#688 Type Two Stories: Jon
Jon has type 2 diabetes and uses insulin.
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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 688 of the Juicebox Podcast.
Welcome back, everybody on today's show, I'll be speaking with John. John is my second interview in my type two stories series. John has type two diabetes. He listens to the podcast and wait till you find out what using insulin has done for him. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you have type two diabetes, and you would like to be on the show, please contact me. I'm trying to build a vibrant series of people living with type two diabetes, I would love for you to come on the show and share your story. I hope you reach out. If you have type one diabetes, and you are a US resident or the caregiver of someone with type one, please go to T one D exchange.org Ford slash juice box and fill out the survey, it will take you fewer than 10 minutes. And when you do it, you'll be helping someone with type one diabetes and supporting the podcast.
This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod five, and the Omni pod dash. To learn more or to get started today go to Omni pod.com Ford slash juicebox. The show is also sponsored today by Dexcom, makers of the Dexcom G six continuous glucose monitor. And to get started with the Dexcom. Again, all you have to do is go to dexcom.com forward slash juice box. Both Dexcom and Omni pod have different versions of a free offer. You have to go to their lengths to find out if you're eligible. But you could be eligible for a free 10 day supply of the Dexcom G six and you may be eligible for a free 30 day supply of on the pod dash. Go check them out and find out.
Jon 2:20
My name is John kafele. shouldn't give you that like patient presents with a kind of a thing. I'm I'm 61 years old today.
Scott Benner 2:30
Oh my goodness, happy birthday.
Jon 2:32
Thank you very much. And it's been a journey fraught with peril and joy, as most lives are, and I'm I guess I should just kind of give the dump about what my diabetes is. Yeah, sure. Um, I currently weigh 275 pounds at 61 years of age when I was 33, I weighed over 500 pounds. I have weighed over 300 pounds since my early teens. I was raised institutionalized in different kinds of group homes, boys homes, and even a mental hospital. And when I was 16, I self emancipated which means I ran away and hitchhiked across all North America and stuff. And that was a lot of fun. But my health and all the things that go in so I hear you have episodes about body dysmorphia, you have episodes about this, you have episodes of that. And I find myself in so many of them right and in many of them in ways that I haven't fully acknowledged or processed. And so that's something that podcast really helps me with is the great variety of personal experience. And even though I'm not type one, I'll get to that a second. I have found the journey of people with type one, to be very inspirational, especially the parents caring for the children. And given what I've told you so far, you can see that that's probably really important to me. So great, big hurrah to the Daya moms and the dads their forces of nature. And just really heartwarming to see what they go through and what they do. And I'm glad that they found you in this podcast in the community because the magic is there being bold with insulin and facing the challenges and dealing with them takes a lot of courage and a lot of information. So we really get to me I am type two, you can tell because my weight and everything. I've had all the tests for type one, I'm a classic type two. And what happened? Is this going well.
Scott Benner 4:28
Are you kidding me? I'm gonna I'm gonna cry in a second. May I? Can I Can I interject here? I never imagined that the podcast would help somebody with type two diabetes. I hoped it would. But it didn't imagine it would. And let me tell you why and why I think you're such a special person. For the entirety of the time that I've been doing this going all the way back to writing about it and being just aware of people with diabetes, you know, and having scope being able to See many, many people, you know, living at the same time sort of virtually? The one thing that I've thought forever is we could help people with type two diabetes, but they don't have the same drive to be evolved involved in a community. And I, you know, I mean, I don't know why, right? I'm not there with them. I'm not a psychiatrist, I don't have type two. But it always seemed to me that it was a difficult thing to like, raise a flag for, like, it's hard to stand up, I'm imagining and say, I have type two diabetes, because most people are going to think, Oh, well, sure you ate your way to this. And then and then that pushes everything back onto you that you don't want to hear, which might even not be true for you, by the way, but even if it isn't, you know, it's not something you want to hear if it is, with type one. It's a thing that happened to you, and you're fighting back against it. And so I think that's the difference. I think that a type one feels like a thing happened to me. And I can stand up and push back. And with type two, it could feel like I did this thing. And I'm embarrassed. And because of this, is that right?
Jon 6:14
Yeah, very much. No, sorry. My Facebook is doing that thing again.
Scott Benner 6:17
Okay, well, yeah, I'm
Jon 6:19
really sorry. Too many computers, too many things going on. Um, it's very true. And I've had to go through a lot of evaluation and deep thought, to deal with the what I call the the very real chasm, I guess, the gulf between type one and type two. And I have my, my guilt burden, of course, and I, you know, it's like sexuality and other things, is it nature or nurture, and doesn't matter? Right. Ultimately, it's about for me taking responsibility for what I'm doing, and for who I am and learning from well, as we'll see, in this discussion, it became a matter of having the right tools and getting out of the type two, stereotypes and assumptions made by medicine and everything I'll add to your thing about not think not knowing that type, the Juicebox Podcast can be good for type twos. I'm professionally involved in looping right now. And we'll talk a little bit about that if the opportunity arises. I work in medical data networks to one pal, and I work with Ben West. And I have been working professionally on providing Nightscout, a loop to people for nine months. And of course, everybody I work with this type one. And the things you say make perfect sense. I'm sorry, I'm almost starting to ramble so much behind this time wrap. But type ones, in my opinion, have been dealt this hand at various ages, but often very young, and you have to deal with it, you have to incorporate into your life. And with type two, you get a real long tail, right? You can drag it out forever and ignore it. I could go on a big rant, I don't want to.
Scott Benner 7:58
So I'm sure I'm not 100%. Right for every person, right. But I think big picture talking about how to build a community, I think I've got the gist of it. And because you can't build a community around type two, it's hard to get enough type twos together to show them, hey, here's some steps, right? Or some tools or some ideas, they might help you a little bit or a lot maybe. Because you can't do that. No one tries. And so I always just in the back of my heart thought, eventually some type tools, you're going to find the podcast, it's going to help them and then I'm going to bring them on and have this conversation because I believe there's a type two podcast that would be just as valuable to TOS as it would be the ones as this podcast has been the ones and I think you could tailor it to them. And I even know how I want to do it. I've known for years how I want to do it not gonna sit here because someone will rip me off. I'm 100% certain. But the truth is, is until you can bring enough people together to support it, it won't matter. I'll be talking to myself and the person on the other end of the line. So I need to build momentum so that I can bring in more type twos until it becomes its own thing and then I can split it off. That's my idea. I'm trying to stay alive long enough for that to happen, John, and I'll tell you as you can hear me trying to clear my voice maybe it's not gonna happen, but I'm doing my best over here. I really do I see a pathway to it. You just have to get enough people to get started. That's all I'm sorry.
Jon 9:31
No, I'm sorry. Um, I talked a lot over talk sometimes. But you mentioned you hope to be stay alive to do a thing and I just wanted to interject that I have my nephew and niece here and it's not by blood, but it's a really big deal and they are my nephew and niece. And I haven't spent a good amount of time though for them for some years, but they came over and they're spending my birthday here with me at the house. 13 Charlotte and 14. Michael and I'm long ago when They were born, it was my I could get a little weepy here, definitely, I'm a very emotional person. It was like I want to live to see them in their teen years, the same kind of thing you know. And so that gets around to me taking care of my health at night, right? So the touchy thing I don't know if you remember, but when we scheduled this, it's because I reached out all a bundle of fire and flame, to do something to reach out to type twos. And we had this conversation. And I recognize that what you're doing is really good. You have experience in this community, I have a lot of experience in online communities. But I figured, let me learn more about myself and my diabetes and how I can help myself and then I can maybe try to do a group. So I think what you say is very true. There doesn't need to be a space for type twos. And another thing I've learned more than anything in my life, and I've been through a lot of diversity and a lot of diversity. But I've really learn to the diabetic community, how very important is to take everybody on. I don't know if the word is at face value, but to appreciate the differences that everybody has, and not be judgmental or declarative about things and let people express and be themselves within us. And you do a really incredible job of opening that door for everybody to speak and everybody to participate. And informing my thoughts. I had to be not too judgmental. But there is the the thing about type twos have to kind of bring it upon themselves. I call it behavioral or cultural diabetes. And I think even typed ones, and everybody has it because they want you to eat the big gulf, they want you to have the Big Mac, they want you to have restaurant portions that are absolutely insane for everybody. And so that leads to ill health across the board, regardless of whether you're type two or not. When I was very young, I had a oral glucose tolerance test, and they said I was pre diabetic.
