#707 Printing A1cs

Howie is an adult living with type 1 diabetes and also the parent of a type 1.

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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 707 of the Juicebox Podcast.

On today's episode of the podcasts I'll be speaking with Howie he is a type one himself and the father of a child with type one. And I'm pretty sure that his wife made him come on the podcast. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Real quick, please remember, it would mean so much to me and to people with type one diabetes. If you took the survey AT T one D exchange.org. Forward slash juicebox. Go to the link. Join the registry take the survey takes fewer than 10 minutes can do it from your phone. You could do it on the potty. You know what I mean? Like you shouldn't sit that long. But if you're there, you could do it as what I'm saying. T one D exchange.org. Forward slash juice box. You have to be a US resident who has type one or a US resident who is the caregiver of someone with type one, take the survey support people with type one diabetes support the Juicebox Podcast.

This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by touched by type one go to touched by type one.org To learn more about their organization, or to get tickets for the upcoming annual event, which I'll be speaking at on August 27. in Orlando, Florida, touched by type one.org. Today's show is also sponsored by in pen from Medtronic diabetes. The pen is an insulin pen that does more than you expect from an insulin pen. I'll tell you more about it during the ads. But for now, you can go to ink pen today.com.

Howie 2:20
Howard's a whoops, don't want that. Take that back. I don't want say my last name. How we

Scott Benner 2:28
just say hey, oh, my name is Howard or something like that. Alright. Hello, my name is how we go. How are you? This is the most uncomfortable start to a podcast so far. How are you a parent of a type one or you have type one yourself? Both. Wow. All right, then now we're on to something. You listen to the podcast? I do.

Howie 2:50
So I've been listening to podcasts predominantly found out my wife. I mean, my wife is the biggest embrace of the podcast. Considering I've been diabetic for 42 years, I probably was a late adopter to the podcast. Most of this in candor has been in preparation. So I've listened to the Pro Series. I've listened to a lot of the recent ones to see and have those interviews or listen to how those interviews have panned out so I can be prepared. So your wife, the listener, she's more of the active listener to be candid with you.

Scott Benner 3:19
Oh, no, no, that's perfect. That's what I wanted to know. So tell me 40 You've been? You've had type one for 42 years. How old are you?

Howie 3:27
I am 44. So I was diagnosed February 18 1979.

Scott Benner 3:32
Wow. Wow. Okay, dude, first of all, you look super young. I appreciate that. To see you right before we started. You do not look. You don't look that and not that you're old. But you look really young. I appreciate that. So you were not my daughter was diagnosed when she was two.

Howie 3:48
I did actually hear that. And I mean, I've heard your journey. And that's pretty incredible that somebody with not that experience and doesn't sound like you're in the medical profession, New Zealand have recognized the symptoms. So kudos to you.

Scott Benner 4:00
I'm definitely not in the medical profession. I was. At that point, I was in the I was in the stay at home dad profession. Prior to that I did. Gosh, I worked in this little credit union where I did their graphic design stuff. And I actually collected debts for them before that. I I was basically a debt collector. I hated it. I was so good at it. And it made me sad to be good at it, if that makes sense or not. And one day their, their graphic designer quit and it was this really small place and I like I marched into the human resources office. I was like, I can do that graphic design job. And they're like, Do you have any background in this at all? I'm like, No, but I can do it. And I and the person had left kind of abruptly. So I I said come here. I went over to their desk. I sat at their computer and I opened up the stuff and I said Tom, I'll make something tell me what it is. And I did and they were like, wow, really? I was like, Look you can pay me less because I'm not qualified. I just wanted to be out of debt collecting so badly. So I was. So they gave me the job. And I worked there, right until my son was born in 2000. And then I've been a stay at home dad since the since the beginning of 2000. Yeah, so I had no medical background.

Howie 5:17
Well, I mean, hey, then you can be a doctor. Since you had no background in graphic design. It sounds like you pretty much could be a physician. So that sounds awesome. No, Web MD.

Scott Benner 5:25
Should I just go to the hospital, walk into your courses and be like, Hey,

Howie 5:29
sit down, watch me. Yeah,

Scott Benner 5:31
you can really underpay me, you're gonna save a ton of money. I mean, it's. But anyway, that's so in 19. Dude, I was eight and 79. That's a long time ago, how was mature first recollections of like diabetes management.

Howie 5:49
So I, I probably could remember going back to 566 years old. And it was mainly from just, I had very supportive parents. They managed it but didn't micromanage. I was never stopped from doing sports, I've never stopped from staying over people's houses. And diabetes in 1979 was much different than it is today. But my first recollection, Verlet recollections were probably lows at the time, because most of them happen at night. So I just remember, probably just low pass out events. And in the middle of the night, my parents supporting that, and sometimes even, you know, police in emergency would have to show up at the house, because like I mentioned, diabetes back then was quite different.

Unknown Speaker 6:33
Regular and mph, or lenti, how far back is 79.

Howie 6:38
So I did have both of those. I actually started on animal insulin when it was made with you know, pig fat. So I had that first, I was on NPH, I was on regular, I was on lenti. And I was on regular insulin for a long time. I mean, one shot a day and pH at night, six hour peak time, I might be wrong on that. Maybe it was 12 hour peak time. And then regular insulin would peak. And that's the thing. It was just you know, spray and pray basically,

Scott Benner 7:03
man, you are you're one of the youngest people has told me they've used animal insulin, I think.

Howie 7:08
Yeah, I mean, it's what's interesting is I actually was an avid injector in my stomach. So I really came, I actually had, you know, about swelling and hypertrophy from that, which actually to give listeners confidence has gone away. So part of my agenda that I actually wanted to at least discuss was my story and evolution of what diabetes is look like, how we found out when my daughter was diagnosed with diabetes, and what that what that has looked like, and then also just, you know, reinforce perspective, what it's like when being a patient of diabetes, you know, because what the parent probably goes through is very, very difficult. I always think that being the diabetic parent is much more challenging than being the diabetic patient. Because you can never opt out. There's not there's no off time. So if you're the patient, it just is what it is. So the parents seem that is much more difficult. So I would probably talk about the perspective since I've had both. So that's really the thoughts that I had, but yeah, you definitely

Scott Benner 8:09
you tried to evolve a lot. You tried to produce the podcast, I relaxed. I've been doing this a long time. I'm pretty good at this. Answer right through all those ideas. Can you let me be the funny one? I don't know. You're gonna you can try. I appreciate it. Okay, so, geez, two years old. 79. Your parents were so so you did get low. But it was mostly Yeah. Ever sleeping? What? How did they know? Would you cease? Or would you like was it sweating? How did how did you know you were low back then. If you were asleep, I mean,

Howie 8:50
so I didn't what's my mom, I don't think my mom has ever had a restless restful night ever. So I grew up on the East Coast. And I just had with Howard. So most of the time, a little bit of a helicopter mom would recognize lows during the day, I and then I was also trained to feel some of those lows. So there was no insulin sensors, the blood machines would take 120 seconds in order to record a blood test, big giant door that would flip closed, they weren't that accurate. So as a matter of fact, we used to actually test blood sugar just on urine strips at the time before we got the glucometers. And I wouldn't I wouldn't know at night. But some of that by the time my mom would come in, I mean, I would I'd be twitching I'd be shaking and then unable to swallow chocolate or juice. So they would have to put cake frosting actually in the side of my mouth. But because most of the time during the day my parents would able to we're able to observe and I was you know, more and more in tune with the feeling so I would manage it at the time.

Scott Benner 9:53
Wow. That's fascinating. You also made me think that I have an episode that's recorded with a tie Your mom and her her younger 20 ish college aged son. And they're from Long Island. And they were together on the episode and it was just, it was fantastic. Because she was just, she was as East Coast and and Long Island as you could. And she's lovely. And the kids like mom, you know, like it was just it was great. I can't wait for that one to come out. It really just like wonderful people. It's a great story too. But nevertheless I can I can really like imagine your poor mother like there's no, I mean, you think about all the information that's available now. And it just was really nothing right? Like you said it earlier, you said would you say spray and pray just put it in and hope nothing bad happens. Right and and try to live?

Howie 10:46
Yeah, I mean, there was no card county there was none of that so and that you take the same dose every day. And regardless of what you eat, or what your activity level was.

Scott Benner 10:56
And that's just the best they could do. And so your mom, your mom basically just hoped until it went, it got upside down. And then she she put it back again. Basically, yeah, but she probably tired. Do you think she still thinks about you?

Howie 11:10
Yes, I mean, both my parents are very involved. I mean, great parents, they supportive of all of their kids. So they are obviously involved in my daughter's situation. So my parents are worried about me nonstop. And what's funny is, you know, when you're on a plane and the oxygen mask drops down, it's always obviously put the mask on first before you assist the little one. So that's what my parents always have to remind me because my default instinct is if my daughter and I are both low is to treat the daughter before I treat myself. But my parents perspective is, hey, you need to take care of yourself. So yeah, they nonstop it's it's a perpetual worry when you're a parent of a diabetic

Scott Benner 11:50
were they like knocked over by new technology.

Howie 11:55
It's incredible. So it's a blessing, I think it might it's also a little bit of a curse. And I'll explain that. So yeah, they think Information is power. So my daughter has a plan that she can obviously have a phone and, and watch at school. So I can see in real time what my daughter's blood sugar is text, the school nurse, the school nurse makes notification that sent my daughter down. So that's incredible. What I think the curse part is, though is people are so reliant on technology that they don't recognize the symptoms. So as someone who like my daughter is getting lower and lower, and she's a new diabetic. So that will come with time. It's she's overly relying on the technology as opposed to recognizing the symptom. And sometimes I think that could be dangerous in the short term. So I think that's a little bit of a minute, a minor curse. But overall, the technology has been incredible. It's what they can do now has been really amazing. And hopefully there's some bright stuff on the horizon.

Scott Benner 12:52
Let me get your perspective, a little deeper on that. Is that a problem that you've actually witnessed? Or a concern?

Howie 13:00
fair question. I think it's, it's probably a concern. I haven't No, I haven't witnessed it enough. Because I do see actually my daughter saying I feel low. And I'm reminding her Hey, what does that look like? What does it see? What do you feel like? Hey, what can you see? What can you read? Because my symptoms I have, they've evolved over the years. And I've been able to recognize things later that I couldn't recognize when I was younger. So I'm programming at least asking, hopefully, asking questions, and my wife is doing the same she's very involved in, in my daughter's care, to be to help encourage her to recognize the signs. So it's more of a concern than then, then something I've

Scott Benner 13:40
seen. The reason I asked is because I remember when my son was younger, I would sit him down and tell him about glorious football games where the Eagles scored 10 points and the giant scored three and they beat the crap out of each other for four hours. And no one ever threw a ball over 20 yards and my kids like I would like to see a 40 to 35 game kind of situation I want to see you know, at points, the ball fly over the place. He doesn't think of football the way I think of it. And when I watched football now I think, Ah, just a catch with a bunch of rich guys are having a catch, like, like, when are they going to try to kill each other. And he doesn't care about that. And I just wonder if it's just sometimes you just get steeped in what you think is the way and then you see a new thing and you judge it as not as good as the thing you grew up with, I guess or something like that. Because I hear people say what you say but I never see it. Like, like I do you know what I mean? Like if we can do a time machine went back to 1979 and gave your mom like I'm like, you know, Hey, lady. I'm here from the future. This is a Dexcom and no way would I

Howie 14:49
ever go back to those days. Yeah, of course not. I mean, this it's way way better. This but let me give you an example. Two days ago, my pump dad had an issue and I couldn't and change the cartridge and basically the pump broke down. And ironically, I have another pump. So I'm able to reset and get that done. So then I sat there and thought about my kit, what would she do? What would I do if she was in Coachella in her pump row? What would I do if she is on a vacation? Is this kid going to know how to then go get to Ceiba mathematically figure or a sorry, whatever insulin law to mathematically figure out how much to prescribe, and then say, hmm, I haven't given a shot and 15 years or whatever the timeframe is, let me go get needles, and now how much so I just don't know. I think that's what I mean. So, but that said, I would never go back. That's a stone age as a diabetes compared to what we have today. So if

Scott Benner 15:44
it makes you feel better, my daughter couldn't give herself a shot. And so my daughter's had diabetes, since she was two years old. She's 17. And she's never given herself an injection. But and if she had, she was five when she did it, just tried it, or not even five, three, and was like, I'll give this a whirl. If I handed my daughter a needle right now. And I was like, hey, guess what, we're going back to needles. She'd be like, whoa, whoa, wait, hold on, slow down. Everybody just like, can't they FedEx a pump? You know, like, what's going on? But, but then she do it? The issue Wouldn't she wouldn't just lay down and die. Like she would do it. But so I think that's the answer. I think that, yeah, your daughter wouldn't know how to do that, you know, 15 years from now, if she's never used it before, but she'd figure it out, or you'd help her or someone would you know what I mean? I mean, 100%? Yeah, I get your point. I just don't think it's worth worrying about, I guess.

Howie 16:39
No, I hear you. But that's back to my theme that a kid can never opt out, of course, a guy but of course, they'd figure it out, because you have no other choice. So that's what I mean. It's like, Hey, you got COVID in your line. And it's like, you still gotta take insulin. But so there's not, there's not there's not an off day. So yeah, of course, they're gonna figure it out. Because the other option is not an option.

Scott Benner 16:56
Well, I want to dig into that because I have a feeling like I know where your will go deeper on that idea. But when you say you can't opt out, when you're the parent of a kid who has type one, versus when you're an adult, do you mean that you can just as a person living with diabetes, make a decision, like, I'm not really gonna pay attention to this today? And my blood sugar is gonna get high or whatever I'm just doing? Is that what you're saying?

Howie 17:18
No, no, not at all. No, I'm saying the kid always. They're a person with diabetes always has to be cognizant of that. That's what I mean. So whether you're sick, whether you're traveling, whether so my preparation for a trip is different than my wife's preparation for a trip, I gotta bring a, you know, a vat of stuff. So that's what I mean is there's never an off day for the diabetic I took whether you want it to pay pay attention or not. Okay.

Scott Benner 17:42
Yeah, I'm sorry. I was I was hearing you backwards. Okay. No, no worries. Yeah. So. But as a parent, you feel like, well, there's another person who could just take over for me for a couple of hours, like a spouse or a loved one, or somebody could step in and maybe give you a hand for a minute. And, like, spell you a little bit let you sit on the

Howie 18:00
bench? Oh, for sure. Yeah, yeah. And don't get me wrong. I mean, my, our journey is relatively good compared to probably other folks that I hear about. And we have a lot of support from family and a lot of support from friends. So there's a lot of people that are vested in my daughter's care. You mean, the school has been fantastic. So yeah, I'm not managing this nearly as much as actually my wife is she my wife is on the follow up, like 29 hours a day. So I'm like, I'm not even gonna have her Hi, alerts on leaving care. Let you worry about those. So no, my wife way manages it more than I do.

Scott Benner 18:34
So that's interesting, then. Do you have trouble? Well, let me see how to answer this question. You've diabetes a long time. How long ago was your daughter diagnosed?

Howie 18:45
August of 2020. So just over a year ago,

Scott Benner 18:49
how old was she then? She was eight. Okay. First question, did you have you been worried about her since she was two getting diabetes or?

Howie 18:58
No, ironically, what's the craziest not only have I not been worried? What's also interesting is I didn't even recognize the symptoms when she was when when she was diagnosed. And that's what's crazy.

Scott Benner 19:16
What were the symptoms?

Howie 19:19
So we want a trip to San Diego and typical vacation. I mean, beach vacation. Kid was not perpetually thirsty. She was not constantly going to the bathroom minimum, not at no weight loss. So the traditional sign that lethargic, I mean, we had a beach vacation, we're up late. Kids are jumping on the bed. She did wet the bed in San Diego. I mean, she's an eight year old. It wasn't obvious, but it's like, hey, maybe there's that would have been the first indication but still not enough that I'd be concerned based on all the other externalities. We drove back from San Diego. I live in Arizona, which is a six ish hour drive. And she only had two bathroom breaks despite what we've done. The volume of you know what, we weren't even drinking that much. So you got to think you have water to on the trip back from San Diego, not going to the bathroom a ton. The next morning, a couple more bathroom trips were like maybe she has a urinary tract infection. We took her to the doctor. And the doctor, were actually fortunate because you hear of a lot of pediatricians that are not that in tune with the symptoms. So she tested negative for the urinary tract infection. They drew her blood or they gave her finger prick, and she was 519. And then when my wife told me that her blood sugar was 590, and obviously we knew that instantly, and they've sent us over to the hospital out here.

Scott Benner 20:39
Wow. Okay, so do you have any other kids?

Howie 20:43
I do have a six year old.

Scott Benner 20:45
Okay. Have you done trial on that?

Howie 20:48
No, we did I know that. I've I have heard that you're a big fan of the sponsor.

Scott Benner 20:54
You well, in fairness to me, I've had them on a number of times over the years and just thought they were great to support and then very recently they asked if they could buy ads, but I would have said trial net whether they were paying all right, also they only bought a short run so it's over all right. So this part is getting cut out right? No, I'll leave it in. I've already spent money. I sent it to my kids college or whatever. So but no, I just think it's not that I think you should or you shouldn't I'm just interested in how people think about it. Like would you want to know if your other child had auto antibody markers

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Howie 25:39
So let me emphasize again, this is just my approach and my perspective and understand both sides of it. I personally don't. And because, and I've heard a lot of different debates. Why? I mean, what is it going to do? What is it going to give me what is it information? There's nothing that I can change. So why sit there in the back of my mind? Is it August 11? Is it a couple kids have been sick and hospital runs are highs? And now? So I don't know if I want to add? Because I don't know if there's behavior yet that has shown enough data that it's that I could course correct. So it's information. I don't want to Yeah, no,

Scott Benner 26:15
I completely. I don't judge people on that thought. I think it's people fall into two camps. And I understand them, I would tell you that trial net would tell you that your child's possibility of going to decay, if they were diagnosed goes down significantly if they're in the trial, and they have a prevention study going on that could hold off the onset of diabetes by a number of years. And I think and, you know, plus data for, you know, Tomislav, which is a drug they're working on. And I don't know if you've ever heard that the gentleman who runs that, that company who's making that drug, but it's a really fascinating interview about how he hopes to change diabetes in the world. It's just I can't go into it right now. But I'm not saying you should. I was just interested in your thoughts. So thank you. I appreciate it.

Howie 27:04
You guys didn't use that for your daughter. Right?

Scott Benner 27:07
My son went to trial that Okay, okay. Your son was second. He did not have. He didn't have the antibodies at that time. And they don't retest if you don't have any. So if he's developed them since then, we don't know. But God, you're gonna bummed me out. Make me wonder if my kid's gonna get my other kids. She's our way to move me. No, I'm just teasing. You were the catalyst. You brought it up. I really did. I apologize. I'm trying to push this trial not on me. No, I'm kidding. I'm trying to make it your your problem that I got sad first. Okay, so when you're when your daughter's diagnosed, you look at the world now. But what is the world now to you? So you're using a pump? Were you using a CGM before she was diagnosed? I was okay. All right. So you've got CGM, you got a pump. You you you know the world now around diabetes. If you're not comfortable with the numbers, you don't have to give them to me. But are you happy with your care prior to her being diagnosed?

Howie 28:12
Yes, so my my I was a three, every three months, endocrinology appointments, written to doctors once a year when, you know, I was had enough diabetes. I probably wasn't the best kid diabetic. What I mean by that is, oh, shoot, I gotten to see the doctor. Let me go write a bunch of blood sugar's down in my logs. So I'm not yelled at my agencies when I was a kid were not amazing. I mean, I was probably printed nines, I probably printed 10s. And I shouldn't say that's not amazing. It's just a data point. So I printed scores that were probably most parents would not be that excited about. Since I've been on a pump in 2005. I've never printed above a seven, my agencies are six to six, five or so. I'm probably stricter, I probably micromanage my diabetes to the point where I'm lowish higher percentage of times on my pump, and most people are, which causes me to snap back on the high side, which impacts my agency.

