought a chameleon. So once I learned how to do you know all and it's another one of those things, it's an incredible amount of detail that you know, to do to do it right. And, you know, again, there's this living thing on the other side waiting, you know, for you to to do it right, you know, so I added a second chameleon I have to I'm not going to get any more I promise. The second one I got grows incredibly slowly. For over like three years to become, even to an adult size and may keep growing beyond that. But it needs a really large enclosure. And it's the same idea that there's this little tiny baby thing right now, that looks like it's in a world that's too big for itself. But it's but it's not an I don't get to see it fill up unless I do a good balanced, slow and steady job for this little animal for at least three years, right, then go. And I think of it the same exact way. Like I like that it can't be rushed. I think it's important for
Jon 1:15:36
people. And that's the way I feel about my goals for my diabetic control. My weight is, you know, it's been going actually remarkably quickly, but I never had any impetus to do it. Any of the feed i There's a phrase I use is one millimole at a time,
Scott Benner 1:15:51
that's a great, it's a great way to put it I if you're measuring your weight loss, your health recovery, your diabetes, care, any of that stuff in days or weeks. I think you're putting yourself in an unfair position.
Jon 1:16:03
You'll never get there. You know, you have to do you have to keep hiking. And when you get to the next rest place, you look down and you see the progress you've made. And then you snack, you rest. You drink your water and you get up and you walk the next mile. buy
Scott Benner 1:16:16
another pair of pants two inches smaller and get going again.
Jon 1:16:19
Exactly. I mean, can you imagine when I get to go to town and bypass at a store? Yeah, no, I'm
Scott Benner 1:16:26
excited for you honestly. Yeah, seriously. That's a couple months away. Yeah. Now I've had listen, I feel weird saying this. But you know, there's a death in my extended family came out of nowhere. I had to go to a viewing today. And it was yesterday afternoon, I said to my wife, oh my God, I don't have anything to wear to this viewing. And I ran out last night at like, seven o'clock. And I was like, she's like, What are you gonna do? Am I gonna go to Macy's to get a jacket? Like, you know what I mean? Like, I got a, you know, so be respectful. I met Matt Listen, he's a great guy. And, and he died. And he deserves for me to show up at his viewing in a suit. And it's just how I feel. Right? So. Yes, so I'm out. And I gotta tell you as sad as the reason was, I was shopping. I never had a better half an hour of my life in a store. I mean, I tried every jacket on, I look good. And every one of them. I was like, Oh my God. Like I thought that color wasn't for me. I thought that print was it wasn't that it was I was overweight. I didn't even realize it. And so I you know, I was able to shop I felt terrific. You know, like doing it I at one point, I was like, I'm going to try it on the slim cut. I was like, Oh my God, this fits to like, none of this makes any sense. I walked out of there, I felt like I was 12 feet tall. Like seriously.
Jon 1:17:43
I don't want to be too presumptuous. But you know what? I'll bet you the old man smiled at that. No, I
Scott Benner 1:17:49
hope so. I hope so.
Jon 1:17:50
You know what I'm saying? Yeah, that's, that's the best tribute you could make anybody you love is to take care of yourself. And to be in a place where you can feel that way. I
Scott Benner 1:17:59
was the happiest person that a funeral today you've ever seen in your life on because I was just like, Man, I know, I look good in this suit. As much as it's not about how you look, it's how healthy you feel. It is like, to some degree, I feel better because I look better. And that's just you know, I didn't dislike myself before John, but and I don't like myself more now. But it's just that I'm having a different lived experience at this point. I
Jon 1:18:24
think that's a good way to put it. And when I put on those 40 sixes, I had the 46 and 48. In the 50. I said, Let's start at the 46 I can get done with this. And when they fit. It was like, you know, the heavens opened, there were trumpets, there was like, a little giggity giggity. I mean, it was a high. It felt really good. It felt like arriving
Scott Benner 1:18:43
oh my god even pushing the clothing into like a one of those bins where you make the donations. I've never been so happy to give something away that I just bought. You know, I was like, oh my god, hope somebody else can use this, but it's not mine anymore. And I don't need it. Because, um, you know, 3836 34? You know, actually, when it went to 32, I decided I was like this doesn't make sense, like so.
Jon 1:19:05
And you know what, I have that history of gaining weight back. I broken through that so far beyond that. I'm never going back.
Scott Benner 1:19:13
I feel that way too. My wife was like, Are you going to keep anything? And I was like, No, I was like, I will not. It'll be my punishment to myself. If I have to go back out and buy something at a bigger size. So then I don't know if that's healthy or not. But I just I was like, I'm not keeping any of this because it felt like a crutch if I did, honestly. Hey,
Jon 1:19:30
I did get to talk about everything. And I again, I want to thank you for the opportunity to to share my story again.
Scott Benner 1:19:38
Oh, of course. All right. Well, John, I'm terrific. I'm gonna let you go defrost your meal and I'm going to make my chicken sandwich and we're all gonna go be happy and healthy. Yes. Hold on for me for a second. I'd like to say goodbye privately. Sure, thanks.
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if you have type two or pre diabetes, that type two diabetes Pro Tip series from the Juicebox Podcast is exactly what you're looking for. Do you have a friend or a family member who is struggling to understand their type two and how to manage it? This series is for them seven episodes to get you on track and up to speed. Episode 860 series intro 864 guilt and shame episode 869 medical team 874 fuelling plan, Episode 880 diabetes technology episode 85 GLP ones metformin and insulin and an episode 889 We talk about movement. This episode is with me and Jenny Smith. Of course, you know Jenny is a Certified diabetes Care and Education Specialist. She's a registered and licensed dietitian and Jenny has had type one diabetes for over 30 years. Too many people don't understand their type two diabetes. And this series aims to fix that, share it with a friend or get started today. I know that Facebook has a bad reputation, but please give the private Facebook group for the Juicebox Podcast. A healthy once over Juicebox Podcast type one diabetes. The group now has 47,000 members in it, it gets 150 new members a day, it is completely free. And at the very least you can watch other people talk about diabetes, and everybody is welcome type one type two gestational loved ones, everyone is welcome. Go up into the feature tab of the private Facebook group. And there you'll see lists upon lists of all of the management series that are available to you for free in the Juicebox Podcast, becoming a member of that group. I really think it will help you it will at least give you a community. You'll be able to kind of lurk around see what people are talking about. Pick up some tips and tricks. Maybe you can ask a question or offer some help Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com
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