Scott Benner 11:54
How old? How old? Were you when that happened?
Jon 12:00
I think I was probably around 12 ish. I'm gonna guess around 12.
Scott Benner 12:06
That's shocking. Yeah, I mean, at that age, it's, you know, let's break you. Let's break you down a little bit so we can tell the story. So you rattled some numbers off at the beginning. But in your teens, you're over 300 pounds. Is that right? Yes, sir. Okay. By 33 years old, you said you were up to 500? About 540.
Jon 12:25
But I was weighing myself at a feed store. And that's as high as scale that was past the 500. The scale would go. But I linearly interpolated the distance to the stop pin. Okay. Is that crazy? Dang,
Scott Benner 12:40
I didn't expect you to say feed store. John, I actually you got you caught me with that one. I just, I was thinking, as you were saying, as you started to talk, once you get to 500, another 40 pounds is, it doesn't probably even seem like a big deal.
Jon 12:55
Well, I'll tell you what I did at that time, as Lotus 123 had kind of made an appearance. And there were some date of government databases out there. And so I made my own spreadsheet to track him just memory but like 20, micronutrients and other nutrients and macronutrients and everything. And I would model my food. And I would swim a mile a day, every other day at the gym. And that's quite a thing at that weight. But I wasn't trained swimmer as a child. And it's all about form, right? Every lap was the same amount of time, backwards and forwards. When you're moving that much weight around, you don't want it bouncing back into itself. And so my swimming training helped me to do that. And I lost over 100 pounds that year, but then it was on again off again, in the decades since
Scott Benner 13:40
so you could have so you could you could successfully lose 100 pounds in a year. But it would just come back. Well, the 100 didn't
Jon 13:48
come back. So I got down from the five plus to you know, round 420 or so. And then over the years, it gravitated towards about 350. Okay, and then I would make determined pushes, right to get it down. And I got down to like 280 twice, but then rolled back and I gotta tell you, I was before the start of the zombie apocalypse. COVID
Scott Benner 14:11
Oh, I knew. Yeah, I know. Yeah,
Jon 14:12
everybody did, right. I was 280 pounds. I'm 270 ish right now. You know, it goes up and down every day. But I mean, within a pound or two or whatever, but I'm about 270 now, so I'm kind of back where I was then. But even then, my glucose was not good. You know, and I've got certain amounts of issues as a result of that. I don't know I got a little lost. So that's okay. I
Scott Benner 14:41
have questions. That's fine. So that's,
Jon 14:44
by the way, I kind of mentioned somewhere as is that you'll drag out at me what we need to
Scott Benner 14:49
we'll see what happens. If I'm on my game, right. I want to know about I want to know about when's the first time somebody said Do you have type two diabetes about What age was that?
Jon 15:01
That by memory, mind you is some words in my very early 30s,
Scott Benner 15:09
okay. And then
Jon 15:10
I had some sort of a cold kind of thing, whatever, you know, it was getting a bit like, unpleasant and I went to see a doctor. And somehow they decided to do the glucose thing. And it was I think it read the meter read something like, Oh, my God, and they put me on insulin.
Scott Benner 15:28
And that's what I want to know about. So when that happens to you in that in that moment, and you leave that office the first time, do you have any idea what's really going on? I mean, what's the what's the discussion, like the training, What's your understanding, leaving there that day,
Jon 15:44
I was on oral medications for a year or two. And then I'm kind of having to go way back in mind muscle memory. And then I saw this doctor because I was sick. And then he said, You need to be on insulin. And he handed me a pen, and showed me how to use the needle. But he was a really bad doctor. First thing he told me is I had bad pulses, and my feet was going to work. I was going to lose them soon. That was 30 plus years ago, and every doctor I've seen since then says I have my pulses are fine. So you know, and um, he was interesting. Some of the things he told me, I tried to put the little cap back on the pen needle, the little cap. And he was like, no, no, no, you don't do that. And I stuck myself i That's a funny memory I have. But he was he right from the bat told me go ahead and shoot through your pants or through your shirt, and reuse needles, and things like that. Right. Which was, I don't know, it's kind of true, you know. So that was the advice he gave me. And I remember thinking, Wow, is this this is pretty interesting. And
Scott Benner 16:44
how important can this be if I'm allowed to do it through my denim pants?
Jon 16:48
Kind of right. There was the needle go through? Exactly. denim pants? Yeah. And I guess yeah, thank you. You drag that out. It was a sort of a feeling like this is just happenstance. And it's
Scott Benner 17:01
can't be serious. Was there any education about hey, insulin does this it's made your pancreas your resistant? Your any words like that at all? Like,
Jon 17:14
absolutely not. Okay, get exercise, eat better. Take these drugs and get over yourself.
Scott Benner 17:22
See, I have to tell you like that is infuriating to me. What you just said not even the first part of what I was saying. I can't imagine a reasonable person, let alone a medical doctor, looking at a person who weighs three 352 84. Who cares? You don't I mean, like one of those one of those numbers and saying to you, oh, you know what you should do? Once you go for a walk and eat better? Sorry, no, no, no. Right? Because, because when that happens to you, in your mind, you must think oh, my gosh, I wish someone would have mentioned this earlier. Right? So it's not as if you were unaware of your health, or your weight or anything like you're I mean, talk about that for a second, you're not just not unaware, I'm assuming it, even capsules, it must be in most of your day in all of your thoughts, right? Like, I can't even imagine that it must have taken a lot of a lot of courage to go swimming at that weight.
Jon 18:24
You know, so I was raised institutionalized. And all that I've been diagnosed with every mental emotional disorder there is autism seems to be the one I'm most comfortable with. But without delving too far into that my childhood was full of abuse of all different labels that we don't need to go into right now. And my mother, there's, you know, munch houses.
Scott Benner 18:49
Yeah, yeah, sure. I yeah, there's a better
Jon 18:51
word for that, that we use in the diabetes community, especially a scientific word. It's, um, I forget the word is, but it's like when you're faking a low or you know, you're doing these things, right? It's that Munchausen thing and my mother, bless her heart is a piece of work and have a lot of problems. So there was a lot of getting me to be seen by doctors for my mind and my body in everything. So that really made me just very resistant to the whole thing about people meddling with me and telling me what I needed to do and throwing me around and did this or that diagnosis or treatment or whatever my weight problems are and we're very clearly about self image and trying to buffer myself from a lot of the realities of life and just it's a whole thing to unwrap right but it's a thing I did to insulate myself I believe and to avoid things and that's kind of a standard pathology there I think for
Scott Benner 19:49
John Yeah, John, I'm not trying to I you can stop me whenever you want to, obviously, but you you consciously and subconsciously try to make yourself unattractive to other people so that they'll absolutely They'll leave you alone, right?