Scott Benner 29:10
Tell me it's my last. I'm sorry, before you go on. Tell me what low means to you.

Howie 29:16
Usually below 70

Scott Benner 29:18
Okay, all right. So you go below 70. And then you correct are you using an algorithm?

Howie 29:24
I correct with with 15 grams of carbs generally. Okay. And a little bit more potentially on how low I am. Okay.

Scott Benner 29:32
And then you bounce later that does that never make you think I'll try eight grams of carbs.

Howie 29:38
Great question. I've never really thought in him back to my point where I could do better if I made even overcorrect. Because when you're the diabetic kid, you were like, you can't get high enough quick enough. When you're the diabetic parent. You set you set a timer and wait 15 minutes. So it's always a do as I say versus do as I do because I'm 40 There's no way to explain what that feels like to somebody. And I thought about it this whole car right over this conversation in case that came up. But so I overcorrect. But I have I thought about the eight grams of carbs to answer. The question is no, it's a great, great idea that I wouldn't be opposed to trying at all.

Scott Benner 30:16
I want to ask you a question, the feeling that you're trying to get rid of, is it visceral, and it needs to go away? So you just like, do you think the more I eat, the faster this will go away? Because does that really correlate like would aid not work as well as 15? Or

Howie 30:30
100%? It makes no sense. You're absolutely right. I mean, and you're not going to go up right away. I mean, we overtreated my daughter yesterday. So it's, there's no logic behind it. Okay. But the feeling is not it's uncomfortable. I don't think it's like I need this to go away. So I've actually almost trying to come to the point where I can trick myself into appreciating it maybe like, huh, so there's people that drink a lot of beer to get tuned up, maybe I can almost trick myself into thinking I had a couple of drinks, which is not really the right way to approach it. But it's uncomfortable, you're feeling you're coming out of your skin. Like if you ran a turkey trot on the east coast, where it's freezing, and your body's warm after the turn, but then you instantly stop and you get hit by that cold air. Right? That's the way it feels. It's like, wow, I'm really uncomfortable right now. And that's the best way I can

Scott Benner 31:21
describe it. It's just a complete quick change to how your entire system feels and direct you just want it to go away. Correct. Okay, do you think being low stops you from thinking straight about it?

Howie 31:35
I have 42 years of experience. So probably not as much as somebody that's new around and back to a do as I say not as I do. Like, I've probably driven a lower blood sugar than I should and I would never want my daughter or anybody that's listening to do something like that. So I I'm uh, I'm of the camp of I'm so which is actually hypoglycemic unawareness is a real thing. But I still feel low in the ad. So hopefully I can manage it quicker than, than some others. But the initial question that started us down this road is I do I am a very diligent care of my, my care. I mean, I I print low sixes which could be better, of course, I go to see a retina doctor on his scale of zero to 10. They raised me a one for zero being the best, in terms of my mind just went blank. What are those called? A Blasian? are what are they called? The shadows of the eye. So I'm ready to really well, no neuropathy on toes or anything like that. So cool. For somebody that was casual in the beginning, became much more diligent later in life. Had a had a lot of had a good college experience had a great adult experience. It hasn't impacted me to the point where I've seen some of the long term effects that have impacted others.

Scott Benner 32:49
Yeah, I said earlier, you're interesting because you're a dinosaur, but you're young.

Howie 32:53
Yeah, I appreciate that.

Scott Benner 32:54
You usually when I hear people's stories like this, they're usually a little older than you. Just because you were diagnosed so young at the right time to hit all these different changes in insulins and technology. You've kind of lived through a lot of the of the lifetimes that diabetes actually, yeah, when I

Howie 33:12
heard that Johnson only gave out like 50 or metals, and there wasn't a lot of it was like, oh, shoot, send them far away.

Scott Benner 33:19
You might be maybe getting an ad or metal and let's hope so. Yeah, no kidding. Okay, so initial thoughts when your daughter is diagnosed? Shocking. Scary.

Howie 33:33
Oh, I was happy. We lit fireworks was awesome. We had a party you should have seen it was great.

Scott Benner 33:38
Yeah, absolutely. What took so long ganging up on her mom. Now,

Howie 33:42
that might have that might that might have been your best question so far. So I will say that's a good question. Except for that one. No, we were. We were dejected, obviously, but we we were way forward to that loser. Are you still on? Did

Scott Benner 33:55
you hang up on me? No, I'm trying to figure out if your response is the same as people who don't have diabetes, just kids are diagnosed.

Howie 34:02
So I didn't go. I don't think so actually, where the anger didn't get the why maybe we didn't have as much of a range of emotions because you have to spring into action. What I think I could have done better is opening up myself to be educated as well, because there's so many things that you take for granted, having that experience that you could benefit from like I didn't really even know what a honeymoon effect was. I didn't know certain things that were important that I didn't I usually undercut the education that the hospital provides, right. My wife had to go through basic card counting when I just want to get out of the hospital and get her home when that type of stuff is very important. So you had to step back a little bit and appreciate the education and pause to understand that not everyone is up to speed of where I was. So I didn't go through probably the ranges of anger and frustration. Really, I mean, sad. But also, I did feel empowered that that I had the tools to help her

Unknown Speaker 35:08
that in that initial

Scott Benner 35:11
education in the hospitals, Were you hearing things where you're like, I didn't know that, or are you just like, wow, this is I know all this. But it's, it's cool that they're saying it, which I haven't feel Yeah.

Howie 35:22
In the beginning, I normally it's like two or three days stay depending on circumstances. And I wanted to test out my Let me test out of this. I know this stuff, I know this stuff. Before I got, I saw what they were going through in the program and all that stuff, I probably had ego and type a went in. Once I sat down and saw what they were presenting, and the food choices and the food charts. The biggest, the biggest awareness to me was that the honeymoon phenomenon and how little insulin, I couldn't believe what a half unit was, and you mentioned that on one of your podcasts on your daughter, that you can't understand what that is. So I was initially in a rush to get out of there and just get this kid Hall. But I, it was invaluable what we got from just the details. And then what's interesting is she was diagnosed during COVID. And I was the one that spent the night just to watch over and make sure and babysit this thing as it goes on and work with the nurses in the hospital. Not that I was adding any value, but you know what I mean? I sat. So then when my wife had to come in, it's like you have to change places in the hospital and do all those things. So they spent a lot of time with her, which I which I also thought was pretty great.

Scott Benner 36:35
Okay, so now your wife reaches out into the world to find information. She's the one that found the podcast, right? Correct. So what would lead her to do that if you've got type one?

Howie 36:49
Issue, huge fan of different perspectives. And so she I mean, there's so and I also same thing is, I'm not that I don't think there's so much I need to know, and there's so much I still can know. And I think that the hospital education made us aware about fundamental diabetes that I was taken for granted. I mean, I was, you know, 43, or 42. And my, my daughter got it. And I took a lot of that stuff for granted. So I am a big from, whether it's JDRF, or whether it's other diabetic parents in the area, or whether it's, you know, information through podcasts, there was nothing like that back before. So I've always encouraged and she's even, you know, self motivated to find that out and learn as much as she would candidly tell you, and I don't like to paint somebody else's perspective. But she would candidly tell you that I because how he made diabetes look kind of easy, I didn't really have to worry about it. And this was like, Oh, my gosh, I can't believe the depth of what this involves. And all the other impacts. It's not just like, hey, don't eat sugar, or, you know, take a shot. There's so many varying circumstances that has opened her eyes. And because of that she's sought information proactively on her own. That's

Scott Benner 38:05
kind of what I wanted to get to. So are you if she's not involved in your care prior to your daughter

Howie 38:13
involved? I mean, you're you can't be uninvolved, but hey, my bloods logo, can you help me with orange juice? Or there's times that or she's recognized, hey, you're low. Do you need something? Do you need something? But it was definitely, much, much, much more casual. Yeah, but no, she was never involved in my palm, never, you know, none of that type of stuff. And we're just observation. Are you okay?

Scott Benner 38:38
Right. And because that's that part is always like, super fascinating to me, because of my perspective, like, the idea that you could live with somebody that has type one and only have like, a loose understanding of it is, it's just, it's so unlike my experience, that it's why I asked the question, usually, I'm just always looking for answers that, that makes sense to me. But I mean, I get it. I don't see why she would be. I just wanted to know if she was like, I'm wondering like, in my mind, like your daughter's diagnose, like, Does your wife step back and go, Oh, God, like, how are we so bad at this? I can't let this happen to my daughter, or were she like, I don't know anything about this? Like, was it a moment of realization for her where she's like, I really don't know as much about this as I even thought I did. The latter for sure. Okay. Yeah. Is has your health benefited from your daughter's diagnosis?

Howie 39:32
I don't know if I have data or stats to measure that. But I, so, um, I don't think I have enough information as to save so so my agencies haven't changed my, my tanam percentages and lines haven't changed. So I can't say it's gotten better or worse than said no. I because one author thing I want to emphasize is we really really, really like my parents in the old days would say hey, like a normal kid like a normal Kids, and they've really stepped back because they don't want to perpetuate that. So it's the same thing as we want to think of my daughter as a kid first, and you're a kid number. So the diabetes is almost like, Hey, you can eat what you want, as long as we track and measure. And she's never hiding food because of how we let her live. Like my other daughter. And so because of that, nothing's really changed. We don't cut our food, we don't do anything differently. We kind of still eat what we we eat when I've always managed that anyway. So I my care hasn't changed that much. Would

Scott Benner 40:32
if I don't know, um, again, the numbers are you can share them if you want, but I don't care. But your variability, your your agency, your outcomes, would you be comfortable? If your outcomes were your daughter's outcomes?

Howie 40:46
What do you want? Yes,

Scott Benner 40:48
you are. Okay, that's 100%. Okay. And so is it fair to say that she's close to you? Are you having luck managing her that way? Or is it harder with her?

Howie 40:59
Yes, I'll give you a couple of things. And also perspective is the physicians that I see are also celebrating my care for my, my timeframe and my lack of complications. So this isn't just that I've been, I've been really paying, spending a lot of time and managing it. And it takes work, but it's definitely you get a good return. So the physicians have supported that. And I would definitely be happy where my daughter is at. And one other thing to think about is the margin of improvement between a six and a seven. Supposedly, an agency comes with such significant risk of lows, I personally still would rather be a six. So I do try to I tend to try to run low. My daughter hasn't printed above a seven since she's been on the pump. So she still has, you know, obviously, there could be some, some measures of improvement. But she's been seven, since she's been on the pump. And she's only been on a pump for eight months. So I think she went on fully in March of this year, because and which is accelerated, by the way, they let us on a Dexcom quicker. And they let us on a pump quicker. Probably because of my experience. Yeah,

Unknown Speaker 42:06
I would imagine. Do you guys Pre-Bolus meals consistently.

Howie 42:09
So back to the ability to always learn something? I do. Yes. We do her as well. It's actually come back to bite us because she's not eating as much as we put in sometimes. Yeah. So then I have to over treat and say, Hey, you're not eating lunch? But hey, enjoy the Skittles. But I do Pre-Bolus Yes. Okay, and that I've seen an improvement there. Because just like that modest improvement of it tends to tick up. So I do take about a Bolus 15 minutes early.

Unknown Speaker 42:40
Cool. That's excellent.

Scott Benner 42:42
So I have other questions. So the first thing I was gonna say just just to kind of lean into what you just said a second ago, if she's not eating well, you could do an extended Bolus, and then bail on it. If she doesn't eat that interest. That's one way to do it. Like so brilliant. So you could do an extended Bolus, but over only over 30 minutes. So you still Pre-Bolus say her meals, five units, which is probably heavy for her, but I don't know. Say it's five units, you do five units put in, I don't know 50% Now and the other 50% over 30 minutes. So by the time your Pre-Bolus is over, she's got some of it. You know, I mean, you could work with the numbers and the time and stuff like that. But you could get it to a point where she's got some of it enough that the Pre-Bolus is going to work and she won't spike, but that you could bail on the Bolus if she doesn't finish the food. Oh, that's brilliant. That's one way to do it. You could also I mean, you could Bolus some and double her basil and attempt basil to kind of make up the rest and then bail on that if you wanted to. Like there's all kinds of ways to like kind of futz with the the insulin to try to make it to put it where you want it without it making her low later. But what I'm what I'm super interested in is that if your wife's so your wife listens to the podcast, you just listen to some to prep yourself for coming on the show. So it was your wife's idea for you to come on the podcast.

Howie 44:07
Do you want to keep shining a light on that? Yeah, yes. Yeah. No, it's fine. I actually wanted to Yeah, so my I thought of the patient did parent I was like, it's a pretty good story. She motivated, she's like, Look, you

Scott Benner 44:20
got to listen to this. You got to talk to this. There's a great story. So my wife is the motivator to come on here. Yes. And so she wants the story. But do you think there's any part of her that wants you to hear what I think about management? Of course, okay. All right. Okay, because if she's listening to the podcast, and you're saying six, almost seven is fine. I'm going to tell you like my daughter is 17 her a onesies been between five two and six two for eight years. She eats whatever she wants, just like you we don't mess with food. Except I probably just have a different idea of of where her blood sugar should sit stable than you Do that's pretty much it. But I'm guessing as far as the number goes not to say one's right or one's wrong, so when you listened to get ready, you kind of listen to protests and stuff like that. Like, what did you think when you were listening? Do you think you think I was an idiot? Or did you like, like what you heard somewhere in between?

Howie 45:19
I definitely didn't think you're an idiot. I was I was very appreciative of, of the variability of what your topics are. So there's no way that a non diabetic versus diabetic wouldn't find value or information based on the variety of topics. I also thought the information that you're giving is usable. So even if you get if you think in one hour, if I got three pieces of information that's invaluable. And the return on that is great, just what you gave me right now about bolusing and the extended Bolus. So I'm a huge fan of learning and trying to understand information. So I liked one the variability to some of the specific tips with I thought the the fat that with it was bolusing. For it was the pro tip number 430.

Scott Benner 46:07
Yeah, Bolus for fat and protein.

Howie 46:09
Right. So I think that's huge too, which is an extended Bolus feature. Some pumps have more variability or flexibility in that, but the ones that are going to resonate with me are the specific specificity on how can I get better from a six five to a six? Oh, I think that would be that's valuable.

Scott Benner 46:25
Yeah, I'll tell you, there's another fat episode that if you enjoyed that, you'll like I'm looking at the number for you right now. On my, it's weird to do some, it's the 471. It's called bolusing. Insulin for fat. Okay, if you like that pro tip, you should listen to that. Because that'll give

Howie 46:45
it's with you. It's with you and your educator on that one, right? Oh, no, on

Scott Benner 46:49
this one, it's going to be me and a mom from Canada. Okay, writes a blog called waltzing the dragon. And she's, she'll go through exactly how you can count the fat grams and make a Bolus to counteract the fat rise. It's fascinating. And it works really well for most people.

Howie 47:09
Yeah, that's the stuff that I have a hard time with. Certain, you know, Asian foods, that with the sauces, I usually kick up in those chicken. I always miss counts, things like that. So anything that's gonna give me tips and improvement on mitigating highs from foods that I tend to eat all the time? Yeah, would be very helpful. I'm

Scott Benner 47:27
gonna guess. And if I'm wrong, you'll stop me. But I'm putting myself out on the branch here. Your high alarm on your Dexcom set at like 200.

Howie 47:37
Let me even look, I think it's 181 80 was

Scott Benner 47:41
my first guess I should have went with my gut dammit.

Howie 47:46
Yeah, it's 180. Okay,

Scott Benner 47:47
if you set that at 150, you're able and SEO go down.

Howie 47:54
But here's the thing. Am I supposed to then jump in? I don't know what which pump your daughter's on? assuming she's on a pump. Right? I hear mixed reviews? Where? If I'm going to keep jumping in to overcome the control IQ? Will that will that change me to the low? That might you're saying that control IQ will kick in earlier?

Scott Benner 48:12
No, I'm saying you're You paying attention is a big deal. So I know you're using control IQ, and it's what is its target, like 112 and a half or something like that. But if so, if you're setting Well, listen, we'll talk through it for a second. So when you are completely away from food or meal insulin, like overnight, where does your blood sugar sit stable?

Howie 48:39
So this is my daughter, my son, my wife brought this one up to me. It's like, it's perfect. It's like incredible. My wife said that you were talking about this not too long ago. It's at 100 ish. I mean, it's hard to see right now because I'm looking at the pump instead of the app, right? Because I'm on my phone, but it's close to 100 or low 100.

Scott Benner 48:55
Okay, are you in sleep mode? When you're doing that?

Howie 49:00
I don't change anything. My Bolus, my program is changes in the middle of the night. But I don't actually go on to sleep mode automatically now.

Scott Benner 49:07
Okay, so I hear from people that sleep mode can be a little more aggressive. And so if overnight, just think about this for a second, if overnight, your blood sugar sat at 85 or 90, instead of 100, your agency would probably drop like point seven.

Howie 49:24
Like just All right, that's easy. So that's interesting. So you're starting sleep mode or your suggestion is to start sleep mode potentially right before obviously you go to sleep and mine is going to be tighter in the middle of night. Yeah,

Scott Benner 49:33
so my daughter loops, so she has the do it yourself algorithm right now. But we're going to try on the pod five when it comes out too. But the but the control like cue from what I understand from people, so I don't have it. But from what I understand for people sleep mode can be a little more aggressive. And so there's a way that people use it. Some people stay in it 24 hours a day to kind of Like, keep the algorithm, I don't know, tight again, I've never again, I've never done it. But, but so like, overnight last night while you were sleeping at 100, which by the way is magical like, and especially to somebody I should say who's had diabetes for as long as you have who's lived through so many different iterations of diabetes, it must just be amazing to you that there's an algorithm like cutting your basil back and keeping you from getting low, like it must be magical and but the one my daughter's using right now was a little more user defined. So last night while you were sitting super stable 100. Overnight, Arden was sitting super stable at five overnight. And then the next thing I do that you probably don't do is I have tighter tolerances on her CGM, so that I'm so that we're aware of her blood sugar. So the way I think about her blood sugar is, I think, my lowest set at 65. I'd prefer for her not to get under 70. But she doesn't really, honestly, that doesn't happen more than a couple of times a month. And so, but her high alarm on my phone is set at 120. And on her phone, it's set at 130. And my theory behind that is, the sooner you know that you're going up, the sooner you can make a correction. And when you make that correction at a lower number, you use less insulin, when you use less insulin, you have a lower chance of having a low blood sugar later. So instead of waiting till you're 180, and going, Ah what happened here and having to put on a bunch of insulin, which might cause a low later, which might cause you to eat 15 carbs that might cause you to go back up high. Again, why not find out at 120 that things are a little askew, and just nudge it back again. And then it's this one little thing you do? It's over. And then you skip the hour and a half where your blood sugar is going to 180 that you don't know it because you're not getting an alarm, and then all the rigmarole that comes afterwards. So that's how I think of it.