Jon 20:01
At one. I mean, by the way, I'm here to be honest. And so drag it out, you know, I got no pride, I got pride, but that's not pride, right? I'm here to share. So that's exactly that's exactly the case.
Scott Benner 20:15
Okay, so some of this abuse was sexual
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Jon 24:23
Podcast sexual emotional and physical
Scott Benner 24:25
okay all right. And so you're building a force field around yourself basically and the only way you you can as a child but but I'm still like it's funny I'm now I'm stuck on a bunch of different thoughts but now I'm still stuck back on. I feel like I feel like telling a person in your situation once you get some exercise and eat better would be like coming up to me and saying if you really want to dunk Scott You just have to jump a little higher. And and then thinking that you helped me walking away proud of yourself going I got Scott on the path to dunking, you know what I mean? Well, meanwhile I'm five, nine, I can't get five inches off the ground and nothing you tell me to jump higher is ever going to make me jump any higher. And, and so then having laid it out that way and seeing just how ridiculous it is, my expectation has to be that a doctor who would say that to a person in your situation, what they're really saying is the I'm writing you off. And that's my fear that like, you know how I've been experiencing this with my mom recently. A little bit not anymore. We found the right doctor, but I don't know how much of this I've talked about on the podcast. So just very quickly. At 79 years old, my mother is living on our own, just doing great. And one day just says to us, she's in pain and she can't urinate. We take her to a doctor. Well, we take her to the hospital, it's COVID time, My poor mom sits in the ER, six, seven hours completely by herself in a house coat. You know, because my wall my brother's sitting outside in the driveway, like watching her through a window. My brother finally extracts her from that hospital takes her to another hospital where she seen and they very quickly dismiss her and tell her she has a UTI that happens to older people they say they keep her for a couple days, give her a bunch of medicine a couple days in the hospital, give her a bunch of medicine. She's still not urinating any better. They send her home, still in pain. But on these medications, don't worry, it's a UTI, you're going to feel better. A week later, my mom calls me and says Scott, this is getting no better at all. It might be getting worse, I can't urinate. It's just like it was just coming out of her at that point. She couldn't force it out. But she was so full. It was just come out, took her to another hospital. at that hospital. They did a bunch of scans. And then they drained her bladder for where they removed 1000 cc's of urine from my mom sent her home. It's just a UTI. She's fine now blah, blah, blah. Of course, it wasn't just a UTI. Her bladder fills back up again. We ended up back in a in a in a hospital. This time I'm with her. And I tell them you know as they're making her wait hours in the in the emergency room again. So COVID I took the charge nurse at the desk and I said listen to me. I was like my mom is shutting off. Look at her like she's she's collapsing. I said you have to drain her bladder. Now we'll figure out what's wrong later. Thankfully, I did that because not only did they take 2000 cc's of urine out of my mouth, that's a two liter bottle of soda. My mom comes back to life like literally like a wilted flower that someone put water on, she just rises back up starts talking again. But the big deal was that with the bladder drain, when they did the scans, they were able to see the softball sized tumor that my mom had on her ovary. Oh my god. Okay, so she had now been to two hospitals, her own doctor and a urologist over a month while she's tortured. No one found a softball sized tumor on her ovary. And I'm going to tell you that if I didn't push her to get drained prior to the scan, they still weren't going to see it because the urine was blocking the images. So that's the setup to this story. The rest of it is she now finds herself in the hospital where oncology OB starts explained to us that surgery would be dangerous. He says a lot of things that make you kind of feel like he's on your side and kind of make you feel like he's not going to do anything.
Let's send your mom to rehab for a week, get her strength back and I said to him, Hey, listen, a week before she had 2000 cc's of urine in her. She had plenty of strength. She was living on our own. She just couldn't pee. She doesn't need rehab. She's plenty strong. She needs you to take the cancer out of her. And he says to me over the phone one day, I'm not going to kill your mom on an operating table. So she's got to get stronger before I do this surgery. And that was it for me right there. John. I was like, Okay, this man's plan is to manage my mom into the grave. He is not trying to help her. He has no, he has no considerations about helping her. No, he's lying to us. She's gonna die and he's gonna go off to cancer got her before she could get rehabbed. I'm so sorry. And that was gonna be the end of it. Now, how do we fix this? Well, we get lucky because my neighbor's son grew up to be an orthopedic surgeon. So I call this kid and I asked him Do you know anybody works in this field? And he says, a girl I went to med school with. This is her background. He contacts her she contacts the guy that she works under. He says Bring your mom down. We go see an appointment. He tells my Mom Look, you're gonna be dead in four months. If we don't do anything. This surgery might be really difficult for you. What do you want to do? And my mom says, Why would like to not go down without a fight? And he says great, he scheduled the surgery now. My mom has a complete hysterectomy. On top of the cancer on her ovary, they found more cancer in her uterus. And some of that cancer had jumped to her omentum. I think I'm saying that correctly, which is the lining sort of inside of your body. The surgery took much longer than he expected. And the next day, I'm on the phone with my mother and I'm like, How's it go? Mom? She was, it's great. I'm fine, big, you know, she's cut from stem to stern, basically right down the front of her. And I said, How's the pain? She was no pain. I'm all good. I said, well, they got you on the good stuff, mom. And she goes, No, no, I'm taking Tylenol and ibuprofen. So my 79 year old mother had a complete hysterectomy with complications, right, they fixed a hernia while they were in there. And she's managing the pain on over the counter pain medications. And a month before that, there was a man willing to let my mom die because he said she wouldn't tolerate the surgery. So that's a very, very long story. Well, it segues
Jon 31:03
perfectly into one of the real things I wanted to share. Go ahead, I mean, really perfectly. Um, I had tried at various times in my life to rope things under control, as you can tell about my story about my weight loss. And I'm actually I put together a video of my tide pool stats that I animated across last year. And you can see that even during the dumpster fire portion of that, which I call it, there were weeks where I really, quote unquote, tried. And I would really work hard to modify my diet and everything. But the problem was, I was on an ever, enormously increasing amount of long acting insulin. And so what happens when you're taking 140 units of Lantis, or Joseba, you can't stop eating. And by that I don't mean compulsively or obsessively, I mean, to stay alive. So if I take that much insulin, and then I decide to have a very austere nutritional day, the Westmalle ma rescue squad is going to visit me again. And that happened three times in the last year. But over the years, I would go to my general practitioners. And I would say, because I'm a very smart guy, I pat myself on the back. And I would say I want to reduce my long acting insulin. And I would start like to start using fast acting insulin to Bolus to manage the meal time highs or event highs and not have this. Elephants put on my neck. And always, it was eat right, lose weight and get exercise. And I really appreciate that you call that out? How do you tell somebody between three and 500 pounds to do that
Scott Benner 32:47
do better? Great thing.
Jon 32:49
It's just insane. And especially when this guy is telling you things that map, this makes sense. And
Scott Benner 32:56
in the bigger picture, you don't get the 500 pounds, because you eat too much only right. You get there. But he should be looking at you saying Do you see a therapist? Yeah, a psychiatrist, do you?
Jon 33:09
That was part of the problem originally.
Unknown Speaker 33:11
Right? Right. Yeah. Right. So
Jon 33:12
that's what got me there, you know, was the therapist and the psychologist, but it's not
Scott Benner 33:17
just what it's not just what gets somebody there. It's what holds you there. Right, right. There's there's variables to a person's life, just like there are variables to managing your type one diabetes, or type two diabetes, there's things that happen, that you don't necessarily see that maybe even others around, you don't see. That are main stressors for what's happening. Well, actually,
Jon 33:39
my, my brother, as I call them, and kind of his bro dad, he was a hump. Well, that's a whole nother story. But these are his kids, actually. And we're not related by blood. But there's a lot going on there. And we came up with the phrase that everybody gets what they want, and that it applies in certain ways. So the reason that that was staying there was because it was a mechanism that was serving a need.