Howie 51:59
You're under reset, right? The issue is, is what's funny, is I actually, when we started I talked about micromanaging diabetes, is because I tend to try to run them before they hit up that high when I was always like, but then I was educated that you should try to let control IQ run its course. But I would rather try to tighten it up myself and front run it, which is exactly what you're saying. Yeah,

Scott Benner 52:22
screw that noise. I mean, I love algorithms. I think they're all terrific. But they need help. Yeah, like it's you know, you take control like you as an example. You go out right now find a feral type one walking around, who's you know, a one sees nine and a half. And you know, they don't know about pumping and CGM. You slap a CGM on them put a control IQ on them turn that thing on, their life gets immeasurably better. And if their blood sugar has to go up to 180, so that the algorithm can work and bring it back down. It's still it's such a an amazing improvement for their life. But if you're a person who's talking about like, I want my a one C to be in the fives, well, then you got to figure out how to work with that algorithm. Like your daughter is going to want to have a baby one day maybe, and her OB is going to tell her that hurry. One scene needs to be five to do that. And yeah, that makes sense. Yeah. And I guess my point is, is that if my 17 year old daughter can have a five, five, I think that was our last one. And I can tell you that in the last four days that she's had a ammos bowl for lunch, if which in your local so you probably know what that is. It's basically Mexican fast food, you know, with a ton of like, rice and sour cream and all these things that are a problem. Last night, she had a salad for dinner, but I think it's because she exercised. So she was like, I'm gonna have a salad. But you know, she's also had pizza gone out for burgers with her friends, like she eats as, as you know, quote unquote, normal as you can possibly imagine. And the only thing that I do differently than other people is we react sooner. And we take advantage of overnight hours. And that's your five a one say like you listen to those protests again. And just adjust your thinking a little bit like I know you think like, it'll there'll be more lows, but I see fewer lows than when my daughter was bouncing around before because the bouncing around to me is where the problem really happened. So sometimes people don't Pre-Bolus Or they don't understand the impact of the food they're eating. So they use too little insulin. They end up spiking up. Eventually they get tired of it. They correct that spike in the middle of the spike working their food digests out of their system. There's nothing left to hold up the blood sugar, they come plummeting down, they panic, they overtrain they go back up again. And then they know some people chase forever. Like no kidding. Like you can see I've had people send me graphs that just go on for days where they just go up and down and up. They just they're out of sync with what's happening. They don't recognize that insulin Use now isn't for now it's for later that kind of an idea. And, and they just chase forever. But once you find stability, and you can dial in your Basal, and that insulin sensitivity and create that stability to lower and lower number it you don't have once your settings are right, how you don't have any more of a chance of being low if you're 85 All the time than you do if you're 120 all the time. But I do think you'll be low more frequently if your blood sugar's frequently go over 160 at a meal.

Howie 55:32
So I'm just going to change my high settings on the on the control IQ to 150. That's what you're saying, That's it, you're out now at least see what that looks like for the next month or two.

Scott Benner 55:41
There's just yeah, there's a really interesting study, there's someone from decks, there's a scientist from Dexcom, somewhere in these 600 episodes, that the tighter your tolerances are on your Dexcom, just meaning that the more you pay attention to your blood sugar, the lower your a one C code drops, and the better your variability gets. And it's just because acting sooner creates a an environment, like I said earlier, where you use less insulin. And when you're, you know, if you don't get high, you know, you won't get high, and then you don't get low, and then you don't chase. And it's just a really simple idea. Really, it's for sure, yeah, the way I think of it, and it's in one of those episodes, somewheres. You know, when you're driving down the road, and you find yourself veering a little bit, you're just kind of drifting to the right, you don't turn the wheel 180 degrees to the left, you just nudge it back a little. You don't I mean, if you were to oversteer, you'd end up in the other lane. And then you'd be like, Oh, God, I'm gonna hit a car, and then you'd be oversteering the other way. And then that's up and down, up and down, up and down, except, you know, side to side, because you're driving. But if you just make these little bumps and nudges to the wheel, if you really think about how you drive a car, most of your hand movements are almost imperceivable, to your eye even, that's what you should be doing with diabetes, is just making the small adjustments along the way. And I think as the algorithms get better, and hopefully all of them like every one of them control, like you whatever Medtronic Scott coming out on the pod five, when it happens, I all these companies like I call on them personally, to go back to the drawing board, create a lower target, and go back to the FDA and get it through the FDA. Because while these things are amazing, and they're going to help a great number of people, they're not going to be as valuable to a person like me. Because if I slap an algorithm on my daughter, I mean, are you telling me I gotta hurry once he needs to go up a full point so that I can have an algorithm, you know what I mean? Like they need to, I think it's imperative for them to spend some money and some man hours and some time all of them to get the the goal target down lower, so that the FDA says, You know what, let's let the user say, I'd rather I'm shooting for 85, or I'm shooting for 90 or I'm shooting for 95, like let the user make that decision. And then the algorithm should support it.

Howie 58:03
So your will be correcting at 150 Just for the sake of the argument to make it easy to you. And then it's going to 180 and it's still continuing up, you're not adding correction then because you don't want to stack Do you let that unit or ish work to bring down or would you correct again,

Scott Benner 58:18
I believe you're looking for an episode about stalking, where I'll tell you it's not stalking if you need it. So if you would have made a great Bolus, you never make it to 150. And so if you made it to 150, your Bolus wasn't right. Like there's a, you know, when you see people's like super flatlines. Online, you're like Jesus like that. Like you, somebody puts a graph up in there, like there's pizza in here. And you're like where they can't even see it. Like that's somebody who really knows how to Bolus for pizza or Chinese or just a regular meal. So my, my assertion is, I'm not shooting for a solid flatline. Like there are people who do that. I'm not one of those people. I think that I've worn a CGM, and I don't have diabetes, and I've seen my blood sugar go up 121 3140 for a meal, I've seen it hang a little bit and come back down again. So in my mind, 140 and it comes back on its own doesn't get low. Sorry with me. I know I could have done better, but it's okay. 160 to me is a high blood sugar. And in my mind, 180 is a spike like I've significantly screwed up if we're 180 or above is how I think about it. So my overall concept around it, and I don't abide high blood sugar. So if a high blood sugar goes up, I bring it back down. I'd rather stop a low or falling blood sugar than fight with a high one. I will tell you that that sentence is at the backbone of how I think about diabetes. I'd rather stop a lower falling blood sugar than then then fight with a high and I think that as you get better and better at bolusing for meals, the frequency of the highs goes away which takes away the frequency of the lows as well. It's all it's all timing and amount. You just have to have the right amount at the right time. So even though your algorithm if I'm remembering control IQ, right, they all work about the same way, you make this big Bolus, and then it leans on the Bolus and takes away the basil. Is that right? Yeah. And so if you mess up, if you don't Bolus enough, if your meal ratio is not heavy enough, then as soon as that basil goes away, you know, the carbs are like cracking their knuckles and like licking their chops to like, I'm gonna win this, and you know, it starts to go up. But if you had a, if your meal ratio was right, and you Pre-Bolus well enough, then that amount that you put in should cover the basil needs and the meal needs. And then the algorithm should be able to say, Okay, now is the time to put the basil back on. So if you're seeing spikes, I would look at your meal ratio. Does that make sense? Like you're you're in for sure. Yeah. And I would be as aggressive with the Basal is like, could be, I don't want lows, but I want to sit as low and stable as possible. Without the, without the algorithm cutting out all the time. You know what I mean? Like you want the algorithm you want the base, it'll be able to run. And for the algorithm to come in when it needs to, and add a little or take a little like, you don't want your basil to be so heavy that the algorithm is always taking it away. So there's a somewhere between insulin sensitivity basil, and meal ratio, there's a balance in there, where you'll find kind of perfection. And then after that, it's it's understanding the differences between foods, it's understanding that you, you know, I don't care if you, you know, pour a bowl of Frosted Flakes, and the box tells you it's 35 carbs you need, it needs what it needs. So there are some foods where you have to ignore the carb count and Bolus, you know, for the impact of the food that you know is going to come and there are some there are some foods that you can rely on your carb count, and it works really well.

Howie 1:01:52
Yeah, chicken foot back to that example. It doesn't matter. I mean, I get like 140 grams is still gonna be

Scott Benner 1:01:57
Yeah, did you guys, I don't, I couldn't even begin to tell you when my daughter was growing up, like, you know, Chinese food, like, I don't know how to count carbs in Chinese food. I'm not measuring it. There's no accurate carbs. Now, what I learned was, my daughter's Chinese meal needed a Temp Basal increase of about about 180%. For three hours, she needed about a 20 minute Pre-Bolus. And it and I had to be and there was a number in my mind, like, I didn't matter. I just knew it was like 15 units. You know what I mean? Like, I never even bothered with it. I just learned from historical like, I go on the idea that people pretty much eat the same every time. You don't I mean, like, you're not like 100% Yeah, it's not like how he's like a one slice guy, one Friday night, and the next Friday night, he's like, I'm gonna have seven slices of pizza, you're like you're a two, or you're a three, or you're a one like, you know, you mean, so you kind of learn the impact of that food. The simple way I think about it is if you Bolus for a meal, and you spike and stay, and then it takes, I don't know two more units to bring it down without making you low, the next time you have that meal, I don't care what the carb count says those two units from the correction belong in the initial Bolus. Because that's what that meal takes for you, aside of what you're setting, say, you know, your settings might work great, and all these other circumstances, but this one meal, they don't. So stop fighting with it. And just it's common sense, put the two in with a meal, and don't have the spike.

Howie 1:03:31
In back your point about the algorithm. It's like, I don't know if this is still the case. But Medtronic, you could change your active insulin or insulin on board. Were Tanna, when you're in control IQ. It's five hours regardless. Yeah, that's even an impact. Yeah, they're

Scott Benner 1:03:43
all different. I mean, look, right now, I haven't used on the pod five yet I am i They're a sponsor. It's not why I'm saying it, I'm saying I really want to use it because loop, you have to use this little connecting device with loop called a like a Riley link or an orange link. And my daughter does not like to carry it, it's an extra part on the pod is going to print the algorithm right on the pod. So you'll literally be able to walk away from the controller, and it'll and the algorithm is going to work fine with loop if you get away from your phone, because the algorithms on the phone, if you get too far away from your phone, or that link breaks, then the algorithm stops working. So I want on the pod five to work for my daughter very badly. And we're going to try it. But it's going to lack some of the user defined ability that the do it yourself system has. And you know, right now my daughter's target for her algorithm is I think it's 85. And so the algorithm is trying to get her to 85. And I mean doesn't always work. It does a good job, but it also works like other algorithms like she's she's been getting this kind of like, I don't know what it is like excitement thing when she goes to school in the morning. And the algorithm kicks in and tries and tries and tries and holds her about at 141 45 which is great. Like you know what I mean? And then She'll when she leaves school and that that kind of like excitement goes away, it comes back down again. But we've been experimenting with different boluses trying to Bolus we're trying to Pre-Bolus the excitement she gets when she goes to school or anxiety. I don't know what it is exactly. But you know, her blood sugar rises in the morning. And so we've been working on different ways to kind of fool the algorithm because she's not taking in carbs. So if you just Bolus for carbs, then it's going to, you know, we're if you just make like a straight Bolus, I should say without putting in carbs, it's going to take the basil away, because it's going to suddenly think she has too much insulin. This morning, we tried to Bolus for a few carbs to see if that would work. It didn't. Tomorrow, I'll try to be more aggressive with it. And try to get ahead of it. But like, in my heart, I'm looking at my daughter's blood sugar right now. It's 142. And it's not upsetting to me. But I'm not just gonna look at it. You know what I mean? Like, we're, we're gonna we're gonna move that number. And so while you and I were talking, I texted her and I said, you know, and and to make a Bolus, and she did. So she. So what we did here to try to like get around the algorithm is we Bolus three times her Basal rate. So her Basal is about one. So she just put it in blindly three units, because I figured she needs about a unit and a half to move the blood sugar. And she needs about a unit and a half to cover when the algorithm shuts off the Basal because we've just put in a blind three units. Does that make sense?

Howie 1:06:30
Yeah, for sure. Yeah. So it sounds like you're mad, it's back to your My question. Your question to me about my wife and me, the care and the attention it's putting here, it sounds like most of the management's relying on you.

Scott Benner 1:06:43
Well, in certain situations, like you're gonna have a hard time talking a 17 year old and thinking they have to Bolus a 140 blood sugar while they're at school. You don't I mean, like, it's, and I don't see it as it's funny. I don't see it as micromanaging. I see it as managing, like I, you know, if if people want to say that, you know, oh, my kids blood sugar goes up to 225 at school, and I don't micromanage them. I mean, all right. But that's like a seven and a half a one C at once he like, that's not micromanaging. That's, that's management. Like that's what diabetes requires. And so what is happening over the years is that while I make these decisions, she's always involved in them. And it's my hope and desire that she's just kind of learning as she goes. And then the next piece is going to be to get her to want to do it consistently. And that I don't think is something you teach somebody like I think that's maturity. So my idea is that she has the tools. She seen them used, she knows when to use them. And now that next piece is, is the hope that she'll want to, because I can't make her. You know what I mean? So if you're saying my art, like, would Arden Bolus for a high blood sugar if I wasn't around? She would. But would she think about it the way I think about it, I think to your point no, because to your point earlier, right, like I I'm her parent, I probably care more about her than she cares about herself. Just like your mom, you know what I mean? For you and you now for your daughter? For sure. Yeah. So I don't know, man, I see it as a slow burn. Like it's, it's gonna, I think the worst that could happen on an algorithm is that if my daughter, like completely flaked in college, maybe her a one C would go to like six and a half. You know, I wouldn't see anything terrible about that. I know, she wouldn't sit around and stare at a really high blood sugar. Like she doesn't want to feel bad. You know. So once she's up at 180, she's not going to feel good. Just like you still feel a little hinky at 80 Because but if you drew yourself down a little a little that would go away eventually, I think. Yeah, I would imagine. Are you having fun?

Howie 1:09:04
Yeah. 100% I was actually going to also ask you the fact is the wife and she also get involved. So that was another question that you asked me,

Scott Benner 1:09:13
oh, my wife is less involved than I am. But her job is more intensive than mine is. So during the day, my wife's like gone in like very confusing, long legal documents and on phone calls, running meetings with a lot of people my job allows me to kind of like look up more. And plus, I was the one who started it out. Like I was a stay at home dad when my daughter was diagnosed. So most of the informations in my head. So I still see my wife like asking questions and then learning along the way. But the truth is, she's a bright girl. Like if I just disappeared like if Thanos snapped and I was gone. It would take my wife about a day and a half to figure this out. And to put everything into practice, plus I left behind a roadmap for so she could just, that would be the ultimate indignity. If she had to listen to the podcast. She would be I

Howie 1:10:09
mean, you're selling yourself short yet to drum up an hour and 12 minute conversation with a complete stranger. No preparation is pretty good. That's not that easy.

Scott Benner 1:10:16
Dude, I'm great at this. But don't tell people. It's seen seems in my list. You don't? Yeah, you don't want to show off? Oh, no, no, nothing like that. I don't want to I Yeah, no, I mean, listen to the way I see these things. As you come on, you are who you are. And then the conversation pulls out the story. And that way, it's a nice, it's a real conversation, like you and I are just getting to know each other. And, and that that's what makes it listener. But like, if you were to come on and start reading a bulleted list, people would be like, No, thanks. I'm good. You know what I mean? Not that you would do that. But to me, it's, it's not smart to have it so planned out that it feels stilted, is usually our authenticity. Yeah, just, you know, just do just do it. Don't be sorry. So is your wife going to be happy with us? Have you done what you were sent here to do?

Howie 1:11:11
I mean, you tell me how many It depends. I mean, how many more sponsors can we sell? Do you think we can do a good job? Let's take this thing to the streets.

Scott Benner 1:11:18
I like Absolutely. I like how I got an email from her the other day like she was your mom. She was like, it was almost like my house is coming on your show. And I want to make sure

Howie 1:11:29
that I mean, I

Scott Benner 1:11:31
figured you picked her and you were like, I want to be ready for this. Like, what do I do? Is that how it went?

Howie 1:11:36
Preparation is the godmother of execution. So yeah, like to the you saw the beginning, like, let me produce the show. You're for the guests. I got the questions. Don't worry about it. Yeah,

Scott Benner 1:11:46
I know. I look like I don't prepare. But I've been preparing to do this for 20 years. So you know, I'm good. The Congress, you

Howie 1:11:54
don't get to 590 shows by not being prepared. So by mistake, at least that's what you're up to. Now, I don't know what you're up to. Before pre production.

Scott Benner 1:12:00
Yeah. Oh, I have the I mean, if it gives you any feelings like you won't come out for six months, at least. Really? Yeah, I have probably 6065 pre recorded shows that haven't been up yet. I record Wow. I recorded like at least three days a week.

Howie 1:12:19
And then I would imagine there's some people that don't make the cut.

Scott Benner 1:12:21
No, never happens. It's so funny. This comes up all the time. I have I think my number I don't know the number even one time in the very beginning of kind of gender fluidly being very public. This person this girl came on and talking about her partner made the partner upset because they were getting ready to travel overseas. And she was worried that someone would recognize her from the podcast, and she didn't want trouble. So that's a great episode nobody will ever hear. I once did an episode with a young girl with type one who in my best estimation had some sort of a breakdown while we were talking. And I I began to talk to her like she was my daughter. I continued the recording so that she could share it with her mother. And so that's never been out. I was I once recorded with a person whose microphone was so bad that it just didn't work. And there was one time in the middle of a conversation that the conversation took such a strange turn that it made both of us very uncomfortable, and we just deleted it when it was over.

Howie 1:13:27
You cut it you're like man, my recording cut out. That actually looks funny. I hope there's no the last one I heard was when you're like I said you were yelling at the lady that had a woodpecker in the back. I think that was the Canadian lady actually yelling at her. What do you do? You're like, Ma'am, can you fix your microphone? And she's like, Oh, I'm sorry. I was like it's pressing against your shirt.

Scott Benner 1:13:46
And she's like, it's a woodpecker. I'm like, it's not a Woody Woodpecker. I would think that was delightful. The last one was really crazy because I was talking with a person, a woman in her 30s and we were having this like loose, happy just like jokey conversation. It was a lot of fun. And halfway through it, she just kind of took this great left turn and talked about a sexual assault like out of nowhere. And I did not it was hard I didn't I didn't adjust quickly enough. And it just got I mean like literally like imagine if you're telling knock knock jokes with people and a half an hour into it. Somebody's like I was date raped. And you're like what, like it just no transition was very, very odd. And the rest of the I tried to pivot. And I thought I did. But even as look at backing on there was a couple of just uncomfortable moments in the middle. And it ended and she's like, I don't want anybody to hear that. I went I agree with you. I was like, I'm gonna delete it right now. And I just did and there was nothing wrong with it. It just was. I don't know how to put it it was it was just very awkward and strange and it didn't do justice to the to the topic. All of a sudden, you know what I mean? Like, in so those are the only ones that I've ever, ever not shared with anybody.

Howie 1:15:07
And it's true. It's like, do I have to report this? Um, I don't know what's going on here. This is not exactly what I was

Scott Benner 1:15:12
prepared for. It was just very strange, you know, like, and it's like, okay, like, I completely agree with you. Like, let's get rid of this. It was nice to meet you. I'm sorry that this went awkwardly, but I don't know what happened. I can never decide. I never asked her. And it was just wasn't appropriate to ask her like, Did Did she just get emboldened and blurted out? Or was it just an in artful, you know, you know, injection of a different kind of information? Or was it that we were so joking along that it took me so by surprise, I don't think the next thing I said was appropriate. Like, do you know what I mean? Because I don't even know if I knew what I was saying at that point, like, so I don't, you know, if you've never made a podcast, it's your brains always a little ahead of what you're doing. Because I'm listening to you. I'm also formulating a question. I'm also trying to imagine where the conversation is gonna go. Like, I'm doing a lot while I'm talking. And I think my brain drifted ahead of the conversation. And we basically went from like one thing to something drastically different. And I just didn't pivot fast enough. And it was just I don't know, anyway, those are the only ones like I've never, I don't hold on. I think everybody's interesting. I love hearing people's stories. You know?