Scott Benner 34:00
Yeah, yeah, no, absolutely. I
Jon 34:01
mean, I wasn't fat because I have food. I wasn't fat, because we're predisposition to this or that I wasn't all those things. It was I was desperately trying to cope with stuff. And that was a coping mechanism might come up with
Scott Benner 34:13
100%. And so a doctor telling you stop doing that. Well, that's
Jon 34:18
not doing what I think is working for me. Right, right. Right.
Scott Benner 34:21
keep in your mind, it's saving your life, by the way. And it's the same thing as when my wife had hypothyroidism before anybody would give her medication. Her life was crumbling around her. And they'd say to her, you just get more exercise and eat better. She's telling them like, you don't understand six months ago. I didn't do anything different. This wasn't my situation and you got to get more exercise and sleep, you know, get some more sleep. Are you getting enough sleep? It's just it's, it goes on and on and on. It happens constantly. It's going to happen to you. If you have type one, it's going to happen to you if you have type two, if you've been abused, if your thyroid stops working. It's going to happen to you if you're 79 you have cancer. thing everyone has to remember is that no one cares as much about you as you do. Not not even doctors. And even when you're caring poorly for yourself, right, right, it's exactly, it's not that you're not trying, you're just through forces and variables in your life and your psychology and, and in a number of different ways, you are making the best decisions that you can, and you are following the best paths that you can. And it's super simple to say just shut up and stop eating all that or, you know, you know, be normal, put the cookies away, you know, blah, blah, like whatever crap thing somebody might say to you about any number of anything. It's not about this, it's about everything. I hope that I hope that people listening can understand that what I'm trying to say is that everything we do, is influenced by more than you can see, even when it's you. And so coming up to someone and saying just do it differently. Is it kindred to like, I don't know, like finding a depressed person and saying smile? Well, thanks, because I'm depressed on purpose, because I forgot the smile, because that is absolutely silly. And it is the state of how we care about people, medically, most of the time, and often all of the time, we just don't see it, because it happens to certain people on certain levels. And some of you listening are lucky enough to be driven in the right way, educated in the right way intelligent, which you cannot take credit for. So that you can hear this basic advice. And then you take it home and put it into practice for yourself, really think about it. Who's really doing this for you. diabetes, right? Like it's a common thing. We always people say it all the time, in six months, you will know more about type one diabetes than your doctor does. Well, how though? Should that be real? Like, are you serious? Because I live with it? He's the guy. She's the person. Maybe she should try it? Maybe she should, you know, you know, engulf herself and diabetes till she understands it as well as I do. Wouldn't that make sense? Because the doctor that fixes your heart, they immerse themselves in heart surgery till they understand it better than anybody else. Why is this? Why is this acceptable? And that? The answer is I have no idea. This is how it works. This is this is the state of human beings helping human beings in 2022, this is the best you can hope for. And if you don't advocate for yourself, if you don't do the things that you need to do, and you expect somebody else to do them for you, you are going to come to a bad end. That's all now I'm all upset, John this early in the morning, I'm sorry. Well, you
Jon 37:45
know, I things come to mind, there's things I wanted to make sure to cover in this interview. And I also had in my mind, like, as the shows as the podcast unfold, even if it's something completely unrelated to me menopause, let's say, um, you, you and your guests overall, and expose different thoughts and ideas that are valuable to me. And I'm so I thought to myself, when I'm doing this, like, what do I expect? Also, since you don't pre interview, you don't discuss, there's no images here, you just call in and go. And that's very real in live. And I was like, well, where's that gonna go? Because he's, I'm very controlling. And I find that you know, as I've heard you touch on the right thing. So I want to really quick run through a couple of things. You were right on here, go and kind of the brighter side, like, where does it turn around, because I talked about a lot of kind of, you know, daunting kind of things. And so they would always tell me, you know, take care yourself, blah, blah, blah. And so this time, my GP a nice guy, but the same bad advice, moved out of state, I got a new GP. And this guy was brilliant, because I went to him again with my pitch, right? I want to get fast acting insulin because blah, blah, blah, and blah, blah, blah. And the guy looked at me and almost detached, but not but you know, he said, You need to go see an endocrinologist, would you like a referral. And he was like, we're not really going to talk about that Gaussian, Endo, and not in a bad way. And so I saw her a month later. And I like to tell the story, because what I did is I told her look, I'm the owner operator of this guy here. I'm the captain of my ship. And I'm looking for a chief medical officer. And I'm, I'm interviewing you for that position. And the key here is that you have the keys to the medicine locker. I don't and you have the skills and knowledge to assist and advise me in running my ship. And so can you work with that? She said, Well, hell yeah. And she said, Is your pharmacy such and such I'll send out a prescription for him a lot. And I give and so what she did is she gave me that that chart, I forget what you call it like 150 and above do a unit 250 Do another 200 Do another unit etc. And she sent me on my way to figure it out, not in a bad way he was she is incredibly overworked. And she's a saint, because I'll tell you what happened in that meeting after after she said, I'll send in the prescription for the Himalayan. She said, Have you ever thought about a pump? And I'm gonna take two. And I never thought about a pump. And for me a pump was somewhat akin to a backpack, with hoses sneaking out of it, and you know, some, you know, thing. And I thought, well, that's not for me. But then I thought, hmm. And she said, Yeah, I said, Well, tell me more. And she said, blah, blah, blah. She said, There's tube and tubeless. And I sleep like a blender. There's just no way a tube situation goes to work. And then she mentioned, you know, the tubeless thing. And I don't want to turn this into an advertisement for Omnipod. But I'll tell you what, I live 40 minutes out of town stopped at my pharmacy and picked up the human log. I'm a real smart guy. I'm all about the Google and before the Google the Dewey Decimal. And I learned things. And so I never had filled up my mind with what a pump was. So I got home, and I got the human log in my home, let me check that out. Let me give a dose of that or whatever. And I'm reading about the Omni pod stuff. And I get a call from the from the Omni pod rap. And at the time, I was on Medicaid because my business imploded. And, um, you know, that's COVID story, right? And he said, Well, you're on Medicaid. And the funny thing is what Virginia has done as of like, last month, you're good to go. And we'll ship you out bunch of these zombie pots.