Howie 1:16:27
That's good. I mean, it shows it shows that you're, you do ask good questions. And it's, it's not pre programmed, and you lean into the conversation. So

Scott Benner 1:16:36
I thought that's what you were able to do. Did we miss anything that you wanted to talk about? Is there anything left on that paper over there? That's funny.

Howie 1:16:42
No, I think I'm absolutely happy with hopefully, what we got to share out, you know, I wanted to be cognizant of there is one thing is the, the second kid that is not the diabetic, and being very mindful of the potential not getting attention. And what I mean by that is, so for example, if one daughter is has a low blood sugar, and the other daughter wants to read to me, the tendency is gonna go to the daughter with a low blood sugar. So the perspective of the other kid is very, very important. And I also mean by that is, I've seen my sisters, for example, have to deal with, you know, we got to cater to how we because of circumstances. So it's almost like my sister's adversity is not allowed to be brought up, because it's not as drastic as mine are. So I think that's something that one eight actually add unnecessary guilt to the diabetic, because it's like, no, you can have adverse, so you can have problems, too. It's not a scoreboard. Yeah. So I think that's what it is almost like, you can't convey that your sister or somebody shouldn't have something difficult, because it's not as difficult as what you have. So that's just something to be mindful of, is not reinforcing that as a parent. And being mindful of the nondiabetic kids perspective,

Scott Benner 1:17:57
I like to to how you, you spoke pretty clearly earlier about not wanting to restrict foods or say things are out of balance, I think, a good relationship with food is incredibly important. It's so easy to create a eating disorder around type one. So I love the way you're thinking about that, that we do the same thing here. You know, I don't, I want to say like, I seriously mean this, I don't, I don't care how people eat, like I have a whole series of how people eat. It's literally called how we eat. And people come on and talk about all the different ways that they eat carnivore, you know, flexitarian, you know, all kinds of different stuff. And I just think people need to understand how insulin works. And once they understand I went somewhere, you go, you know, God bless, like, go eat any way you want, you know, but I think it becomes a problem. If people run to an eating style in lieu of understanding how their insulin works. You know what I mean? Like it just absolutely, yeah, that's kind of how I think about it.

Howie 1:18:55
It's the folks that work out don't have the proper diet, don't expect the same type of result. And so you have to understand the impact of the insulin.

Scott Benner 1:19:02
Yeah, you just need to know how insulin like whether you're gonna eat a low carb meal, or fish or all vegetables, or, you know, you're gonna go to Burger King. Like, I just want you to understand how the insulin works. And then once you do that, you should go live your life, you know. But But yeah, but I do. I think that, especially when kids are growing up, like, if you tell them like this, you know, if you scare them, like, we can eat this, you do run the risk of, you know, it's a risky thing to say to a kid, like eating disorders or are not. There been a lot of people on here that have had them, and they're, they're super serious and very difficult to get out of once you're in. And, you know, it's just it's something to be aware of, too, so I liked

Howie 1:19:47
and even short term, your kid may sneak food and not take insulin to cover it. So even if they don't, if that doesn't impact, you know, the eating disorder side, which is obviously very, very, very difficult. It's even the short term issue is like, oh my gosh, Let me hurry up and eat this. For my parents see,

Scott Benner 1:20:01
yeah, well, that's how those that's how the disorder start, like I have to hide it. I can't tell people won't take insulin for it, then when people learn they can manipulate their insulin to lose weight that becomes incredibly dangerous. You know, there's, there's, there's a ton of different reasons why you want to build a very normal relationship with food with with diabetes, for sure. Healthy food, like, Listen, don't get me wrong, if you asked me to make a decision, if you're eating McDonald's every day, I think you're doing something wrong. Like if you're asking me from a personal perspective, but again, if you're eating McDonald's every day, and that's what you want to do. I think you're probably making other health ish decisions that are poor, but I still want you not to have a bunch of spikes and lows later, you know, I mean, you don't, you don't deserve poor diabetes health, because of your eating choice. I know that seems disjointed a little bit, but I think you should eat healthy. But if you're not going to, like, you know, it's not a perfect world, I can't We can't make everyone do exactly the right thing. You know, the best thing for them, so if that's going to happen, they deserve to know how to use their insulin. You know that that to me is just makes sense. But

Howie 1:21:12
absolutely diabetic and non diabetic should eat healthy regardless. So yeah, 100%

Scott Benner 1:21:17
but if you're not, if listen, if you can't visit a reason why you can't I mean, maybe it's money, maybe you're buying processed food, because it's cheaper. Maybe you're you know, maybe have a food addiction, maybe you just don't know any better. You still you don't deserve to be wandering around with a 400 blood sugar because of that. So anyway, that's how I think of the podcast in my heart. It's about using insulin. Yeah,

Howie 1:21:39
no, I appreciate that. That's awesome perspective. And I'm glad my wife encouraged me to, to pay attention and listen, and obviously the dual benefit of one learning something and then to showing the the resources that you provide to the 18,000 plus followers.

Scott Benner 1:21:54
Well, that's just in the Facebook page. I've learned that a lot of people listen to this podcast. So it's the weirdest thing is that apple won't tell you how many followers you have, like how many subscribers? It's the one thing they won't tell you and most people listen on an Apple product. Like a great knowing. Yeah. Is it will Spotify is the next most popular one, I think. No, I mean, it's annoying. You can't get the data. Yeah, I don't know why they won't share it with the the people who make the show. So you get downloads completion, like how I know how long people listen, on average, which I'm in I'm incredibly proud of how long people listen to the episodes. But be a you don't get an exact number of people I did you know, it's funny the other day, Spotify does this like thing at the end of the year where they tell you like your most listened to songs. You're most listened to podcasts and people have been tagging me, you know, like your my my number one podcast and one woman had 12,000 minutes of listening in the last five months. And I was like, Oh my God, that's a lot. And I did the quick math, I was able to divide 12,000 by 60. And she she listened to about 200 hours of the show. So my assumption is let's, let's say she downloaded 200 shows in the last five months. In the last five months, the show's had over a million downloads. And I thought of her as a person who listened to a lot. So then I was like, well, is everyone listening that much? Or they're just way more people listening to that? I think because they everybody can have listened to 200 episodes in the last five months right now, but doesn't make sense. So it's just it's an unknowable thing for me. That's That's it. I don't even care. But I would tell you there's a lot of people listening this the podcast this year 2021 is going to have over 2 million downloads just in the calendar year.

Howie 1:23:47
And it's actually hard to find the old ones. So that was challenging is on at least I'm very inexperienced on just Apple products in general even though I have one. Yeah, so it's even hard to find ones beyond I think past the four hundreds on yours. So scroll,

Scott Benner 1:24:02
scroll, scroll. You gotta go to the setting that says see all podcasts I think and then just scroll like a lunatic.

Howie 1:24:09
Yet for some reason mine stop mine. Unless I'm doing still don't have my wife show me. Yeah. I liked your Hearthstone. I liked the humblebrag 18 Oh, that's just on the Facebook page. That's pretty. I like that. Oh, yeah,

Scott Benner 1:24:19
that's not a humble brag. I'm not being friendly. But I'm incredibly impressed with myself. That Facebook page is actually legit. And it's a really wonderful place. Like I I'm proud of how it, how it operates and how people act in there and how they help each other. It's really cool. But yeah, I just it's interesting, though, because you can look at the Facebook page and think, Oh, this must be all the listeners of the show. But it's not nearly a fraction of them. As a matter of fact, a lot of people on that Facebook page. I don't think some of them you know, the podcast exists. They just know what's a good Facebook page.

Howie 1:24:54
And that was the other way. So when I was trying to get the information on the number of listeners, I actually was podcast first. Then my wife showed me the Facebook page secondarily. So I would imagine the same things happening reverse.

Scott Benner 1:25:05
Yeah, yeah. I think one feeds the other, it kind of goes back and forth. And, you know, I'm trying to do some math here for you real quick. So the podcast is 4.6 million total downloads right now.

Howie 1:25:20
That's amazing. That's awesome.

Scott Benner 1:25:21
If I divide that by, like, just 550.

Unknown Speaker 1:25:26
So hold on a second. 4600123.

Scott Benner 1:25:35
Yeah, so if you think about it this way, if, if, if those downloads represented, say, everybody listened to every episode, there'd be about 9000 people who are listeners, but there's no way that that's the case. Right? Like, No, everyone hasn't listened to 550 episodes. That's just obvious. But from there, I don't know how to do an average of how many people have listened. So I don't know how to do the math, like, you know, is the average 50 band do? Is it 100? You know, like, I genuinely have no idea. So you kind of do that. You just kind of do that math. Like let's say everybody, on average listened to 100 episodes, then there's 46,000 plus people who have listened to the podcast.

Howie 1:26:18
Now it makes complete sense. Yeah. And this one's probably going to generate a couple 100,000. So those numbers should jump up. Ya know,

Scott Benner 1:26:24
I think just you being here, honestly, is gonna make you 100% You're a difference maker, for sure. Oh, absolutely. All right, man. I hope you have a good day. I appreciate you doing this.

Howie 1:26:35
No, thank you so much for the time and attention and the education most specifically for selfish reasons. I really, really appreciate the guidance and and what you're giving me selfishly here,

Scott Benner 1:26:44
I think that you're, you're a person on the precipice of a five, anyone seeking the fives. And I have a soft spot in my heart for people who have had type one for a really long time, because I imagined that it must be very difficult to go through all these different iterations. And because a six to you, I would imagine is seems like the pinnacle because of how you've lived through it. You're right, I'm happy with the six. Happy, are you kidding me? I've been your fireworks coming out of your ass.

Howie 1:27:19
Mom's my mom's like, 74. She's like a six, three. I'm like, at least I'm not like a 74 year old woman.

Scott Benner 1:27:25
I imagine your mom right now looking at your Dexcom

Howie 1:27:30
Thank God, I don't have to follow up. The best is like mine goes in and out of Bluetooth. And my wife looks at it and like she'll tell me stuff. Like just finally, just leave me alone.

Scott Benner 1:27:40
Well, man, listen, I'm not saying there's anything wrong with your management style. Like I genuinely mean that I just think no more there if you want it.

If you don't want it, I understand.

Howie 1:27:50
I love to print the fives and I'm going to show you my chart. So I'm the first thing to do is lower my lower my targets and raise my raise my raise my low, I'm sorry, lower my low and lower my high.

Scott Benner 1:28:00
Here's what you're gonna do when you're done, go to juicebox podcast.com, scroll down a little bit. And there's a section called algorithm pumping. And there are a bunch of episodes there about looping, which is just a different algorithm, I think if you listen to them, and there is one there about control IQ as well. But if you listen to the looping ones, you'll get more ideas about how to kind of manipulate the algorithm a little bit.

Howie 1:28:21
Yeah, cuz when you said my daughter loops, I thought that was like a specific pump that I never heard

Scott Benner 1:28:25
of. No, it's It's literally, you download off the internet, some lovely people, I think the man who made mine lives in Russia, I think you download the code, you build the app yourself. The amazing people online built these like little like Bluetooth links that link the algorithm on the phone to your pump. They mean they hack the pumps, you know, so that the I mean, Omni pod is not something they offer, you know, from the company. It's all do it yourself. I didn't realize that. Oh, wow. But it adds it adds more flexibility for targets is that really the biggest deal and the one we're using has auto Bolus. So like where control like you see should go up and it raises your Basal. My daughter's boluses. So you get a little more instantaneous, you know, you know what I mean? Yeah, that's, that's what I hated

Howie 1:29:18
about Medtronic pump technology, centralized key will give them micro Bolus, but it's still not enough. Usually

Scott Benner 1:29:24
not enough. Yeah. Now these things need to get more aggressive. And, and I and seriously, like, I listen, I have the opportunity to talk to people at a company levels all the time. And I'm always advocating like, I know it's an expense, but you gotta go back to the FDA. And you got to you got to do more testing to prove that you can have lower targets. It's a big deal, like let people have more flexibility with their targets. But you see, the bigger problem is that they have to run a study. That study costs a lot of money, and then they've got to take it back to the FDA and go through the process again. You know, but I just I keep pushing wherever I get the opportunity. So I hope people seem to listen. Seems like your work gets done quicker. Yeah, probably, but I know people listen, like I know. There's somebody really high up at Medtronic that listens to the show. So I know people hear me and I'm telling you that it's really important you have to spend the money and do it

a huge thank you to one of today's sponsors, GE voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. You spell that G VOKEGLUC AG o n.com. Forward slash juicebox. I'd also like to thank Ian pen from Medtronic diabetes for sponsoring this episode of the podcast and remind you to go to ink pen today.com To learn more about that insulin pen, and of course touched by type one.org. Go get your tickets, they're free

hope you're enjoying the show. If you are, please share it with someone else who you think might also enjoy it. And so I want to thank everyone who's ever taken the time to share the podcast with someone else. If you've already taken the survey AT T one D exchange.org. Forward slash juicebox to remind you that if you haven't, it takes fewer than 10 minutes and would be a huge help to me, the podcast and people living with type one. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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#706 Bold Beginnings: Adult Diagnosis

Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.

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 706 of the Juicebox Podcast.

Today is going to be the second installment of the bold beginning series. While you're listening to this episode, 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're a US resident who has type one diabetes, or is the caregiver of someone with type one, please consider going to T one D exchange.org. Forward slash juicebox. To take the survey, the T one D exchange survey benefits people living with type one diabetes, it's incredibly easy to do and will take you fewer than 10 minutes, T one D exchange.org forward slash juicebox. Also, today, you're going to hear Jenny Smith, Jenny is a CDE. She has had type one diabetes for over 30 years. And she works at integrated diabetes.com If you're interested in learning more about what she does.

This episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes in pen is an insulin pen that talks to an application on your smartphone and gives you much of the functionality that you will get from an insulin pump in Penn today.com. Today's show is also being sponsored by touched by type one, I need you to go to touched by type one.org. When you get there, go to the program's tab, click on annual conference and get your free tickets for the 2022 touched by type one Annual Conference, which will be held on August 27. in Orlando, Florida. I think last I heard, I'm going to be speaking, I think in three or four different sessions there. So come on out. Let's talk about some diabetes touched by type $1. Work. So Jenny, here are the questions that adults asked in the Facebook group. And that is, here's a statement. This one says that newly diagnosed those are often treated as type twos for a while, then we get tested and learn why nothing ever quite worked. I think a lot of should be more widely known about. So if you're diagnosed as an adult, I mean, Fair's fair, what I hear from most people is and it's, it's wrong, but doctors look at them. And if they look like they're reasonably in shape and fit, they think they have type one. And if they look like they're not they think they have type two, and it's very common to be to be stuck into a category without anybody.

Jennifer Smith, CDE 3:12
Correct. And that's in a I mean, what you just said is also in an environment with doctors who really are thinking type one thin, normal size looks, you know, like they maybe are an athlete or something like that. I'll actually say I mean, I've got a number of people that I've worked with over the years that are athletes, like I've worked with a couple endurance athletes who were initially misdiagnosed in the emergency department, as type two and sent home with completely a lack of information and a prescription for oral meds that were not going to do anything for them.

Scott Benner 3:54
Yeah. Yeah. You'd be surprised how many people I've spoken to who are dismissed at their diagnosis because the very next statement here on in our questions is, when I was first diagnosed as an adult, I couldn't get in to see an endo for a while because I wasn't quote unquote, critical and I wasn't hospitalized for DKA. And one of their first questions was, how do you even know I'm a type one. And you know, nobody does antibody testing right away for you. And this person says I just wish I would have known to ask for a C peptide test. When this was starting. It is not uncommon at all handful of metformin get home, take these come see us in a month, let us know how you're doing except you don't have type two diabetes. You have type one diabetes, and that's not going to help you. So and then you are in a real you're at a risk then a significant risk. Yeah.

Jennifer Smith, CDE 4:48
Yeah, absolutely. And I think that the issue there too, is adults. We're we're very misinformed when it comes to our education system. All right, we just we really are in terms of many health conditions, but diabetes included, there's still a lot of really good misinformation out there about diabetes. And so as adults, if you have all these symptoms, and you have no knowledge of diabetes, no personal history from family member or friend or anything, you may go to the doctors because you don't feel very good eventually. And then you get diagnosed, we are told your type two diabetes, well, maybe you don't even know there's type one diabetes, or you don't even know that you should ask to say, Well, gosh, this doesn't seem to be what I you know, what, what I would fit into for a diagnosis? I think so I think teaching is important. Yeah, it's

Scott Benner 5:48
important to know that you can be thin and lean and healthy and have type one or type two diabetes. Correct, right? I mean, and there's just so many in here, like I was diagnosed a month ago, at age 55, a week after my birthday. How was that possible? No one in my family has this. I was 50. My first question was, what the this person is obviously shocked. And then the next thing I want to get to, which I think is super important is, and I won't read the whole thing, but diagnosed at 47 years old, full time job, fast paced lifestyle. They can't get started, really, they don't know anybody that has diabetes, they're busy, they get up, they go to work, they're counting. They're I mean, people end up being hopeful, right? Like this person probably lived their whole life, you get sick, someone gives you a medication, you take two a day for seven days, you feel better. That's that, right? What you expect when this happens. And then when that's not the case, they say, look, it's almost five years later, I still struggle with my Basal with my Pre-Bolus times, this person doesn't know what they're doing. And so

Jennifer Smith, CDE 6:47
and I think a big thing of it goes a little further than not necessarily knowing what they're doing. One, I've found, definitely, that adults diagnosed with type one and absolutely with type two, are very poorly educated from the beginning, in terms of what to do, but along with that is they've already had a life and a schedule and a structure to that life, adding in something that they haven't been given the right information many times from the get go. And now they have to disrupt a lot to learn how to fit this in, to what their schedule was. Whereas kids are, they're different. I'm not saying that it's not difficult, but it's different, because who's helping the child

Scott Benner 7:43
write it because when you're diagnosed as an adult, it's on you, it's on you. And when your diet when a child is diagnosed, some person I mean, hopefully, right? A caregiver basically stops the rest of their life to figure this thing out, because the diabetes is really a newborn baby, all of a sudden, correct can't help itself. If you don't know what you're doing yet. And it's a it's a very slow process and a scary process and, and a process where you feel like you're about to drop the baby every five seconds. And, you know, you just sit on the sofa. But, you know, it's funny to piggyback on what you just said, and the next question, somebody said that they got a ton of code, they got a ton of information in their education at the hospital, but none of it's happening in their real life. So what they, they felt like they left completely prepared,

Jennifer Smith, CDE 8:29
which is great to hear that yay for whoever educated you.

Scott Benner 8:35
And then there you go, you shop at home. And there's nothing there, the person actually said I had to start listening to the podcasts and reading posts in the Facebook group, but that they still feel out of control. You know, please do a show for older diagnosed people, a different issues like work pressure schedules, exercise, cycles, evening events, etc, etc, all these things, and it's very liquid. It's very true. I mean, Jenny, you know, like, if my daughter runs on a schedule, I can run her blood sugar, like it's nothing but if you start throwing in a bunch of different problems, ya know, and variables like this adult issues, it changes and I never go ahead and say that, you know, Sam, so no, I

Jennifer Smith, CDE 9:16
was gonna say you're AB you're absolutely right, adult issues are your own to manage to begin with, and many, thankfully, there are a good number of people who have a very supportive, significant other spouse, or a really good friend that, you know, gives them some support or help. I think one of the, not everybody has this option, but I've had a couple of people who've actually after diagnosis, they actually decided to do the best they could for themselves to really get an idea. They took one or two weeks off of work. And they said I am I'm just gonna I mean if I'm going to really nail understanding this as much as I can, and then I'm going to add this other variable back into the picture. I'm going to add work back. Now I'm going to add exercise back. It's but there are a lot of adults who don't have that option, you don't have the time you can take off. So you have to do diabetes, along with what was already in your life. And it adds a layer. I mean, I can say, as somebody who had had diabetes, long time before I had kids, adding kids into the picture has added a layer to my management that is very different than I did before.