And that was fantastic. And now all of a sudden, I was the owner of a whole new thing, right? fast acting insulin, and now even a pump. And so I was devouring, you know, just screens, pump screens and tabs upon tabs, and I was learning about it. And then the only product rep called me and that happened. And a bad experience with my pump trainer, she got me started said we would talk again the next day on three, three days again later. And it took 10 days to get hold of her. Well, in that period of time. I had read read before about artificial pancreas and I studied up on it. And I built loop and started running loop. And I was running it open loop and fiddling with it. And then I figured well now I'm gonna need a Nightscout. So I'm very data driven. But I was going through crises, you know, the change and everything. And I was I was really going through, I just didn't have time. And I just wanted to get the thing up. And I'm not trying to make this a pitch. But I found a business that offers a prebuilt you just sign up and your Nightscout is there. And I work there now. And I have a small tech support as you're getting started. And I mentioned that in my documents in my tech support tickets. And you know, next thing you know, I'm working there, and I do well, most all the tech support. And I also do engineering. I'm a Unix and systems engineer. But um, it just shows how deep that getting things. So that's a side thing. But the important thing was I was looping right away. And the other important thing is that so I'm working with them last and I'm getting to meet people who are very familiar and intimately involved in the whole thing. And they've told me repeatedly that we never thought this would be something type twos would use. And so here's an interesting thing is I see peptides that I've had now since I'm getting back on to take you realizing I'm a diabetic and that I want to not that I want to live I want to live comfortably until I die. You know I'm saying I mean I want to live but this is just like stop the terror. And I'm in so anyways, there's this thing about we never kind of thought work with type two. So C peptide, right? So I am insulin panic, which is an unusual thing for type twos. Type ones are insulin dependent, which means they don't make sufficient or any insulin as you as we know, you know, it doesn't mean absolutely zero, there's a little bit of variance, but it's pretty much you know, none, but I am in that boat. So I'm at risk of DKA and other things. And I'm learning to understand and live with that. And it may be that, you know what it is is we know that at the end game of type two, you lose beta cell ability, right? And I don't have autoimmune and so things I've come to understand is I don't have the complications of autoimmune. I'm not allergic to this. I'm not allergic to that. Hashi motos, celiac. All the other things I've heard about learned here. Those aren't on my back, right? I can eat poison and do fine. You know, I'm saying I got that kind of cost. I can eat class shards mixed with poison and I'm good. No allergies or nothing. So but I am insulin panic.
Scott Benner 44:45
Hey, John, let's stop for a second just to find that for people just in case that's not a word you hear too often. But it very simply. I want to make sure you're using it the way I understand it. It just means that you're you're just producing an inadequate amount of insulin Right? Correct. Okay. So, and most type twos produce a zone that gets overwhelming amount of insulin, right? That just doesn't get used or, or. Right. And that's why we have 200. And you 500 Right, right. Okay, go ahead. So, hey, so real quick. Let's stop and go backwards for a second before we get too far away from this, please, prior to them putting you on insulin. Your management consists of I'm guessing Metformin, Donald's mix. Where you were taking you were taking Metformin, what was it doing anything?
Jon 45:37
How I mean, how could you even tell us pissing into a tornado?
Scott Benner 45:40
Okay, was there anything else they were giving you besides eat right and go for a walk?
Jon 45:45
No. And but I'll tell you right now, I'm on a GLP. One, I have been for many years as trans transition from what's it to ozempic. And on SG LT two Jardiance. And those are additional drugs that are not indicated for type one, you don't want it for type one. And as an interesting thing there because those can complicate insulin therapy. As you may have heard, Jardiance and stLt. Two can lead to hypos, it very much complicates things.
Scott Benner 46:16
Okay. I'm sorry, I get confused when people say it was that big, because then I hear the jingle in my head. And if I don't, if I don't play it out, in my mind, I can't get rid of it sometimes, but it's gone. Now. I took care of it while you were talking. So
Jon 46:32
you're the ranking that sometimes I'm a little bit envious of type ones. I'm joking, right. But they don't have to dial in those elements, they do have to dial in the attendant on immune world, right. But you're not having to manage those drugs and insulin at the same time. And the other thing I want to point out is my diet, I eat less than 25 grams of carbs a day, all from fresh vegetables. I do not eat anything that I don't prepare and cook in my house from raw foods. I'm not some hippie dippie thing on this. It's just science, pure science. There's hippie dippie elements to me, but this is nothing other than medicine. Okay, and if I do eat a sec, I eat one meal a day. And if I do eat a second meal, it's an omelet in the midday. And that's just what the important thing here is. That's what works for me. When I see your kids out there having chocolate chip waffles and you know who I'm talking about? If you're listening to this, I live vicariously through the chocolate chip waffle. But I've had every card cheap and expensive, deep and rich that you can have in a human lifetime. And I've got memory banks. Cool. I don't need to go there.
Scott Benner 47:41
I'm starting to change that
Jon 47:43
happened to me this time. Yeah. John
Scott Benner 47:45
at 50 years old. I'm starting to understand why older people stop eating.
Jon 47:50
It's a it's a it's a bother. I just
Scott Benner 47:53
I've had it already. I'm good. It's not gonna be surprising when I eat it.
Jon 47:59
That I want to say also, I cook the hell my kitchen is a temple. I do. No, I'm serious. And I love to cook. And I cooked with these kids last night I made the most beautiful Faroe Islands, salmon, and steamed brussel sprouts.
Scott Benner 48:14
I bought two steaks yesterday, which I will smoke tomorrow. And then I've
Jon 48:20
been taking up smoking.
Scott Benner 48:21
Yeah, I will slice them down very thin, and eat them as I walked. But like a couple of times, they'll reach in and pull a couple slices out and eat it like that. And that's the happiest I'll be because I'll be you know, I don't know, like I'm just not snacking on snacky stuff and etc. But But, but I want to understand you start using insulin. You go pretty much right to looping. Is that correct? timewise you're not too damn straight. Yeah. Okay. All right. So insulin on the pod looping. When do you find the podcast in those steps?
Jon 48:55
Right around there.
Scott Benner 48:57
Okay, find the
Jon 48:57
podcast because I'm all I'm a heat seeking information missile.
Scott Benner 49:01
Okay, well, that's beautiful. And then at that, so I want to Timeline this at that moment. When you find insulin, what's your weight?
Jon 49:11
My clinical weight measured in the office was 337 pounds.
Scott Benner 49:15
Alright, so your 337 when you find when you get on insulin, you also make other changes to eating at that point. Where does that come after you start having some success.
Jon 49:26
So you know, the funny thing there is it starts happening right away. But what's really cool is to see continuous process improvement and the results. And so it started really fast. It was really getting dialed in, but now it's much much much more refined. Right? So at the time, I was still doing a thing where I'd be like Look, don't eat compulsively don't eat all the time. Don't eat all don't graze through the night and more like grazie was kind of like a snowplow on the highway. And just knock all that off. But then my comfort was a delicious sourdough sandwich recipe If cheese vegetables, and you know those huge planks of sourdough bread. Oh, there's nothing I love you the one you know, I'm talking about through a big bowl right from the middle slices,
Scott Benner 50:10
I would toast it and throw a little bit of sea salt over top of it to
Jon 50:13
stop it. I could just live a life of that. Of course. Yeah, by the way, right now, right now, in my head. I'm just getting the memory back. I don't need it. But I certainly remember it. I love that sandwich. But that was 50 grams. And I'll tell you another thing. So the CDE, the educator that they hooked me up with their who's dealing with a million people, it has a very conventional outlook, told me I should be eating 50 to 65 grams per meal, three times a day and 215 grams snacks. And when I got to just when I actually had the Bolus for those and watch the effect, oh, I should also tell you that I was using Dexcom for four years to the week before I started this, okay. And all it was was this damn alarm. And I think that my friends would call me out
Scott Benner 51:02
here. Yeah, you suck. John. I bet you that's what it sounds like when it was beeping.
Jon 51:07
Yours. My friends, I'd be on the phone or something like this, or even with some people, I don't get out what it'd be like me, me, it'd be like that look. That will look like it. They were like the extra volume to the alarm. Right?
Scott Benner 51:22
Hey, let's go on to that for a second. So where was that high alarm set?
Jon 51:28
I lived my life between 250 and 350. Okay, so I'll tell you what if I woke up in the morning, under 150, it was a glorious victory.
Scott Benner 51:40
Okay, I've heard people say that wearing a glucose monitor for someone in your situation. Can for some people offer a window into things that they didn't know what was what was happening, and that that could help motivate them towards change. But it may not work that way for you.