Scott Benner 10:28
Yeah, I saw a woman walk out of an elevator yesterday with a libre on her arm, and she was lugging a baby, and had a four year old behind her. And I thought, oh, that's different than just walking off the elevator. It really is. You know, it's, there's this this next person said it this is very interesting, because I brought it up in the honeymoon episode for newly diagnosed but this person says, I thought I was doomed. I was in denial. And I spent days researching articles about potential cores, cures, excuse me supplements to prevent disease progression and everything. So they fell down a rabbit hole. Then they said they went into a depression, hopelessness. And on top of all that, blood sugar is all over the place. Yeah, yeah, let me keep reading, I kept calling my doctor when numbers didn't make sense. And they repeatedly told me it's okay, if you're 180 to 200 for a few hours after you eat, you're not damaging yourself unless this occurs for long term.

Today's episode of the podcast is sponsored by Ian pen from Medtronic diabetes. And I would like to tell you a little bit about it. The pen is an insulin pen. But it's not just an insulin pen. Yes, it has a cap. And yes, it has a needle and a cartridge and a little window where you can see how much you're dosing, little knob twist at the end and a button you push. It's an insulin pen, right, just like you expect. But here's the stuff you don't expect. How about an app on your cell phone that shows you reports easily shareable reports with data that is generated for up to 90 days in pen can do that because it's connected to that app by Bluetooth. The impact app is also going to give you an activity log. So you can see a list of recent actions including doses meals and glucose readings. Your active insulin remaining is right there on the screen. With that in pen app, see how much insulin is still working in your body. And in pen has a dosing calculator to help you take the guesswork out of dosing your insulin. The app uses your glucose levels, and a carbohydrate estimate to recommend the dose that's right for you. That sounds like a thing you get with an insulin pump. It even considers the amount of insulin that's still working in your body to help you avoid lows in Penn today.com. Forward slash juice box. One a digital logbook, in pen has that one carb counting support Oh, well, the pen app can help you estimate carbs based on your meal size. There's also a fixed dose option that allows you to choose the same carb amount for a specific meal each day. seems too good to be true. It isn't in pen today.com forward slash juice box, head over there now get started today. There are links in the show notes of your podcast player and links at juicebox podcast.com. To the in pen. And all of the sponsors of the Juicebox Podcast including touched by type one whose annual event is coming up in Orlando on August 27. And the Tickets are free. Did you hear that at the beginning of the show. Don't forget touched by type one dotwork. In Penn requires a prescription and settings from your healthcare provider, you must use proper settings and follow the instructions as directed, where you could experience high or low glucose levels for more safety information visit in Penn today.com.

Jennifer Smith, CDE 14:06
Right, but how do you stop it now? Like if it's occurring, and it's damaging long term? Well, then tell me what I should do. So I can stop it from happening long term. Yeah, excellent. Right. Like it's

Scott Benner 14:17
like, they feel like they're like, you could do a little math, you'll be alright. But that leads to a meth problem. Right, right. And it really is the same thing. Like I didn't I'm sorry, it's such an odd if anybody has a math problem, I'm so sorry. But like, I mean, it's just like, that's how it seems to me. It's just like, Absolutely, Hey, it's okay. Don't worry about it. But it's okay. Don't worry about we have so many episodes where people say, listen, they told me it was okay if I was up to 180. And then one day it was 190. And I thought well, that's only 10 More than one ad and then 200 was only 20 More and then 250 was only 50 More than 200 and I was okay with 200 Before you know it, blah blah, blah, blah, blah. Right and it's not it doesn't help you in this moment when here you On your house hopeless, alone, feeling depressed, unable to manage diabetes? I think the one of the, you know, I'll tell you a genuine I don't know if I would have said this five years ago, but having that Facebook page really teach me like you have to go find other people. Because for a little while, you need to know that other people live with this, and they do a good job.

Jennifer Smith, CDE 15:23
Because I was gonna do the same thing. Yeah, yeah, hope is incredibly

Scott Benner 15:27
important. And I'm not saying you got to go to some like type one retreat with people or something like that if you want to you can but but just knowing it I, I interviewed a girl this morning. I see if I can tell this really quickly. Last year I ever interviewed a girl from Canada who was allergic to insulin. i Yeah, figured it out. A doctor in Texas heard the podcast, she had a patient who was going through something similar. The doctor called me I put the doctor in touch with the person from Canada. conversations went back and forth. Long story short, the girl in Texas started using a Frezza. And she's doing much better now. During the conversation that I just had with her the girl from Texas, which is in the podcast summer, like go find I think it's called allergic dance on Park.

Jennifer Smith, CDE 16:20
All right. That's my alert that I should have turned off for going to pick my child up from the bus stop, which is not my job this afternoon. That

Scott Benner 16:29
kid can wait, Jenny, we're making a podcast. Wait, tell him to stand there a little longer, he'll be fine. But in the course of interviewing this girl from Texas, the mother spoke about how this is such a rare thing. But that she found a Facebook group with seven people in it who are allergic to insulin. And it was everything to her. Yeah, everything to find those other people, right. And I just think that it's not. For some people, it is not going to be intuitive to go look for other strangers and find comfort in them. But I am telling you, I've been doing this a long time. And not nearly as long as Jenny has been. And it's incredibly important.

Jennifer Smith, CDE 17:12
No I and I wouldn't 100% agree with that I would include for adults specifically too, don't be afraid to reach out for some type of mental health support to there's a lot that you have to navigate and it really helps to have somebody to even maybe help you get some structure or an idea of how to restructure things. I asked an adult as you said from a touch point, I I did not have diabetes friends, really, until I was an adult. I didn't. I had the people that I got to work with on a clinical bases. But I really didn't have anybody I connected with until I went to a diabetes like athletic training camp. Right.

Scott Benner 18:09
And you met people there

Jennifer Smith, CDE 18:10
and I met you it was it was like diabetes disney world to me. Everybody was beeping and buzzing and complaining about blood sugar's and how are you going to adjust before the five mile run? We're going to go on? I mean, it was I smiled the whole time that was there. Because it was exciting to connect.

Scott Benner 18:31
As as crazy as this might sound. I know this is a weird statement. But for you personally, if everyone in the world had type one diabetes, that would be better for you. You'd,

Jennifer Smith, CDE 18:43
right? I mean, the whole the whole world would just, it would just understand it wouldn't be a oh, well, you know, I'm gonna bring that special dessert for you because you have diabetes, kind of like the weird comments that you end up getting, right? No, just you don't understand. So sometimes that is even off putting for you as an adult to try to explain to somebody because there's so much missing that you can't explain in just five minutes of why you could actually eat the regular dessert if you wanted to. You just don't bother and you're by yourself. And then you're by yourself. And

Scott Benner 19:23
listen, I only have the context of a parent but I can tell you that when your child is diagnosed, you have no recourse you're not you know, I'm not I'm not I'm not dropping her in a in a basket or a fire station. She's my kid I'm gonna figure this out right

Jennifer Smith, CDE 19:36
she's not Moses you're not gonna let her go down the street

Scott Benner 19:42
I'm not very religious Jenny So I don't know that whole thing but it did pop into my head about should I say I didn't float it out or stream but I couldn't remember the whole parable. Anyway. The it slowly you understand it? And you don't you don't you give yourself over to it. It's a life change. As much as you won't want it to be at first, and you may do a really good job of giving diabetes, a lower impact in your life, but it's going to have one of the only, like, the only thing I can say is, you know, when you get a bad cold, and for three days, you just the world understands, you're going to lay down, you're going to be sick, and nobody's going to hear from you. And you find a way to make that time you do that when you're the parent of a child, you okay? Well, we're, you know, as an example, we were in the we had just renovated a portion of our home when our son was diagnosed, we'd done it, and we had it broken into two phases. For five years, while I learned about diabetes, my children had to jump out the front door, because I didn't have steps. And that is one, that's great. Yes, that is one of the things I put on the back burner, while we were figuring out diabetes, for Arden. And but when you're going to be an adult, and this is going to happen to you, there's no one there. I mean, maybe you have a spouse if you're lucky, right. But you'll be surprised at how many adults I see who try not to share their diabetes with spouses, which is a personal decision, you know, so you're going to have to say to yourself, I got to look at this 24 hour clock at this seven day, calendar this 30 day month, and find some time in here to just learn about this, and find a way to incorporate it because unlike a bad cold, it's not going away, but it will get you know, if I if I had something hopeful to say I would say that diabetes doesn't get easy. But sometimes you get so good at it that it can feel easy, some days. And those days sometimes grow into weeks, where you just go, oh, this was an All right, you know, you're gonna have to make that time in your life, you can't just put your head down and run through it, because it's not going to work that way. And you

Jennifer Smith, CDE 21:45
can start in from an adult perspective of a major change to your structure or your day schedule. Even if you just start with a basic of kids, then given this medicine called insulin, and I was told to take it, here. And here. If that's where you start, then that's That's it? Yes. Just take what you were told to take. And then moving on, you can kind of build on that. Especially if you've got technology, I would say that's another big one that adults should definitely ask about. I know, parents are definitely the ones to beat down knocked down camp outside the doctor's office until they get the products and the technology that they want. Adults do the same thing. Yeah, I asked for a CGM right away on diagnosis, you know, ask for a pump. And or start the discussion sooner than later, depending on you know, what you think you can handle

Scott Benner 22:46
to, to use a phrase from the podcast or something else, you should dictate the pace? Don't Don't let a doctor say, hey, we'll look at it three months back. No, no, let's do it. Now. You know, I want to get an insulin pump. Let's start that right now. I don't want to talk about it three months from now, you know, the other thing is, too, is you know, I tell people all the time, you might get a clunker of a doctor. Don't, don't don't suffer with it if that happens, right. And it's you know, I have a note here to myself, that children get treated better than adults do in medical situations. And it's because in my mind, it's a business. And if and if I see you treating my kid poorly, I don't want to come back here. So everyone's very nice and accommodating. It's how kids get treated adults, do not get treated that way. And by the way, if you are if your husband's a doctor, or your wife's a doctor, or you're a nurse, even if you're like you know, an OB nurse and know nothing about diabetes, your doctor is going to assume you know all about it. Yeah, and not tell you anything, because you're gonna think other nurse they know. And we know that's not true, too. So,

Jennifer Smith, CDE 23:55
in fact, in hiring my own Endo, or endos, you know, in over the past years as an adult on my own. I think since I've been in the profession of diabetes education. I've had more doctors who seem they seem almost standoffish, kind of scared to suggest and or talk about things. I'm usually the one to bring up the questions or hey, look at this. I'm thinking about this. What do you think about this? And I don't, I don't want that I'm paying you to help me. I don't want you just so you can write my prescriptions for

Scott Benner 24:36
me, I still need help with just a guy with a podcast. And every once in a while I get that I get the like, Well, what do you think I'm like, you saw what I think like that's the best I can do. What do you think? I'd love to hear what you think? Let's collaborate a little bit. It's it's not undoable. And I would I'd want to I'd want to finish this up by saying that I've interviewed you Dozens of people diagnosed in their 30s or 40s, their 50s and their 60s. And they're doing well. It's so possible to do. I would. I mean, listen, I'm biased. I'd find Juicebox Podcast type one diabetes, the private Facebook group and just lurk around and watch people talk. You can learn a lot that way. If you have a question great, if not just sit back and watch. And the Pro Tip series from the podcast that begins at Episode 210, with an episode called newly diagnosed or starting over, I think if you listen to the Pro Tip series that Jenny and I put together, it's absolutely free. I think you could get your a onesie into the sixes pretty comfortably. If you need any help find me and ask and I will absolutely ask. And if you're really, really lost, Jenny works at a place called Integrated diabetes, and it's at integrated diabetes.com. So you could

Jennifer Smith, CDE 25:48
thanks yeah, I was actually going to bring in the the fact that you've got a really wonderful list of endocrinologists. And I think there are even some diabetes educators within the list on the website on your website, right?

Scott Benner 26:01
juicebox, Doc's dot com.com Voc acids a list. It's curated by the people who listen to the podcast, who say that my doctor is cool with how I manage. I manage through, you know what I've heard on the podcast and you know, so other people can find them

Jennifer Smith, CDE 26:19
and you have some pretty good connections in a good majority of the states and bigger cities

Scott Benner 26:24
is getting bigger and bigger. It's not. It's not not worth your time to go check it out. You might find something near you for sure. Yeah. Okay. All right, Eddie, thank you so much. Thank you real quick when you get a dog.

Jennifer Smith, CDE 26:35
Oh, we've had a dog a long time.

Scott Benner 26:36
I know. I thought you have cats. Oh,

Jennifer Smith, CDE 26:39
well, we have a zoo. We have two kids. We've got a chocolate lab who's like 85 pounds. We've got two fish. We got two cats.

Scott Benner 26:48
I'm still recording, by the way, but I did not know your dog.

Jennifer Smith, CDE 26:51
Oh, yes. We've got more hair like floating around.

Scott Benner 26:56
That dog bark and I went, What the hell is Jenny dog sitting? I've never heard a dog barking all the time. I've talked to you.

Jennifer Smith, CDE 27:03
I know. Usually. In fact, I've heard your dog's bark before. And I'm I am surprised that in all the years he has not ever bar

Scott Benner 27:13
I swear to you, I thought you were dog sitting with that happen. I was like, although true.

Jennifer Smith, CDE 27:18
We often we most often do these more in the morning. And usually if we're getting deliveries, which I expect, probably something came and somebody knocked on the door, they usually come in the afternoon. So that could be why today

Scott Benner 27:33
you and I almost never do this in the afternoon, actually, that ever is the big deal. Sorry. Well, it's it's a holiday weekend. So I hope you have a great time. Thank you. New episodes of the bulk beginning series will come out every Friday. Thank you so much to Ian Penn from Medtronic diabetes, for sponsoring this episode of The Juicebox Podcast. Please remember to head over to in pen today.com. If you'd like to learn more about that insulin pen that talks to that app through Bluetooth. I'd like to remind you again about touched by type one, it's touched by type one.org. Of course, Jenny Smith works at integrated diabetes.com and bold beginnings episodes. And all of the episodes of The Juicebox Podcast are available at juicebox podcast.com. And in any one of your favorite audio apps, like Apple podcasts, Amazon, Music, Spotify, and stuff like that. If you need a list of apps that are free to use, by the way, I also have those at juicebox podcast.com, where you can head over to the private Facebook page for the Juicebox Podcast. It's called Juicebox Podcast type one diabetes. There are links there to all the series, tons of questions and answers from people living with diabetes, and links to audio players. If you're enjoying the podcast, please hit subscribe or follow in whatever audio player you're using right now. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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Test your knowledge of episode 706

1. What is the main topic of Episode 706?

• The Bold Beginnings series installment
• Insulin management tips
• Carb counting techniques
• Diabetes complications

2. What common issue do newly diagnosed adults often face?

• Misdiagnosis as type 2 diabetes
• Lack of access to insulin
• Immediate DKA hospitalization
• Over-prescription of insulin

3. Why do some adults fail to get immediate testing for type 1 diabetes?

• Misbelief that type 1 is only for children
• They have a family history of type 2
• Lack of awareness about diabetes
• Early testing always confirms type 1

4. What type of test is often missed at diagnosis for adults with type 1 diabetes?

• HbA1c test
• Blood glucose test
• C-peptide test
• Ketone test

5. What advice is given to adults newly diagnosed with type 1 diabetes?

• Start with basic insulin management
• Avoid all physical activities
• Immediately use an insulin pump
• Follow a strict diet plan

6. What did Scott and Jenny recommend about diabetes technology for adults?

• Delay using technology
• Ask for a CGM and insulin pump right away
• Use technology only if necessary
• Avoid using CGMs

7. What is a common feeling among newly diagnosed adults?

• Denial and hopelessness
• Immediate acceptance
• Confidence in management
• Lack of concern

8. How can newly diagnosed adults find support?

• By attending type 1 diabetes retreats
• By joining Facebook groups
• By isolating themselves
• By avoiding discussions about diabetes

Submit

Change Answers

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#705 Episode Full of Grace

Grace has type 2 diabetes... or does she?

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 705 of the Juicebox Podcast.

On today's program, grace is with me, she is shining light on the Facebook page. And her episode is a great look into what a diagnosis can look like when the doctors aren't quite sure what's happening. So we're going to hear Grace's story. And at the end, I'm going to tell you what grace just told me the other day. So this is many months after it's been recorded, and grace has some answers. I'll share with you what she's learned. Also, Grace has a really weird job, in my opinion, and somehow it's oddly connected to an episode a couple of days ago, but not really anyway, you'll see. While you're listening today, 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. Becoming bold with insulin, we're doing what grace does for a living. Where do you find out?

This episode of The Juicebox Podcast is sponsored by Dexcom and Dexcom makes the Dexcom G six continuous glucose monitor, you may be eligible for a free 10 day trial of the G six and you can find out@dexcom.com forward slash juicebox. Today's episode is also sponsored by in pen from Medtronic diabetes, would you like an insulin pen that does more than regular insulin pens? Well, if you do, then you want the in pen from Medtronic diabetes in Penn today.com. That's where you go to find out more. Don't forget to take that survey AT T one D exchange.org. Forward slash juicebox. All you have to be is a US resident who has type one, or is the caregiver of someone with type 110 minutes later, you'll be done with a survey. And you will have helped people with type one diabetes and supported the Juicebox Podcast.

Grace 2:29
Hi, I'm Grace, and I'm a type two diabetic as far as I know. And I'm an adopted mom, colon hydrotherapist. And I'm here to talk about poop.

Scott Benner 2:41
Nice. I'm only excited because no one's ever started off an episode like that. Well, let's, let's figure out a few things first, how old are you? 58. What do you mean, you think you're type two?

Grace 2:59
Well, I'm not making what's the word? I want to say? I'm I'm not making very much insulin. Okay. So I'm at the low end of a C peptide.

Scott Benner 3:15
And so you've had a C peptide test?

Grace 3:18
Yes. It was like 1.2 1.1 to one point, something like that. But I don't know if I'm Modi or not. I did do I paid for it myself because my endo didn't want to. She didn't see any point in me taking an antibody test. So I went paid for that myself and I do not have the antibodies. And then I tried to look into Modi testing. And from what I could see. It's like $2,500. And so

Scott Benner 3:50
I'm already confused. Hold on a second. So your doctor wouldn't just send you for a test.

Grace 3:56
No, she didn't see any point. She's like you either need insulin or you not. Oh, and I think that they're just, you know, I'm older. I've had it for a while. So I think she's just you know, in her head, she's pretty clear that that's what I am.

Scott Benner 4:14
A low level of C peptide can mean your body isn't making enough insulin and may be a sign of one of the following conditions type one diabetes, Addison's disease, liver disease, a high level of C peptide can mean your body's making too much insulin, it may be a sign of type two diabetes, insulin resistance, Cushing syndrome or a tumor on your pancreas. And where was yours at?

Grace 4:37
1.12 I believe it's right at the low end at the low end. Yeah, cuz I think like a point eight is type one from the test range that I had. Oh,

Scott Benner 4:48
yeah, I'm looking. I'm trying to find out right now. To see. Okay, so you took the test had a low range, but doesn't that More indicate type one and type two. I mean,

Grace 5:05
I would think,

Scott Benner 5:07
all right, second

minus ad thresholds denoted by Oh, I don't understand all this enough to talk about it threshold with fasting blood shoot really should be considered above 80 and below 250. Type Two diabetes over 250 under ad type one. Moody unlikely under ad and what was your skim?

Grace 5:41
1.12?

Scott Benner 5:43
Okay, so in our intermediate insulin secretion, is that level? If I'm reading this correctly, almost I don't know eight. All right, so hold on, we have to start over 1.12 Is that were you fasting?