Jon 51:58
Here's the important Well, here's the thing. Now, I'm so glad we're here. And I love your interviewing skills. And it's both a matter of knowing the person you're talking to you somewhat listening and your own knowledge about these things. But this is the important part. It didn't. And the reason was because they didn't have the tools. Now here's the glorious thing. So that's why I was getting tea. She said Do you want a pump, right? And then the guy says your pumps are on the way. And then I'm googling what the world of pumping is. What is this stuff? How does it work. And then I got loop where right now I run loop Dev, I run something called a switcher patch. So it allows me to just change the amount of the auto Bolus, there's a level at which auto Bolus switches from Basal adjustments to auto Bolus is also a new negative iob thing. It's all very cool. So for me, it's like science, science science, right? And if I have the data and the tools, and in other words, the knobs and the dials now I can have effect before it was like anesthesia. That's what the treatment was pumped, jam this stuff through your leg and roll and exercise. And so it was this big veil of ignorance and a thing attached to me that would just tell me how bad I was doing. Yeah, yeah. And so the thing that the crucial victory for me was having the tools to adjust the data and to get the data where it needed to be. And to understand that the data was a true reflection of my health in the moment. Is that No, I'm important as I want it to be.
Scott Benner 53:25
It's perfect. It makes perfect sense.
Jon 53:27
And so that, for me was the liberating thing that changed things. And so I told you, I've lost before, right? I've been to at before, but through those journeys, one of them was like this liquid diet thing with the hospital and the whole thing and the other was similar, you know, and the best one was that first 100 pounds I lost. Well, but that was bringing me from the brink of literal death. Right. In other words, I think I dropped down to 400 Because I could maintain that wonder.
Scott Benner 53:54
Yeah, so 500 It's, it's critical mass, like something bad's gonna happen really fast. So you
Jon 54:01
got when you cannot perform basic daily intimate hygiene needs. Are you with me? Can't wipe your ass you can't wipe your Ascot you know, I'm really like out here and i
Scott Benner 54:15
By the way, there's a huge part of me that wants to call the episode can't wipe your ass Scott.
Jon 54:23
Oh, yes.
Scott Benner 54:24
Yes, yes. Yes. And I and I made a note to thank you for saying last year at some point in the episode saying which you said ostheer earlier and I was like, well, there's a word I don't get too often from people. I appreciative of that. But so Okay, so you
Jon 54:42
you overcompensate with vocabulary? Yeah.
Scott Benner 54:44
Well, I like a nice word once in a while. So you dive into this whole thing. How long ago? Is you starting insulin on the calendar?
Jon 54:53
See, that's really hard to nail down. Right. Okay. Because again, it was like a big veil of ignorance. You know, I'm marketing In my life I can remember was where I was when I had a thought 20 years ago, but I can't exactly fix that, right? So you fix it with where that doctor's office was and where you were at the time kind of thing. And in my mind, that's got to be in the early 2000s, like, early 2000s. And I remember the doctor saying, this is some new stuff. And that was Lantis. Now, I know Lantus was kinda like 99 ish or something. I don't know. 995, maybe even I don't know. But I guess it was new to him, right? Because he was like,
Scott Benner 55:36
Well, John, it's funny, I knew this, but he got away from me too. So all of this, any success, I'm making finger quotes that you had over the last 20 years, like, you know, waking up at 150 Being a good thing, most of the time living over 250, that was with a background insulin happening, you had a Basal insulin going on in you, and that was still your outcomes. And you know,
Jon 55:59
it was 60 for a long time. And then it went up and up. And then it was 80. And then it was 100. And then it was 120. And then it was 140. Wow. And that was to have that kind of profile, right. And then I would have an austere day. And I talked to my friends at the end, I'll tell you funny thing about that, um, lows, as you know, lows aren't the same as they were, then I can, I can be 50. And I don't get there. But I could write I mean, I really do a good job of not having lows to my lowest lows. After the first couple, I had a 51 or 52. But my lows now, run 6165. And I actually set my actual range down to 65. Okay, because I'm not too worried between 70 and 65. And I'll tell you think about that, Scott, thank you, I have learned not to fear insulin, because I had tremendous insulin trauma, tremendous and feared the hell out of it. And now I'm making a move to the powerful stuff, right. And, um, it was frightening. And what I got from the podcast got more than anything, was the context to understand the use of insulin. And that you don't have to be afraid of it and that it's a tool that you can use effectively.
Scott Benner 57:16
That's great. It's long been my feeling that you can't possibly take good care of yourself with manmade insulin if you're afraid of it at the same time. And, and that's just I've been, I mean, before the podcast, I would write about it, just trying to get people over fear, etc. So okay, so blanches forever. Now suddenly, you're pumping so you know now your Basal insulin receiver for a while, right, you got to receive and there's
Jon 57:48
receivers even worse for what's going on with me because receivers halflife is double. And you can't get out from under Lantus. But you sure as hell can't get out from underneath receiver. That's something you got to deal with for days. Right.
Scott Benner 58:00
Gotcha. So when we go to pumping, how long ago was that?
Jon 58:05
That would be I started pumping July 1 of last year. Oh,
Scott Benner 58:09
okay. No, yes, yes. July 1, July 2021. At that moment, you weigh what?
Jon 58:16
330 psi. I mean, I 337 like two weeks before that. So let's call it 330. All right.
Scott Benner 58:22
And now we're in April 2022. May, June, July, you're not you're only nine months into this really? Where's your weight now?
Jon 58:29
Under? You know, especially the bigger you are, the more variance you have through the day. So morning weigh ins are always the best. And I'm consistently coming in under 272 For the last four or five days.
Scott Benner 58:40
Wow, that's really something so you're down. Jesus. So yeah, he's a calculator about 6065 pounds maybe. And in nine month, and the end the the change is your managing your hands. It's funny, because I think people would think, Oh, higher blood sugars. You must be that must be better, because you're probably losing insulin, like I don't mean better like that. But I mean, you must be losing weight, because your blood sugars are high all the time. But that wasn't even the case. You know, how since ever even thought of that some eating disorders. You know, I mean, we've talked about it enough. Now, please don't want to do this. But you can manipulate take your insulin away, make your blood sugar higher. And you know, you almost like when you're you know, when people are diagnosed, like I was so skinny, right? They were so skinny because they were in DKA. Probably they needed insulin and they didn't have it. So some of the eating disorders involve you manipulating insulin to keep your blood sugar higher, so you'll lose weight, but my point is, is your blood sugar was plenty high and you are not losing weight. And so now you've got your
Jon 59:46
treating with metformin, McDonald's, you know,
Scott Benner 59:52
yeah, and you're treating with nothing, you're not eating well, and so now you're eating obviously, how many how Do you think about you think about his calories during the day? No,
Jon 1:00:02
I do not give one whit a calories are meaningless to me. All I care about is my carbs and my glucose because everything else will follow. Gotcha. If I'm treating my carbs, right, and I'm not having to use massive amounts of insulin for it, and there's nothing wrong if you're 17 or 35, or whatever the hell and you're not obese and so forth, then you know, have all the cake you can please and think about me while you're having it. But I don't need that it doesn't work for me, right? So part of my metric or as it were, is reduced insulin usage indicates reduced need for insulin, which means less glucose, which means less nutrition. It has to be good nutrition. That's the important thing for me. I cannot spend my my grams on crap.
Scott Benner 1:00:52
Yeah, the glycemic impact from the foods
Jon 1:00:56
that I just can't spend it on crap. If I eat something that has carbs in it, it has to have nutritional value. Good nutritional value, it has to be cauliflower. It has to be broccoli. Carrots are, you know, higher, but they work really well for me, right? I don't do potatoes. I don't do rice. I don't do I will have like two slices of Dave's than sliced bread a month maybe. Because I just the stars line up that I don't have vegetables ready or I didn't go to the market or whatever. So I have an open face. Amber. Yeah. But anyways, yeah, the important answer your question there is I only care about carbs. And I don't have a protein rise. That's interesting. I thought I would get a protein rise because the volume that I'm eating it, right, like we'd have to get it somewhere. And so what I think is going on is there's just so much coming out of my fat.