Grace 6:04
Um, I don't think so. I don't, I don't really recall.

Scott Benner 6:09
Okay, so if you're not fasting, it changes. Under point two, type one. I think I'm reading this, right. This is this is why this is also confusing. And your doctor won't help you figure out more, whether you're type two or moody and he, the doctor just says it doesn't matter.

Grace 6:31
Yeah, just basically, if you need insulin, you need insulin. So what the deal was, is that for the last couple of years, because I was diagnosed like 30 years ago with type two, so for the last couple of years, I was at the point where I could only eat once a day, without my sugars going into the foreign five hundreds, okay, so that I was eating once a day, and trying to restrict my food to keep myself from having to go to the ER fees. And so the last endo never tested even never even did a C peptide. And so, that should at least she did, and that's why I got put on insulin. Okay.

Scott Benner 7:18
So you're for you're being treated as a type two, you're using insulin at meals and you're wearing a pump, right. Okay, so your so your, what's your Basal rate?

Grace 7:31
I've got four of them. And hang on, I will tell you, okay. One moment, please. From midnight to 6am, and 1.9, and from 6am to noon on 1.3 to 4.5. And then four to midnight, and point eight.

Scott Benner 7:58
Interesting, it's very interesting. I don't know why it's interesting, but I'm incredibly interested by it. And so, because I've never spoken to a type two who uses an insulin pump before?

Grace 8:09
Well, isn't that interesting? It is. Can I tell you how I got the pump?

Scott Benner 8:13
I mean, did you buy it legally, I hope? Oh, yeah, I

Grace 8:16
did. I didn't even know what a pump was, what it did, how it would be beneficial. And I started listening to the podcast, and you're like, you know, omnipod.com/juice box or whatever. And so I just did that. And then the next time I went to my doctor, she's like, I got your insulin pump. Like they sent me the demo. And I was like, I don't know if I want this or not or whatever. But Omni pod in my case. Like when I filled out the information, got in touch with my doctor, it all went through my insurance. Everything was approved. I went into a follow up with my doctor and she said, Well, your pumps ready. I'm calling it in, and I'm like, I didn't even know I was going to do it. That how

Scott Benner 8:58
magical my Lincoln. Yeah. Well, and you could have said, I mean, I'm assuming at that point, you could have just said I'd really don't want this if you didn't want it and that would have been fine, too.

Grace 9:09
Yeah, but it was intriguing, you know, because I had been listening to podcasts for a while.

Scott Benner 9:13
So you want to give it a shot? Yeah. Alright, so I'm sorry. Tell me again. How long have you had type two?

Grace 9:20
I was diagnosed. To the best of my recollection. I was diagnosed in my early 30s. And the year after the Oklahoma City bombing, I was in that. And so I don't know if like the trauma from that had anything to do with it. I gained 100 pounds in the year after the bombing. And I was diagnosed at the same time with type two and hypothyroid

Scott Benner 9:51
were you incredibly impacted by the bombing?

Grace 9:55
Yeah, I was. I was not in the Murrah Building, but I was like as the crow flies a block away,

Scott Benner 10:02
okay, did you Would you consider you had like traumatic impact from it?

Grace 10:07
Oh, yeah. Yeah,

Scott Benner 10:12
I gotcha. Well, that would be something, wouldn't it? But you also found out you had hypothyroidism? Where was that then being treated?

Grace 10:20
No, I found out at the same time that I was diabetic and had hypothyroid. But did

Scott Benner 10:25
they give you a thyroid medication? Yeah. How well did that treatment go? Did you have results that were reduced your your?

Grace 10:37
Oh, that was a kind of like your wife. That was a many year long fight. And I don't feel that I was. So I'm 58 now and that's when I was 32. Ish. And I want to say that my thyroid was not optimized until probably around 2017.

Scott Benner 11:02
Wow. Because I just looked up that bombing happened in 95. So it took 22 years to get your thyroid straight. Have you considered going to different doctors?

Grace 11:13
I have been to different doctors. This is probably my third or fourth. Endo.

Scott Benner 11:19
Interesting. Interesting. The endo is handling the thyroid.

Grace 11:25
Yeah, now well, they have been Yeah.

Scott Benner 11:27
Okay. And is your TSH, lower now? What is it now? You know?

Grace 11:34
I could look it up, I want to say it's probably around a one or two. But there's a big difference. I was like, consider myself self a thyroid patient advocate for a lot of years because I was so angry about all of it. But I want to say it's between a one and a two. But there's a definite difference when like being in range, obviously doesn't mean anything. But when you feel optimized? You can you can feel it.

Scott Benner 12:05
Yeah. Do you have any hot or cold tolerance problems?

Grace 12:09
I'm not really I have like a little bit of cold tolerance, but it's not from the thyroid because I have neuropathy in my leg. Oh, so I have it from that.

Scott Benner 12:19
Gotcha. When did you start managing with insulin? Just recently,

Grace 12:23
a year ago? I think it was on November 13 of last year.

Scott Benner 12:28
How long? You've been listening to podcast?

Grace 12:30
Since about that time. Right? Okay.

Scott Benner 12:33
So the podcast made sense to you and you started changing things or?

Grace 12:39
Yeah, I somebody I was in a different Facebook group. And somebody just mentioned Juicebox Podcast as I was like scrolling through I saw it. And I was like, it was one of those people that like, how do I even listen to a podcast? Like where is that? How do I get it? You know? And I figured it out and been listening pretty much since the beginning of since I started being on insulin.

Scott Benner 13:03
I think it's pretty impressive that you learned how to listen to a podcast considering before we started recording, you didn't think to turn up the volume when you couldn't hear me. It's a pretty impressive story now. It is in context. Well, okay.

Grace 13:20
Oh my gosh, so.

Scott Benner 13:21
So prior to a year ago, what was your one say?

Grace 13:27
I've had the ones that I can remember, I'm so mad because we just moved a year ago. And my old I keep everything not like a hoarder. But I have this one box that has all my taxes in it from the first time I ever started working when I was 18. All my lab results from the first time that I couldn't remember collecting lab results. And that got thrown away. So that was a little frustrating. But from what I can remember, I had a onesies that were like six, five, this is in the last five years 657585 10 Four when I was diagnosed, but back in the 2000s, early 2000s. I can remember when I was allowed to test my blood sugar that it was in the three and four hundreds.

Scott Benner 14:21
Was it does it sound like to me? I mean, does it it sounds like to me I'm wondering if you think the same like over the last five years, things were progressively deteriorating.

Grace 14:30
Things were progressively deteriorating. And I don't know if this has anything to do with it or not. I've been kind of researching. But in 2013, my husband at the time committed suicide. And so after that experience, I started experiencing a lot of things the the thirst like really Intense muscle cramps. And I, you know, I didn't really think anything about it at the time. But looking back now, I feel like that was like probably a hit to my body as well. So I don't know, do you have

Scott Benner 15:16
any other autoimmune issues?

Grace 15:20
No. And I really don't know a whole lot about my family. My sister had thyroid issues, she had nodules, and she had half of her thyroid, one side of her thyroid removed when she was 18. And the other half of the other side remove and she was 21. And other than that, the only thing that my family that I'm aware of that may possibly be autoimmune is that there is Alzheimer's on my mom's side.

Scott Benner 15:48
Okay. But you think that two big traumatic events might have kicked two of your problems in may be maybe, or at least the timing anecdotally lines up? Yeah, yeah. But you don't? Do you think you have type two diabetes?

Grace 16:09
I really don't know. I find it odd. It's not a common thing that I'm aware of. And I haven't really looked into it that much that people like, get type two, and then their pancreas is burnout, and they need to be on insulin, because a lot of times from what I'm reading is that they're so insulin resistant, and they're making a lot of their bodies producing a lot of insulin, but they can't use it. And so they get on insulin, but that's not the case with

Scott Benner 16:37
me. Yeah, you're just confusing. I'm hoping that by being on somebody might hear this and, and reach out to you.

Grace 16:45
Yeah, every doctor says I'm a complicated case. Yeah, that sounds

Scott Benner 16:49
to me like they don't know what they're doing. Yeah. I think somebody who understood it wouldn't find it complicated at all. Yeah. Oklahoma.

Grace 16:58
I don't know. I just talked like I am. From California, and I was in Oklahoma for 24 years and I'm in Wisconsin,

Scott Benner 17:07
Wisconsin. No kidding. A my brother's here right now. He just flew here from Wisconsin like 36 hours ago. Say bring your deer. He did not bring anything.

Grace 17:20
I'm alignment kugels. He's a boy. He

Scott Benner 17:22
flies very light. He barely comes with the clothes he's wearing. Okay. Why did you want to be on the podcast?

Grace 17:33
Well, I wanted to talk about what I never hear other people talk about, which is what I refer to as the other side of gastroparesis, because when you have slow motility, and you have trouble eating and what have you, for many people that also translate to slow transit of the colon, and then people have trouble going to the bathroom.

Scott Benner 17:59
So you have gastroparesis? How long have you had that?

Grace 18:03
I was diagnosed with that in 2004.

Scott Benner 18:09
How did it present?

Grace 18:11
It presented were all of a sudden, I could not eat and I started throwing up anything that I ate. And it was to a point where even if I tried to just like eat yogurt, and nothing else, like I was trying to find like was there one food that I could eat that I wouldn't throw up? And even if I tried to eat a little bit of yogurt or whatever, I would just throw up everything I ate.

Scott Benner 18:41
Okay? top line, gastroparesis is also called delayed gastric emptying. It's a medical disorder consisting of weak muscular contractions of the stomach, resulting in food and liquid remaining in the stomach for a prolonged period of time stomach contents, thus, exit more slowly into the duodenum of the digestive track. Anyone who just heard me say duodenum correctly. You're gonna want to thank Grey's Anatomy I don't know what it is. I just not to say it. And, and that happens to people with diabetes because of its like neuropathy almost just happening in your stomach. Yeah. Of the

Grace 19:22
vagus nerve.

Scott Benner 19:23
Yeah. Okay. Did you manage your type two at all for the years prior to all of this? How did you take care of it?

Grace 19:35
Here's the deal is that like, a lot of people I hear on the podcast, I didn't get any information like somebody gave me a picture of a plate. Like I think this was right around the same time that they very first came out with nutrition labels on food. And so they were big about the quote unquote the plate of food and You know, just the same picture that they still show today that looks like, you know, a five year old could understand it right? And so, that's about all the information that I got. And I did get test strips and stuff on occasion. But there's, for type two in my case, there was no quote unquote, management it was, you have diabetes, take a pill. And to me, it'd be like the same thing. Like you have hypothyroid take a pill or you have high blood pressure, take a pill, and that's that. There's, there was no focus. What's your blood sugar doing? How often are you getting high? Whatever, it was just like, you know, eat right and exercise and take this pill. And and that's that, I think.

Scott Benner 20:52
How long did you do that? For?

Grace 20:57
Good Lord, the math.

Scott Benner 21:00
Like decades?

Grace 21:02
Yeah, like three?

Scott Benner 21:04
And when you say eat, right, what did that mean to you?

Grace 21:09
Um, I just tried to eat quote, unquote, healthy, normal, get your vegetables in normal, just regular everyday stuff.

Scott Benner 21:19
I'm trying to figure out what that means to most people. Like, if, if I said, you get your vegetables in, and then you said, Oh, I can eat brussel sprouts, if I sprinkle brown sugar on top of them. And then, you know, like, that's how some people think of vegetables sometimes, like They load them up with. They just make them delivery systems for other stuff.

Grace 21:40
It has. It's been i Sorry, I didn't mean to interrupt you. Go

Scott Benner 21:43
ahead. No, I was gonna say is it's it's a very similar thing to when people talk about their blood sugar ranges. And they'll say, Well, I got I got low, so I ate something. And they think that their interpretation of low is everyone's interpretation of low. And they believe that means that that's the correct interpretation as well. But I still hear people talking about how they treat their blood sugar's at 100. Right? I was at 100. And I needed to get up, I'm like, Oh, I think you need to get it down still, but okay. Right. You know, and so there's this, this disconnect between what people mean, and how they present what they're saying, you know, I, I ate well, but if we kept talking, what I find out that that meant that when you went to McDonald's, you got the chicken, like,

Grace 22:29
at that time, possibly, but it's my food has fluctuated so much over the years. So, when you're first diagnosed, or when I was first diagnosed with diabetes, like, I never had to watch anything I did before ever, right? So then you just kind of start learning and you know, be the best you can at certain times, whatever, try to, quote unquote, eat whatever was healthy at the time, which has gone through different things. I mean, back then it was like a low fat thing, whatever. And so over the years, and I don't really remember them coming back to me and telling me you need to try harder, you need to try harder, you need to try harder or anything like that. So you feel

Scott Benner 23:16
hard me? How did you feel physically? Did you feel okay? Or did you did you live a life where you felt like malaise and tired and stuff like that?

Grace 23:27
Um, I feel like the malaise and tired thing and that might have been kind of the thyroid thing, because it's felt like there was a big onset. I felt really terrible. Like I felt kind of normal. It right before the bombing and that year after like gaining 100 pounds in a year, and not knowing where it's coming from or why it's happening.

Scott Benner 23:51
That really sounds like your thyroid. Yeah, that I'm sure that it was. Did you significantly change your activity or eating life? No, yeah, that sounds like the fire right to me.

Grace 24:02
Yeah, I wasn't doing anything any different. So obviously 100 pounds on your frame makes you feel you know, horrible in a lot of different ways earlier,

Scott Benner 24:11
you 15 feet tall. It probably wouldn't be good for you. Wow, that's crazy. I don't think I've ever popped my lips before on the podcast, but I just did it just now. I went wow. Wow, I have you lost the weight since then.

Grace 24:30
Um, it's gone. It's gone back and forth. I've since then, I had lost 125 pounds. And the last 50 of that was because I got sick and was throwing up my food, right. And then right after I lost that 125 pounds, and I was down to like 125 And I got to keep that off for about three months. And I guess because of the weight loss and they were trying to figure out what I was throwing up and everything was before the gastroparesis diagnosis. They decided in their infinite wisdom that I had adrenal failure, okay, because I was losing my hair and stuff because I was losing the weight so fast. So they put me on cortisone pills and told me that I needed to stay on them for the rest of my life where I would die. But I didn't find out till two years later, I think it was that the doctor never even did the proper test to determine that I had Corazon failure. And so I was taking it when I didn't need it. And that put 80 pounds on me gave me drug induced Cushing syndrome, and put 80 pounds on me within like six months. And that's, that's a hard deal to get off of. Yeah, great. So yeah, that's not fun.

Scott Benner 25:54
Wow, you you have run into a number of doctors that haven't helped you along the way. That's terrible. Okay.

Grace 26:05
All right. It wasn't the most compliant patient because of that for a long time.

Scott Benner 26:09
Tell me about that. You mean, did you notice that they weren't valuable to you? And then that didn't make you listen?

Grace 26:14
Well, especially the thyroid doctors, because I felt like that was a big injury with the, with the being on the cortisone and stuff, there was a whole host of problems that came along with that. And so when I would go to a new thyroid doctor, and they didn't want to do like the full battery of test or what have you, I was just like, angry walking in the door, you know, ready to go out? I've had doctors tell me if you're not going to take Synthroid. And that's what I'm going to give you that I don't even want you as a patient. And so I've just like, had to walk out the door before. And so you know, it's it's a frustration,

Scott Benner 26:55
I tried to tell people that that that lovely woman that I had on to do the thyroid episode, Dr. Benito, she was awesome. She's a diamond. And the they're very hard to find, yes, really, really difficult to find someone that can thoughtfully manage your thyroid levels. Not a not an easy, not an easy lift, finding people like that. I'm sorry, because it sounds to me like you were just having thyroid issues. And then they started dumping on like cortisol on to, you know, cortisol into you. And then that just made everything worse and, and masked. And they thought they were treating something. So probably everybody stopped looking at the real issue. Yeah, yeah. And you didn't have the internet back then either. No, right. Huh. Jeez, can you tell me something good?

Grace 27:43
Tell me something good.

Scott Benner 27:45
I'm looking. I'm looking to move this the other direction? Yeah.

Grace 27:50
Where did we want to go with this, you won't go back to let's talk about the pooping thing.

Scott Benner 27:56
I was gonna say, you mentioned poop. And I mean, we're halfway done already. So like, what do you do for a living?

Grace 28:03
I'm a colon hydrotherapist. Now,

Scott Benner 28:05
how do you get into that, and I don't mean to get into

Grace 28:09
that. Get into that because you're sick. So what happened with me besides the the throwing up the food and stuff, and I was on a predominantly liquid diet for, I want to say about a decade, just because I couldn't process solid food very well. And so I had trouble passing food. And in forums and stuff on the internet, people talk about that, but it's not something people really want to talk about not being able to go. So what I kind of wanted to put out there for people is just my story and things that helped me, because I was at a point where the doctors were giving me a gallon of MiraLAX every Friday night to try to go. So it was like doing a colonoscopy prep every Friday night. And so I would go and then that stopped working. And they've had me on a bunch of different laxatives that start working and they have me on some newer drugs Linzess ama teas and my glucose is 123 and it's beeping at me. And those didn't work. And the only way that I could get stuff out was like those old grandma like red rubber enema bags. I was doing. I go to work, come home, cook dinner, clean the house and then I go to the bathroom and I would they hold like one and a half, two quarts, something like that. And I was doing anywhere from one to 15 of those a night, every single night and succession trying to get something out of me. And my stomach would blow up like eight inches like I'd have to bring different clothes to work to wear because I just couldn't get stuff out. And so that was a weird way to live and they wanted to But when they diagnosed me with gastroparesis, and I couldn't go to the bathroom, it had gotten to the point where they wanted to give me a feeding tube and ostomy bag. And I didn't want to go that route, the ostomy bag really scared me. And so I just decided to go. I was like, if I can't eat, then I can't eat. And I'll just like, try to get nutrition any way I can. And so I'll just like, make my own juice and just juice and just be on a liquid diet and live like that. And I did that for a couple of months. And that changed a lot of things in a positive manner for me, but it did not help me go to the bathroom. And so it wasn't until, like 2017 that I tried colon hydrotherapy. And that worked. And I did quite a few sessions of that. And what that did for me, because the last the last five years from like, let's see 2012 to 2017. And I got to the point where I never even had an urge to go anymore. It was just completely absent. And so I started doing colon hydrotherapy, just out of desperation, which is basically kind of like a half hour enema. And after I did a number of those, probably like seven of them in a fairly quick order. It like, kicked in the peristalsis. And my colon and I started going to the bathroom every day.

Scott Benner 31:30
Alright, so hold on one second. How does this work? Now in my cartoonish mind, we just pump the water in my mouth, and then it just blows out the other side? I'm sure that's not what happens. So the water goes in your butt. Is that correct? How much how much water in your butt.

Grace 31:49
It can be up to 12 gallons. That being said, it doesn't all go in at once. It's a process. Like if I did an enema with just one of those bags that only gets like your rectum. And so with colon hydrotherapy, it goes in your rear end, and it goes throughout the entire large intestine, and just cleans everything out and evacuate everything out there.

Scott Benner 32:16
So this is not much different than if your ear is clogged and they get water behind your ear and fill up your canal and then it pops out the wax.

Grace 32:23
Mm hmm. Got it?

Scott Benner 32:25
Are there any reasons why a person wouldn't want to do this? Is it dangerous?

Grace 32:31
I'm not dangerous, per se. There are some contraindications for people with diverticulitis. People that have had any recent surgeries people with Crohn's and Ulcerative Colitis.

Scott Benner 32:51
So anything that's going wrong back there? Mm hmm. Yeah. So like, Yeah, okay. And you don't want to block your butt? Like, right there. Right.