Scott Benner 1:01:46
Do you have any feeling that your is your own insulin production helping you at all or no? Right? Yeah,
Jon 1:01:52
I mean, still in a panic there. Yeah, there's so really the answer your question is I so part of that answer is where I am right now is I have an agency of five three measured at the lab on Friday and compare ation for this. And my coefficient of variation and standard deviation are both 10. And what's the other factor my time and range? 65 to 120 is 96%. My time and range to 140 is 100. And so that's kind of bragging in Hell yeah, right, take your victory lap, but more, it just reflects the control I've been able to achieve. And you can't really I think you can't really, you have to have minimal variability to do that. Right? I mean, you have to know where your sugars going.
Scott Benner 1:02:42
Yeah, it does. Does that make sense? It makes total sense. I'm gonna say something, please take it away. I mean, not the way it's gonna sound. But the podcast helped you with all this, right?
Jon 1:02:53
You know that. So there's a thing I take comfort, what I get from the podcast, is I enjoy your interviewing, I'm in the car, or whatever, I listened to PBS, I don't listen to music, unfortunately, I do at home. But I'm all about the data. And I'm learning those things. And this has a very, a somewhat, you know, pbse kind of tone to it. It's very informational. There's a rich amount of information. So I get that from and I get community from it. And the funny thing is, this is largely a type one community and even within that, it's largely a family community. And neither of those things am I. And yet, I get a tremendous amount of community from it. And I wanted to do some shout outs here for some names, but I realized I couldn't get them all together. But there are a few people out there that I recognize and hello to you that have typed to, and are not afraid to talk about it and understand that, you know, whatever it amounts to you have take responsibility for your health, right and do this thing. Whatever was unfair, is still unfair, but you're the person that's carrying that burden.
Scott Benner 1:04:01
I'm, I'm incredibly proud of you. I know that that's a weird thing to say, we don't know each other, we've never looked each other in the eye. And when you reached out to me to tell me how you were doing, or when I see you in the Facebook group talking about how you're doing. I mean, if the podcast was valuable to you in any way, like I don't care if it's about using insulin, or if it's about community or if it's just about making you feel better in any way at all. I take a lot of I just take a lot from that. And it makes me feel terrific. And it and it to me kind of proves out the idea that anybody using insulin would find something valuable about the show or those with insulin, Scott. Yeah, that's really
Jon 1:04:41
one of the main things and community and really within that you do a good job in the group and it's not hard. I've run some groups in Facebook that have a few 1000 people very heavy participation for a decade, and we don't tolerate nonsense. You're either in there because you want to be there and you enjoy people. And if you're one of these slike zombies, you just need to go and do that stuff some results. And you're able to actually give people a lot more leash than I would allow in my groups to catch themselves and recover, and then they do. And that's a pretty good feeling, I'm sure. And it's a good feeling as members of the community to see those people understand the vibe in the group, which is to be supportive, non judgmental, and open minded is an important thing. And that's something I get out of all of your, the after dark episodes, we could do a hell of an after dark episode,
Scott Benner 1:05:33
maybe we will one day, John. So it's kind of like those
Jon 1:05:37
60 minutes or whatever interviews where the they're in the shadow and their voice sounds like this.
Scott Benner 1:05:43
I actually, I tell you, what, if I knew how to do that, I have an episode I could release, but I have one recorded. I don't want to say they work in an endos office. And they basically talked all about what they think goes wrong, and it endos office, but it's so obviously this person that I can't release it, they'll get fired, and I can't figure out how to change the person's voice.
Jon 1:06:07
I wish I told you I work with people that are meaning to use Nightscout and loop and not so into building it. Right. And um, so I spend a lot of hours not only do I do engineering, Unix, and TCP IP, you know, networking, all those kinds of things. DevOps, but I also do the support. And I probably spend about 12 to 20 hours a week talking to people about how to use these things and talking about their diabetes, I'm not, none of the advice I give is, should be considered nothing I say should be considered advice, medical or otherwise. But every single one of them I work with, this is the things I tell them about. And I tell them about, I tell them, they need to go to Juicebox Podcast. And I tell them that Integrated diabetes is out there. And the funny thing is, it's not because of you endorsing or doing those things, it's because that's my endorsement, based on my observations of what works and I think that people out there newly diagnosed or diagnosed for a long time, but not on their game or feeling they're not on their game. If they listen to this podcast, if they listen to the Pro Tips series, from beginning to end in the order that's intended. They're just going to come away with with a real journey begins level knowledge of what to do. And then they just practice it and they ask questions and they can go through it. And that's for me what this resource is that you've created. It's an open non judgmental community that teaches people how to use insulin.
Scott Benner 1:07:39
Yeah, you know, Tony, by the
Jon 1:07:40
way, I've been wanting to say this for a long time, Scott, go ahead. I call you. You're gonna chuckle I call you the prophet of insulin.
Scott Benner 1:07:48
But that made me laugh. That's exactly what
Jon 1:07:50
I say. I say Scott Benner is the prophet of insulin.
Scott Benner 1:07:54
I am, I have to tell you, of all the wonderful things you just said, it's possible if I had to rank them in the order that I'm most proud. It's of the part you talked about inside of the Facebook community, giving people time to get through whatever thing is happening to them that caused them to not want to be part of the community the way you described, but be a contrarian, or you know, be difficult. And I and I want them so badly to get to a better place
Jon 1:08:23
than touched on this in a recent episode is that people are so angry at their diabetes,
Scott Benner 1:08:27
dads, and it's so understandable. I can't, I'm not going to be the one. Like, look what you've just explained, right? Or what any number of people talked about coming on the show or what you see online. The success that these people are happening having? I don't who am I to keep them from that? So if they show up in my thing, and they're, I don't know, not not exactly, you know, ready to have conversations or feel good about things or whatever, and they they lash out or they're, they're difficult or trying to stir the pot or whatever it is they end up doing. I don't feel like I'm I'm not the I'm not I'm not the judge. You know what I mean? Like, I don't get to say you don't learn about Pre-Bolus thing. You're gonna be you know, who am I to take that from them? I've just seen so many people, adults, elderly, children, parents, everyone, right, you know, red, yellow, black, green doesn't matter. Like all these people have these experiences and their health gets better. And I am not going to be the one to stop that from happening to them. So I try my hardest to shepherd them through whatever's going on remotely from my desk, and now Isabelle helping in the Facebook page as well. She
Jon 1:09:42
was just wanting to get a break and hi so funny. I was just now waiting for the break so I could mention Isabel
Scott Benner 1:09:50
Yeah. So she she's such a great way she'll be on eventually. I imagine Hold on one second as I text my mom that I'm busy. Give me one second here. Um
I don't, it's got to be back in the oh my god, it's must be over six months. Now, I get a note from this person that basically says, I see what you're doing and I want to help. And that says, That's a scary proposition for me, because you've described that I'm doing okay, you know what I mean? And I know why things work. And I know when to push, and I know when not to push, and how can I bring another person into this? Because they're not gonna understand my sensibility. But I get on the phone, and he or she is a grown person with her own children. And says that, yeah, he she, but she knows what I'm doing. Like, like, I felt like when she started explained to me what she thought I was doing. There was part of me that was like, is she in this room? Like, how she, like, she really just got me and ice and now Now imagine this situation on them? It's not it's not a fun or easy job. I can't pay her. She just does it. Through kindness for other people. And I can't wait. That's why people that's why people write loop. Yeah, no, of course. I mean, John, it's insane, right? For all the doctors and all the institutions and all the companies, your your entire story about how you escaped every medical thing that was happening to you. Basically, all the touch points are aware of nice people in the world who are also struggling with a thing that you have came together and did a thing and made it available to everybody else. And I want to tell you something I might sound angry about in a second. I don't mean to but it just bothers me so badly. When I started this podcast, I got a note from a person who told me that I was going to hurt somebody by telling them to be bold with insulin. And to that person, I say if you if you are here today, and you hear this episode, you please hear that it it saved John, and amen. Yeah. And I know how many people listen to this podcast, and how often it is downloaded and streamed and listened to and I won't say those numbers specifically out loud. But I will tell you that more people will listen to my podcast today, then we'll listen to probably every other diabetes related podcast this month, combined. And so
Jon 1:12:26
you need you know, honestly, though he only reached 100 people.