Grace 33:01
Right. Or if there's, you know, any kind of bleeding or infection or anything in there. You don't, you know, like, you want to have a healthy column? Because I don't know. I don't know if that spreads it around. Or, you know what I'm saying? But

Scott Benner 33:15
how do you figure that out before you fill her up?

If you're using insulin, knowing what your blood sugar is doing is monumental. Is it going up? Is it going down? How fast is it doing that? Maybe it's steady? Is it 96? Or 150? Is it to 10? Or 183? Well, you don't want to check all the time with a meter. And even if you did, even if you had a great meter, like the Contour Next One. That meter just gives you a look into a moment, right? I tested my blood sugar at 9pm. And it was 140. Great. That's good news. I know my blood sugar's 140. But is it moving? How fast is it moving Dexcom can tell you that with the Dexcom G six dexcom.com forward slash juice box, use my link. And you may be eligible for a free 10 day trial of the Dexcom G six, you can find out what I'm talking about how great it is to know the speed, direction and number of your blood sugar at a glance. I will pick up my phone right now. It's an iPhone, but you could do this with an Android as well. I see my daughter's blood sugar is 130. At the moment, it's very steady. Actually. We just did a pump change recently. And we're just kind of bringing her blood sugar back down. You know how after a pump change, you might need a little more insulin here and there. Anyway, you know about that point is we're watching it right now. We're making boluses that are thoughtful and we're moving your blood sugar back to where we want it. This is all made much easier in my opinion by the Dexcom G six again, Dex comm.com forward slash juice box you will not regret checking out the Dexcom I'm gonna head right now to N pen today.com I n p e n t o day the microphones blocking my keyboard.com in pen today.com Oh, look at that. Here's the website, nice graphics, little video running very nice. Here's what you get within pen, you get an insulin pen. That's what you need, right? If you don't want a pump, and you want an insulin pen, wouldn't it be nice if it did some things for you? Not just the little Jabby thing with insulin in it, but had some other stuff? Like how about if it had a dosing calculator, or carb counting support a digital logbook? Or the ability to remind you when you needed a dose of insulin? A dose reminder, you say that sounds wonderful. How could it insulin pen do that Scott? Well, that pen that said insulin pen, the ink pen connects to an app on your smartphone. Oh, wait a minute. Technology you say That's correct. That app gives you a look at your current glucose level. dosing calculator, active insulin remaining glucose history reports, Activity Log dose history meal history. And of course, we just said current glucose. All right there on one screen connected to your insulin pen. Now you're interested, hear it in your voice? Yes, I hear your voice in my head. No, I'm just kidding. I don't hear you. But anyway, hey, listen, here's a little offer that in Penn has. Now this is only available to people with commercial insurance, of course Terms and Conditions apply. But you may pay as little as $35 for an NPN because Medtronic diabetes doesn't want cost to be a roadblock to you getting the therapy you need. And within Penn's access program, you may pay as little as $35. In Penn today.com, links in the show notes, links at juicebox podcast.com to Dexcom. In Penn, and all the sponsors in pen requires a prescription and settings from your healthcare provider, you must use proper settings and follow the instructions as directed, or you could experience high or low glucose levels for more safety information visit in Penn today.com.

Grace 37:26
For myself, or other people just

Scott Benner 37:27
talking about you Yeah, I don't know how they're viewed. Okay. Like, did you go to a doctor and say, Hey, I'm thinking of blasting my butt full of water. And I went off, it's okay.

Grace 37:36
No, that was just kind of like, that was kind of like an internet thing. And just meeting

Scott Benner 37:42
other people who had had success with it. Yeah, I say, okay. All right. So you did it. And not only did it help it help, I mean, because he was probably very relieving to get everything out, I would imagine. And then you started going more regularly on your own?

Grace 37:57
Yeah, I didn't go for predominantly I like I might have an urge once a month to go for, like the first. I don't know, seven years or so. And then like the last five years, I didn't have any urge at all. And then I did this several times. And then I was able to start going on a daily basis. I didn't always completely empty but at least I got stuff out. Yeah. And I didn't find out until this year, when I moved to Wisconsin, that I've had several operations for endometriosis. And evidently, there's a thing that they can do. My doctor my gastro referred me to it is called visceral mobilization. And that is where they just feel on your stomach and they press down. It's a form of massage, and they could feel adhesions. And I had severe abdominal adhesions. I've had five abdominal operations. So all of my insides are also besides the gastroparesis, all of my insides are stuck to each other. So it's kind of like if you went in your gut and like somebody put a spider in your gut, and it weaved a web over everything. So stuff couldn't move.

Scott Benner 39:10
Can they fix that? Well,

Grace 39:13
they're supposed to be able to fix it, like they go in and they break it up, they just press on where they feel the tightness, and they release those adhesions. And I was like, Oh, am I going to bleed internally or like what's happened and if you're, I call them the gut rep. Or if you're ripping stuff up inside of me, and he said, there's not very much blood tissue and that kind of stuff. And he said, it's kind of like if you took scotch tape and wrapped it around your hands with the sticky side out and then rubbed it on the carpet, and then tried to stick the tape back together. But unfortunately for me, they also told me I just found this out. The endometriosis doesn't necessarily stop when you get all your woman parts cut out, which I had done. You got a hysterectomy? Oh yeah, when I was 32 Um, so I guess that can still keep growing regardless. So for me, instead of being able to get the massage and and get the adhesions tore out, I have to do it for maintenance. And that made that also made a huge difference in being able to go to the bathroom and or have your belly

Scott Benner 40:18
massage. Uh huh. Yeah, it's done by a doctor is done

Grace 40:23
by physical therapist. My, my gastroenterologist referred me for it.

Scott Benner 40:28
Does it hurt while they're doing it? Yeah.

Grace 40:32
It's not really bad. It's not anything that like, lays you out or stops her stops you from doing your daily business or whatever it kind of feels like after you're done sore, like if you had done a like a hard, hardcore workout, like core workout. Do you have to go to the bathroom right after he finished? No, no. Okay, now, but after he started ripping stuff apart in there where everything was stuck together. I was able to go from like once a day to sometimes three or four times a day.

Scott Benner 41:03
Interesting. How often do you do the massage?

Grace 41:07
I still have to get it probably once a week, once every two weeks just because I'm kind of messed up inside. So

Scott Benner 41:16
does your insurance companies that do hate mail?

Grace 41:19
Well, my insurance company this is interesting. So I happen. I still got stuff growing in me and causing these adhesions, endometriosis, or whatever is still growing in there and causing issues. And so insurance wants you to get better. They want you to progress or they if you don't progress, then they don't want to continue covering your treatment. So I had to go outside the insurance. And I have to pay cash to get this done. Because the insurance will not allow me to do it for maintenance. Oh, yeah. So it's just you know, it is what it is. Jesus. Why would that? I don't know, why did they sometimes cover some insolence and not? And what you know what I mean? It's just

Scott Benner 42:09
intermediary. So this is interesting, because it is like an inflammation condition, but it's not characterized as autoimmune.

Grace 42:15
No, yeah. And I looked at it's interesting. Yeah, nothing with me as autoimmune. They all say I'm a complicated case.

Scott Benner 42:24
Yeah, that doesn't seem comforting at all. Grace, you've taken me a number of different directions. I know. It's causing me not to be able to find my, my, my North here. My compass is just spinning in circles. Are you okay? Yeah. Generally? Good. You think of yourself as being well?

Grace 42:49
Well, as well as I, you know, it is what it is. But yeah, for the most part, I will tell you, you know, and I've mentioned this probably on the Facebook group before, but I've had such a weird thing from all the different doctors and so many different things that the doctors didn't know what to do with or whatever. And I went through a period of time where I really didn't like, have any hope about things. And my quality of life was kind of down and the podcast from everything I've been through in the like, the last 30 years was the the only thing that gave me not only hope, but like tangible hands on experience that actually made a difference. I'm glad. Yeah. It was huge. Because I was like, once they told me that the diabetes thing with the insulin thing, I was like, I don't want nothing else. I can't hang him, you know? Yeah. And now it's not like that big of a deal.

Scott Benner 43:55
Well, you're a one seat. So you, you came into the group like a wrecking ball, like in a like a delightful, sparkly wrecking ball. You were just like, I'm here. I love this podcast, like you were very, super excited. I appreciate it, actually. And so you're just saying that you got management tools from the podcast right at first? Absolutely. Yeah. And that was a big change for you a big difference.

Grace 44:16
It was huge change because I didn't, anytime I had hope in the past for something. There was never any resolution, there was never any, like, how to go forward, how to find somebody to help me or how to help myself. You know, it was just like a bunch of roadblocks and dead ends until the podcasts, okay? Because I really didn't know how I was going to deal with the insulin because in other groups, I had run across things where people were just, it was fear based, you know, and the advice you get was fear based things like don't ever drive a car if you're under 100 or you know, just craziness and then I found you and I found the Facebook group and it just It really helped. I mean, my last one was a 6.0. And was it really? Yeah, so I started out 10.4 A year ago and then I was a 6.0. I had got down to a seven I think it was on MDI. And then I switched to the pump and that pump to the Omni pod, and it's, I'm glad expect to be probably in the fives next time

Scott Benner 45:30
and you're managing that well with gastroparesis too.

Grace 45:33
Yeah, and I guess it's, I guess it's a, you know, a combination, because there's gastroparesis, and then there's the adhesions, because the guy that did my massage, he's tells me things like, I didn't know any of this, that your stomach has to turn, like a quarter of a turn every so often to digest your food. And my stomach was attached to my ribcage and attached to my diaphragm. So it couldn't move at all. So that has, so there's like a complication between, you know, and then all the rest of my organs are like that.

Scott Benner 46:11
So you definitely have gastroparesis, but additionally, the endometriosis and the scarring is making things worse. Yeah, got it. Jesus. Is there any? Now it's a stupid question. It's got nevermind. I never.

Grace 46:29
I love the stupid question.

Scott Benner 46:30
No, it's such a bad question. I'm not going to ask it. I know the answer already. And so does everybody else. Like just I don't even know why it popped in my head.

Grace 46:39
Okay, I can, I can eat I've been able to eat better since I've been getting the colonics and eaten better since the visceral mobilization massage. So it's made not only has it made a difference in the output, but it's, I'm not on a predominantly liquid diet anymore.

Scott Benner 46:56
Yeah, so you're eating solids, but, but you're still using the colonics to make sure that you're clear. Yep. And you give them to yourself, right?

Grace 47:06
Well, I can now yeah, now. Now that I'm doing it for a living, you know, it was it was, this is how it can be for some people. So if you're, like, if you can't go at all, and nobody can help you, and it's severe enough that you have to get it, then you know, you I'm talking about myself. If I was having a really bad flare up, and things weren't moving, it could cost me anywhere from four to $700 a month to go to the bathroom. So it was more than my mortgage. Oh my gosh. So that's why I and I had an opportunity to buy a business. So I did.

Scott Benner 47:47
So I have to ask you a couple of questions that are gonna be silly. But I need to know these things. After we put the water in, don't come back out the tube.

Grace 47:59
Hey, well, the tubes really small like the one I have the tubes really small the size of a pencil. So it just goes in and the water shoots in and then the waste in the water come out around it all that happens all at the same time to where it's like a giant reclining toilet. Okay, so it just goes down out the sewer.

Scott Benner 48:21
I'm going to Google hydrotherapy chair, right? Is that what I want to do? To see a picture?

Grace 48:30
Google colon hydrotherapy open system?

Scott Benner 48:34
colon hydrotherapy? Open Look at this. Hold on a second. Okay, do people generally are they super embarrassed the first time?

Grace 48:56
Some people are I get a lot of people that come in because they're they're having issues or they're severely impacted and what they give them at the hospital doesn't work. So they come in to see me to, you know, get stuff out. So I have people that are excited to do it. I have people that are mortified. You know, it just kind of runs the gamut. I have a lot of sick people. And then I have a lot of people that just are kind of, for lack of I don't know how to say this politically correctly, but they're like health freaks. Right? Right. And I call them my little moon children. Like they like to come in and get it done when the moon is full and whatever, you know.

Scott Benner 49:36
Alright, listen, I don't question people. I but I have questions for you. What's the weirdest thing you seen? It's a hemorrhoid. Right? A huge one. What is the

Grace 49:45
I don't the way that that chair is designed. I don't see people's parts. Wait, like the one that I have. The one that I have is the nozzle is self inserted. So somebody lays down on This, they insert their own nozzle, and then they cover up with the drape and then I walk in. So I don't see any of that. There's another system where the nozzles bigger and it has an intake and outtake. And then you kind of turn on your side and that one the person actually like inserts into you and holds it in there the whole time. So there's that's called a closed system. And I don't do I don't have that one. Well, I don't I don't see anything other than what's coming out. There's a clear tube that you can see what's coming out of you.

Scott Benner 50:31
How strong is the exhaust fan in the room? I mean, is it like a jet engine? Oh, there's

Grace 50:36
no odor at all. Wait, stop

Scott Benner 50:38
it. There's no odor. How could there not be any odor dust and the poop will come out?

Grace 50:43
It does. But it's encased in water and it goes straight out and into the sewer. So there's no smell. You? Yeah, your poop

Scott Benner 50:51
adjacent? You're not really? Yeah. Well, that's a strong title for this episode. It really is. Oh, I just thought for certain your most of your day was spent like ah,

Grace 51:05
but no, it's just like, like, it's just like being on a big recliner. Like if you were just going to sit back and hang out on your phone and just relax. That's kind of like what it is, except for their stuff going on? How long does

Scott Benner 51:20
it take the process? How do you know when you're done? I guess clear water.

Grace 51:25
Yeah, pretty much clear water. It goes by time it's like on the average, it's like 35 minutes. And you can kind of see when it gets to the end because it'll change from like stool into little pieces of food like where the small intestine releases its food into the large colon. It's like little pieces of food because it hasn't turned into poop yet. And then the water can change color on some people too. Like instead of brown it'll be yellow green or kind of a yellowish green. And that's like the digestive enzymes and the bile that are fed through with the food and

Scott Benner 52:00
what was my next question? Has anything ever come out that surprised you Matchbox car.

Grace 52:06
There are stories. Now I haven't personally seen this. But their stories. So the the gentleman that invented the device that I use, told a story of two different people in their 40s. And that one of them passed a Barbie shoe and one passed a Lego that they had when they were kids. So I don't know where that would stick in you and like why would not show up in a colonoscopy or something unless they never had one. But that's that's the only stories that I've heard.

Scott Benner 52:37
All right. No chunks or anything. Um, so for people.

Grace 52:43
Nothing other than what would regularly come out.

Scott Benner 52:46
Nothing that comes out where you're like, wow. Nothing like that. No, okay.

Grace 52:51
It's just pretty normal.

Scott Benner 52:53
I got you. What if I know you're not a physician doing this? Right? Like so? No, absolutely not. Yeah. What if like, you see blood, you tell him like, Hey, I saw blood?

Grace 53:02
If I did, I would, I would stop it and refer them to their doctor, but I never have like, they have to fill out a questionnaire and all of that. And as far as they know, they have to be, you know, healthy and not have any complications.

Scott Benner 53:14
insurance doesn't cover this as a cash business. And it's good. Is it going well for you? Are you like? Like, are you like, wow, I'm glad I started this like not only for your own personal like sanity, but like financially? Is it going? Well?

Grace 53:28
It's okay, I just do it part time. And if I did it full time, maybe it'd be better, but it's fine. Yeah.

Scott Benner 53:34
out of your garage, though, right? Away hilarious. By the way, if you were like,

Grace 53:40
it just made me smart. They kind of do that sometimes. In Michigan, Michigan. Yeah, I've had some people in Michigan tell me there's this thing called a Woods method. And people get like a five gallon bucket like from Menards and put it on a big piece of board. And then the people lay like kind of on a massage table. And there's like, an enema tube and they just do it like, like that. And like my device is FDA cleared. But you know, their standards, we have to adhere to one stuff, but I guess people get desperate or people just do things on their own sometimes. And so that's the thing. The woods method you could look that up.

Scott Benner 54:21
I'm not drawn to do this very frequently. You hear on the Juicebox Podcast should be considered advice, medical or otherwise, please, always physician before making any changes to your healthcare plan or sticking anything in your butt. Like think that's really important to say. I think you're gonna be the first one to get to different. I'm gonna have to say but in your disclaimer when I when I edit this show. I want to say this right now. I don't know if any of this is a good idea. Okay. And Grace is lovely. But she can also be a kook I have no idea. Right grace?

Grace 54:54
Well, yeah, I can absolutely be me. I am.

Scott Benner 54:57
Yeah, I'm just saying I'm not telling you to put water in your mouth. But, but grace is just telling you what helped her. That's all I just need to be clear about that. Because it sounds insane. And at the same time, I can understand how it might be valuable except you're it really is. Your it's for when you're in a situation where you just don't have another answer. It's not like you can just keep ignoring it till your stomach explodes, or you have to do something.

Grace 55:22
So, but you're either doing it yourself. I mean, you know, if you get to a certain point, you're either doing it yourself or seeking out somebody to do it for you. Yeah. Because it has to it has to go somewhere. And you're not going to hear a lot of people talk about this, but I guarantee you, it's a it's a thing that people do more than I think it's a thing that people suffer with not being able to go that nobody talks about. Yeah. And it's, it's kind of a mortifying thing. Like, even if you're not, like at a place to get it done. But if even if you're at home alone, doing it, there's nothing more more more, more more terrifying than, like trying to get stuff out of you. Because you can't like there's no shame after you deal with that for a long period of time.

Scott Benner 56:09
Great. You're gonna get me to say something here that I hold on. Let me let me get myself ready for this. Metamucil has changed my life in the last couple of years. Yeah, okay. But it can't just be me because there's a Metamucil shortage right now.

Grace 56:28
Well, and I will tell you that sometimes that works. And then some people that are impacted by it makes it worse. Yeah, it can make it worse. Yeah, if things aren't moving, and then you put something in there like that. It can make it worse. And I've gotten in flux from both of them. I've done better off when I've had fiber and then I've like, shut down when I've had fiber. So

Scott Benner 56:47
Right. Yeah, I'm not saying I'm just so right here. I shouldn't say this to people because I don't want anybody to know the truth. But there's a Metamucil. You want the OG Metamucil was sugar, but no flavor. It's like, it works so much better than, like the orange stuff that they make or like the flavored stuff, it is not easy to learn how to drink the first couple times. It's tough, you know, because you're basically somebody basically took dried weeds and put it in a glass of water. And it liquefied long enough for you to get it down. Like seriously, if you put the stuff I use in water, mix it up, and don't knock it back immediately. If you wait 30 seconds. It starts to like gel. And like you know, it's Yeah, starts to take shape. Like so you need to get it in quick quick. Know what the spoon but oh, god that just turned my stomach. I can't believe that's the first thing that made me nauseous in this conversation. But because I know what it looks like, I guess. But like when you go to the stuff like even the orange stuff. It's different. Like it just isn't as good. It just and you can't buy it anywhere right

Grace 57:59
now. I did not know there was a shortage on that.

Scott Benner 58:03
And I'm saying I know COVID and all and you know, we a bunch of people went home and didn't come back to their jobs and stuff like that like that. I understand. But I'm telling you like something like that for there to be a shortage says to me that a lot of people buy it.

Grace 58:19
Well evidently sell it or unless unless they're having a shortage making it.

Scott Benner 58:23
Yeah, but still. Yeah, you know what I mean? Like, how much how many people have to buy Metamucil before you can't find better? And I'm talking about like, legit, like, like, you know, like they're selling it on like eBay like it's like the black market. Really? I wouldn't lie about something like this. I have no reason. You gotta like, I'm gonna tell you that. You can get a big jug of it for 19 bucks, usually. And I just usually order it from, you know, the guy that made the books, Jeff Bezos, right. I usually just get it from him. Does everybody remember that? Amazon started as a bookstore. Anyway. Oh, I

Grace 59:06
didn't run. I didn't know. Are you serious? Oh,

Scott Benner 59:09
I know everything. This is why the podcast is fantastic. Jeff Bezos Bezos, Bezos pieces, who cares? I don't really care. He started Amazon as a bookstore. The first thing Amazon killed was like Barnes and Noble

Unknown Speaker 59:25
really Yeah.