Scott Benner 1:12:29
Oh, it would be amazing. And it was it used to be amazing. John, I used to trust me first month of the podcast 1300 downloads. I'm going to tell you right now, there better be more than 1300 downloads in that hour. You and I are talking or I'm going to be like, oh, something's wrong. So,
Jon 1:12:45
you know, like some of the time this makes it to the Aerobie a million.
Scott Benner 1:12:48
Oh, please, the show's gonna hit 6 million total, soon, a week or so. And it's very possible that it could be at 1112 13 million in a year.
Jon 1:13:03
And the important thing there is that's an indicator of the reach.
Scott Benner 1:13:07
Forget the reach John, calling it a prophecy makes me uncomfortable. But
Jon 1:13:11
the I use it humorous. probably hear the smile.
Scott Benner 1:13:14
I did. I did. I just got to make sure people don't think I actually think but
Jon 1:13:19
not it's really you're a voice in the woods, telling people insulin is good.
Scott Benner 1:13:29
I'm telling you, if you need insulin, you need to use it. And that's that's that and it's not stalking if you need it. It's not stalking if you need a job. That's Bolus thing. You know what I mean? Yeah, point point is, is that is that people need, they need the truth. What they do with it after that is not my business. Right? If if someone hears bold with insulin, and decides to give themselves 20 units when they need to, John, I don't know what I can do about that or not do about that. But I can tell you that I don't think it's incredibly likely that someone's going to go from a two unit Bolus to a 20 unit Bolus and hurt themselves. But what I think is important, and what I have seen proven out over again, is that part of my job is really just to be a coach. I'm sort of the guy that slaps you on the ass while you're running out on the field and goes, you can do it like that. That's sort of that right? And how are you going to do that? You're going to do it by understanding how insulin works. And you're
Jon 1:14:26
there's your every time that you turn a lap, you're there saying that? Yeah, we're gonna crowd the crowd behind behind him to the side of you is saying that, um, it's hard not to want to finish each lap. And what
Scott Benner 1:14:39
it does is it draws other people in from the sidelines, and then they jump out there and they start running to the dance part. Yeah, it just, it's so the whole thing just makes sense to me, and it always has. I've never understood this idea of like, Don't share your agency. It'll make somebody feel bad. What about for all the people? That's,
Jon 1:15:01
that's that's a thing for me, I find in type two groups, when I share my success, there's some outright blatant hostility that goes down.
Scott Benner 1:15:11
Yeah, but it's helping way more people than the angry people. And I can tell you from my experience that sometimes those angry people, those people who see that and go you like, they basically want to be like, go to hell, you know what I mean? Like, I can't accomplish this, don't rub this in my face. You know how many notes I've gotten from people who said, it says something to that effect. And then six months later, I get a note from that same person who says, Hey, I'm so sorry about the angry note I sent you six months ago, my a one C 6.5. Now, and I understand what you're saying, and it just rubbed me the wrong way at first, but I was in a bad place. It wasn't you it was me is basically what the what it says. And if you don't give people the opportunity to figure that out, then no one's going to figure it out. And sure, we might not save everybody. But isn't it better to? Isn't it better to help five out of 10 people than zero out of 10 people? You know, I just that just makes that makes common sense to me. So anyway, John, I want to ask you if there's anything else you want to talk about, because believe it or not, I'm trying not to make your episode too long. So people don't get scared away by the fact that you have type two diabetes. And yeah, long episode. So I know
Jon 1:16:20
you don't edit much, but I hope I've given of myself well enough to be of use to people. And I'm out here in the community. And I, it's a bless everybody who's might be listening to this, you all are really a blessing to me and part of my victory.
Scott Benner 1:16:37
No, that's wonderful. I just, I can't thank you enough for doing this. And I do believe you'll be back on. But I just really appreciate this, John. Also, it
Jon 1:16:45
was very good that I had to wait eight months or so to be here because my story wasn't well enough formed and didn't have enough substance. So I would say to anybody, you know, who is invited or has an opportunity use those months to learn your story. I guess if that's what worked for me,
Scott Benner 1:17:03
John, that's a that's a secret of the podcast that I don't really say out loud. But I know Yeah, the I'm, I don't use the word blessed very often. But I am blessed that people want to be on the show so much. I do record almost every day. And at the moment, now we're talking APR 12. I'm full for the year. And I'm and I'm going to have to open up 2023 Pretty soon, but I'm trying to wait into the summer a little bit. People sometimes are very motivated. They they you know, they get lit up by something, they learned something or they're seeing something and they want to come talk about it. They don't even realize they're not fully formed yet. And so the six months the six or so months, you have to wait to get on the podcast is the great time for you to compile, compile, compile. So you can tell me Hey, Scott, like you do a great job talking to people all these episodes are really valuable, etc. But part of that secret there is that I don't just let people on who have a wild hair up there button. Want to come on real quick. Like, and I'll tell you three, two I came in. Yeah. Oh, you were shot out of a cannon when you first like reached out to me. And I was super excited for you. But I was like, not yet. And
Jon 1:18:17
put a fork in it. It still came out what
Scott Benner 1:18:19
Yeah, and maybe I'll tell you twice a year I log on. There's no one there. And I go, Okay, fair enough. I made him wait six months. I like that, too. Yeah, but But and then I just added I just spend the time editing. But I mean, there's no shortage of people who want to be on the podcast. And because they have to wait. And they get to, just like you said, they get to really firm up their ideas. That's why you get a good conversation. So I can't thank you enough again, for everything. For sharing yourself in that space. I think we're going to motivate more people with type two diabetes to to see the light for themselves. And and I think you're going to be a part of that. So thank you very, very much.
Jon 1:19:01
Thank you, Scott. And I don't know just keep doing what you're doing. And it's a tremendous honor to have been a part of the podcast and I really is and to share my little part of things and I hope that I this I hope this episode is not too embarrassing and is helpful to people.
Scott Benner 1:19:19
No, it's beautiful. It's a it's a really beautiful thing you did so thank you
I'd like to thank John for coming on and telling his type two story and remind you that if you have type two diabetes, I'd love to hear from you. I also want to thank Dexcom makers of the Dexcom G six and Omni pod makers of the Omni pod dash and the Omni pod five, go to dexcom.com forward slash juicebox or Omni pod.com forward slash juice box to get started Today where to find out more about their offers, or just read about their products. I want to thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast
actually, I guess if you want to find out about that Facebook group that John's in, it's the Juicebox Podcast, private Facebook group. It's called Juicebox Podcast type one diabetes. Go check it out.
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