Scott Benner 59:28
And now it's a place I get Metamucil and other things like when I need a microphone I just go on in mean like what am I going to do? So So you go on there on there. Oh my god. What am I 57,000 years old? You go on there the internet the thing I went on the box and I told it

Grace 59:48
Amazon sound water come up my nose when you just didn't.

Scott Benner 59:51
Listen, water comes out all your holes. So let's not be surprised by that grace. So, you know, just now I thought I am funny

I don't even know if I'm funny. I just think my brain is working too quickly. So anyway, this this Metamucil unflavored, like, with sugar, you can't even find a listing for it right now and I know its course, with sugar unflavored that's the one that legit works, right? Like, you put it in. And the next time you go to the bathroom, these beautiful little poos, let's call them nerds, okay, or turn, whatever you wanna call them. I have a glistening sheath across them as if God wanted them to come out of your butt. Right? You just wait till you go. You wait till your body says I have to go to the bathroom. You go, okay body, and then you walk over to the bathroom. You seat yourself, and then this will happen. No, no big deal. It's over. That's it takes two seconds. I'm going to tell you right now, I've never done this. I promise you. But I'm not 100% Certain you have to wipe when it's over. Like that's how well it goes. Right? They just come like flying out. They're self contained. It almost looks like somebody packaged them for you so they could come out. Absolutely legit. It's, well,

Grace 1:01:14
if I can find it, maybe I'll never

Scott Benner 1:01:16
find it. Because I bought it up completely. You black market Metamucil. There's a very, I finally found, like the picture of it on the Amazon. I've been talking the whole time so that I could find the picture. So everything I just said I was making up while I was Googling, and there's no ability to purchase it right now. No price on it. My wife a trip in trying to prove that she she loves me because we've been married a long time. So I can't be certain you know what I mean? Right? I know, I know. Like, just be here because like the bills get paid. And she's like, Yeah, it's easy, you know, but um, but she has a like a thing set up on her phone. Every time it comes back into stock, she jumps on and buys me one. We are now overpaying for it by 100% to get it Oh. And that's 28 ounces used to be $19. Now 28 ounces is $40. And until you've pulled with it and food without it. You're not going to know how valuable it is like she I'm very cheap grace, I think that comes across on the podcast. Like I'm incredibly, like, I hate spending money in a way that's hard to put into words. You know, like I'm wearing a t shirt now that I think is from the 70s. And so she gets embedded than he was I found a Metamucil for you. I ordered it. I was like, Oh, she was the only one I got an alert. And I jumped right on. And she I was like, thank you. When will it be here? And she told me the date. And then we you know, kind of went back to our business. And then she goes, You didn't ask how much it costs? And I said I don't care. Oh, yeah, I was like, I don't I don't I honestly don't care what you paid for it. Like if you if you sold one of the children to get it. I mean, maybe I'd start getting concerned around there. But if you could have got a case for it for like Arden, I would have made the swap easily. It just, you know, like it's that it became that important in my life. And I don't know what's up with my system, you know, or how I eat or how I don't eat or whatever. I mean, let me be honest, I had a vegetable once in the 80s. Okay, right. So I don't eat a lot of vegetables. And I realized I could, you know, I could probably help that. You know that way, but I don't have it in me. I'm like a 12 year old I eat like a child. So I don't I don't want I don't want your damn vegetables. I don't know why. I might say I was like they have a roach. I'm literally a child in my mind. I don't like the way vegetables feel in my mouth.

Grace 1:03:44
Yeah, I heard you say that.

Scott Benner 1:03:46
I'm not kidding about it. Grace. I didn't just say it to be funny. At Green Bean makes you feel like you've just grabbed my uvula. And like pulling on it. You're like vomit vomit now vomit. It's a green bean, you know? So, I mean, I can cook them. I'm happy to make them for people. I'm not bothered by them. I don't care about the smell. Submitted I go in my mouth. I'm like that I make the noise that I assume you make when you work. They

Grace 1:04:16
probably did it Mike or somebody try to talk you into yeah brussel sprouts or something

Scott Benner 1:04:24
that he didn't send me the recipe. Oh, you know where he's at right now. He's on a he's taken to Texas. He went down to Texas. He's driving around to hit the top 50 barbecue joints in Texas.

Grace 1:04:36
I know. I saw that like last night. I was like in that a tray. You

Scott Benner 1:04:39
better get some brussel sprouts too or

hey this is what the podcast is coming through. We're now shouting people out directly, just one person at a time. But no, seriously, I what I'm trying to say is I know how important it is to go to the bathroom. I clearly don't have any of your problems. And just the loss of Metamucil. In my life, like, I mean, you should have saw me. I was in like, I was in the kitchen. And I was like, Oh, I'm out of Metamucil. I didn't know that happened. And, you know, I've only got a couple more spoonfuls left. And I just like, you know, like a spoiled person. I just pull out my Amazon app, and I go to order it. And it's like, they don't have it. And I'm like, no, no, wait, we wait. Yeah, that's gotta be wrong. And then I just drove immediately to Walgreens, and then to CVS and then the Rite Aid and then I just started driving down the street to different and I it nowhere.

Unknown Speaker 1:05:32
Just that trip, man. Yeah, it's a trip

Scott Benner 1:05:35
trip and me right up on the toilet. It's what it's doing. So yeah, I mean, it's just that I know how important it can be. And I don't have all the medical problems you're talking about. So I have a really hard time even imagining what's happening to you. It sounds terrible. Like, I'm not gonna lie to you like it's a sad story.

Grace 1:05:51
Like it's hard. It's, it's, it's a horrible way to live. I mean, it's better now. And thankfully, I found stuff that helped out but you know, yeah,

Scott Benner 1:05:59
good for you. But well, wait a fight for yourself, because you could have given up a number of different times. Oh, yeah. Is there anything we didn't talk about that you wanted to talk about?

Grace 1:06:11
I don't really, I don't really think so. I think that we kind of covered everything and probably more than I even intended to cover, right?

Scott Benner 1:06:20
Listen, you should be covering those people's butts in.

Grace 1:06:23
Hey, they're covered. They got a lovely drape. It's sky blue. Is that disposable? That's right. Oh, abs everything's. I gotcha. Could you imagine if that stuff I could think back in the day that it they used to have to like autoclave it, like dental instruments and stuff because everything had to be sterilized right before it was plastic,

Scott Benner 1:06:43
you know, I'm saying disposable. Like, secondhand too, but my but right? That seems wrong. Did you claim I remember getting a tattoo and I was like, you clean that, right? It's like, Yeah, I'm like, and I'm looking at him. Like, he looks high. Like, I trust this guy.

Grace 1:07:03
I feel like a lot of them look like that.

Scott Benner 1:07:06
I'll tell you a beautiful tattoo. But you know, she drank vodka through the entire thing. And there's a moment where you're like, I'm making a poor decision right now. I know.

Grace 1:07:14
Right? Exactly. A permanent one or semi permanent. I guess you know,

Scott Benner 1:07:18
the only thing I really I thought this was great. The only I'm a little disappointed you were getting ready to talk about how terrific I was. And I cut you off. And now I'm regretting that part. Oh,

Grace 1:07:28
well, you are terrific.

Scott Benner 1:07:29
I'm just teasing.

Grace 1:07:33
I can expand on it. I don't know.

Scott Benner 1:07:35
You're really your your joy online. So thank you. Oh, well, thank

Grace 1:07:39
you. Yeah,

Scott Benner 1:07:40
no kidding. You really you add something to the to the site. It's it's hard to put into words. But there are people that come to mind when I think about that. That are and you're one of them. So I you have great enthusiasm, like you'll like like, we'll post something in the middle of the night. It's like a five year old episode. And like this episode, so good.

Grace 1:08:02
They're also good. I just, I don't know, they didn't get me excited. And they keep me. I'm glad to keep me wanting to keep I mean, I want to go for it anyways, because I want to be healthy. And I'm 58. And if there's complications, I don't like have time to play around. Right. But it's, it's wonderful. How did

Scott Benner 1:08:21
you? I appreciate that. How did you think this episode went? Do you think somebody will like this one?

Grace 1:08:27
Well, somebody out there might, you know, you never know, because it's such a private thing. You know, you never know who's dealing with what so I just figured I'd put it out there and say a couple of things that helped me in case somebody else is suffering because it's a real quiet thing. It's, it's like such a private thing. Like even for my business. To get somebody to put a review up, like five star, nobody, I mean, unless they're like, you know, like, this is their health thing in life or whatever, you know, like they're like super clean, healthy eater, but uh, you know, I do this just because, but for people that are sick and stuff, they don't even want to click like a five star button or whatever, because they don't want their name associated with the fact that they had this done like that. Anybody that now

Scott Benner 1:09:15
I hadn't considered that, but I'll tell you is a person who who has a podcast with like, you know, four and a half million downloads, and only 1000 reviews, but, but in email in private emails, like there are people who will say this, and you should question all of them. You should question me when I say it too. But I mean, I hear from 10 people a day. And at some point in hearing from them, the the concept of you've saved my life comes up in like some wording or another and it took me seven years to get 1000 reviews for my podcast. Really? Yeah, it's not some it's so it's hard for people to do in general is what I'm saying. Like forget that. It's about they can't poo You know what I mean? And I'm now you're making me wonder how many people don't want people to know that they have diabetes? And what?

Grace 1:10:06
Well, I don't know that it's that Scott because it's like, you know, twice a day I hear, you know, on the podcast and, you know, leave a review, whatever, right? It took me a year, I didn't find out till last week, how to leave a review on iTunes,

Scott Benner 1:10:24
and nobody anymore.

Grace 1:10:28
I know. That's why I got it. And I was like, I got an Apple phone because it works better with all the, you know, the Omnipod, and the dex and all of that. And I was like, it also works better with iTunes, because we can't get on iTunes with an Android. Right? And so I got on there. And I'm like, well, where's iTunes? Like, there's a place for it, you know, and I put it in the podcast, and it just came up like on an Apple app. And I was like, now I'm all confused. I don't know how to leave a review. I don't know what's going on. Yeah.

Scott Benner 1:10:53
On an iPhone, you just people problems gonna say you sound like you're 1000 years old, right? Just stop touching the buttons and listen to me, grandma. Okay, so it's Apple podcast is the native app that's on iPhones. Yeah, it's a real good app. And it's a solid way to listen to a podcast. So you open that up and searched for the show and follow the show. They used to call it subscribe. It also doesn't help that they change the wording all the time used to be No, subscribe. Now it's follow. And you follow the show? And then I think you scroll down and you can read it.

Grace 1:11:24
But like, yeah, I just yeah, just finally found that. Yeah.

Scott Benner 1:11:28
And it's fine. Like, look, I'm not gonna lie to you. Like, if you don't like the show. I mean, don't read it, please. Like. But, I mean, that would be weird. I mean, there's plenty of things that I've tried that I don't like, and I don't spend time running around making sure people know, I didn't like it. It I think that's a specifically strange decision to make. But whatever, you know, it's fine. I always just say to people, like, if you like the show, and you can say something about it, that you think will help other people want to listen, right? They can, you know, have the same experience, like leave a review. And you know, and then the truth is that I have that I get to use the reviews. It's like social media posts. And, you know, because I mean, or, or the other benefit is when people go to the app, and they're trying to make that decision, like, should I listen to this, they're going to scroll and look at the reviews. You know,

Grace 1:12:15
I'm really shocked that you said you have what around 1000? Yes, shocks me,

Scott Benner 1:12:19
it will sell well, it's not that easy to I actually, it's a really big number, like I'm proud of it. It's just it's hard to get people to like even like as an example, right? The What can I say? As an example here? Oh, okay. All right. T one day exchange. It's a great example, right? There's this short survey, if you're from the US, and you have type one year from the US and you're the caregiver, or someone from type one, you can take this survey in less than 10 minutes, that really is beneficial for people living with type one diabetes, and it'll help the show like, like, no, like, let me just be clear, I will get money if you complete the survey, right? And people are always like, the PAC is so valuable. So I mentioned it, and I have to generate four clicks to that link, just to get one person to finish the survey. And so and that's a good number. Like if you talk to people who do that kind of business, one in four, like, like a one in four completion rate is, is insane. It's a really great number. But that's how hard it is to get people to do things. And I understand it, too. I mean, there's things I supposed to do yesterday, I didn't do either, like I'm not coming down on people for it. I'm just saying it's the nature of, of the situation. So yeah, you having trouble getting a review, I think is normal, and then compounded by, like you said to people probably don't want to be associated with it.

Grace 1:13:50
Right? You know, that's private thing,

Scott Benner 1:13:52
which is a shame a little bit too. It's the same reason. I have so much trouble getting Type Two diabetics on the show. I think it type twos are not very public about diabetes. It's interesting, if you think about it, like there's a vibrant community around type one diabetes, but it doesn't exist around type two. And those people could help each other so easily. But you can't get them to talk.

Grace 1:14:15
It doesn't exist. I made a post about this one time, but I feel like it doesn't exist around type two, because they're such How do I put this, there's such an emphasis on there's a negative connotation that they brought it on themselves. And that even if the people don't internalize it kind of a shameful or whatever, it's like it's put on them. And like for me, something happened in my beta cells a long time ago. And you know, over time, and I see that a lot of times that that's where it starts for type twos is that there's some kind of beta cell issue that they're not functioning normally or whatever. And everybody just, like puts it on it that it's your fault, you got diabetes, because you ate a Snickers bar, you got diabetes, because you gained whatever amount of weight or there's something physically going on inside the body. Right? You know, and

Scott Benner 1:15:21
shame because you're right, because I'm guessing that the fear is that people are gonna think I did this to myself, I'm a slob I'm, you know, they're gonna think I'm overweight, they're gonna think all the things that people think when you hear type two diabetes, right? Like the things that people that pop into people's minds. I'm not saying that they're right, I'm just saying that that's what happens. And you don't want to be associated with that. And so you keep it to yourself. Right? And but the problem is, is that by keeping it to yourself, you don't let the information get out, that could help you really manage better Live better avoid things that you're dealing with now, you know, etc, etc. So

Grace 1:15:56
well, the other part of that, though, is that we're not taught any type of management, we're not taught how to make it better other than go home and eat right, like, I wasn't allowed to test my blood sugar. So they would give me enough strips. For one time a day, I could test and you weren't allowed to test more than that. And I had to fight with my insurance to be able to be tested to be able to test four times a day. If you're testing one time a day, you don't know what's going on with you. You don't know how to manage anything. Nobody talks about CGM. So I mean, that's just now becoming a thing for type two is like being aware of what's going on. Like we weren't allowed access to our bodies to know what is going on. So how are we supposed to do anything about it. And to that end, I have a friend that is a patient of the VA. And he's a type two, he is only permitted to test with one strip one time a week, and that's how they manage type two.

Scott Benner 1:17:02
i He's in the eights, that's terrible. It does some times strike me that the like, just what you just said, like, the biggest obstacle with helping people with type two diabetes is, is that if they have an eating schedule for their life, that's, that's not valuable for their health, just saying to somebody eat better, and get out of here. Like if they could just eat better magically, I think they would have done it on their own already, they wouldn't have waited to have diabetes, you know what I mean? Like, so if that's really the person's problem, like, right, and you just saying it to them doesn't fit. It doesn't matter if it's even the eating, like no matter what it is that people have built up. I don't know what to call it. Like, there's, there's just the way their life works, right? It's a rhythm, it's how it goes. Maybe they have trouble separating themselves from sugar or whatever they're, you know, they can't stop smoking, like, you know what I mean? Like, you don't mean like looking at a smoker and just going, Hey, you're gonna get lung cancer stopped smoking? Well, they go home and they go, I don't have lung cancer yet. So maybe it won't happen, and I'm not gonna stop smoking. And then they'll get lung cancer, like I literally have lung cancer might as well keep smoking like it's a it's the way people's minds tend to work. And then the medical community, knowing full well, you're not going to stop smoking when they tell you to says stop smoking, and then that they act like that absolves them. Yeah, I mean, like, well, I've done my part, I told the guy not to smoke. Well, yeah. But everyone knows not to smoke man, like no one, you know, it doesn't help anybody. You know, I wonder if I wonder if the thing that doesn't help type ones is that the immediacy of a bad outcome exists? It's not it's not take care of your type one diabetes, or maybe you'll get lung cancer, or maybe your type two diabetes will progress to blah, blah, blah, it's, Hey, you're gonna take care of this right now? Or three days from now you're going to be in a coma? Right? Yeah. Maybe that's the only thing that that that pushes people past their human? I don't know.

Grace 1:19:05
And it begs the question for the type twos beings, they don't, they tend not to test for them extensively, you're not allowed to see you're not allowed to see a picture of what's going on, like you're with type one. So you're not allowed to see what's going on through blood sugar, you're not allowed to see any trends. It's just, you know, pop in here twice a year and will tell you, quote, unquote, if you're good or bad, and not all type twos are overweight, and not all type twos eat like crap. And so it's like, how many type twos are misdiagnosed. And, you know, we see this all the time in the type one community because they're not allowed to even see what's going on with them in any way, shape or form. You know, and then they're blamed for it.

Scott Benner 1:19:55
I completely agree. You are making a lot of sense. I, Mike, I can't say enough. I think you're terrific. I I appreciate you having this long winding and confusing Lee. I have no I've never once thought of having hydrotherapy but now I'm like, I would probably try it once just to try it. Just to see what's up and see what happens. Like it. You see what comes out, right?

Grace 1:20:21
i Oh, yeah. And you can't see it too. Yeah.

Scott Benner 1:20:24
I also, I think, I think a lot recently about like, my, my gut biome, you know, and if I shouldn't, like, we just had it tested for our kids. And they're both taking, like, supplements right now to adjust their, their gut health. Like, each of them had a different kind of thing. So that's, yeah, so they're taking it now. I don't know enough about it yet to speak about it, you know, thoughtfully on here yet, but art is taking something right now that literally is like, I think it's smashed up poo in a capitalist. And, and she's like, she's so funny. She's just like, she said, in the jar, when they're all when all the all the capsules are together. It let me just be clear grace. It's and I was like, well, there you go. You take one out, it just smells like she goes, You know, it's funny. Together. They smell like, but when you just get one of them. It just smells like bad cheese. That's what she said.

Grace 1:21:25
That's hilarious. Just like, just like took a breath. When you said bad cheese. I was like, Oh,

Scott Benner 1:21:32
she's like, I can get that down, no problem. And that she takes no trouble at all. And she only has to do it for like 60 days or something like that. To try to make a change. Like like we're trying to figure out if she has like leaky gut, like she has acne that we can't impact for some reason. Right? Right. And and, and we did this through Addy through Dr. Benito. She sent out their samples getting the kids to get stool samples was hilarious. And that it was they weren't they weren't excited to do that.

Grace 1:22:03
That's funny. So they

Scott Benner 1:22:05
did that. And then they both got their reports back. Kohl's was Kohl's, I think there's like two things. Kohl's, like, you know, pop in once a day. And Arden's taking three. And that's, that's it when I said we're going to try it for 60 days and see if things that they've had complaints about in the past. Clear. It's worth it. That's fascinating.

Grace 1:22:24
I'd like to hear the results of that. She's that doctor is just she's really saying

Scott Benner 1:22:30
I think I'm going to do it myself so that I can talk about on the podcast better. Right, you know, because then because I know how my body works. So I'll be able to thoughtfully say like, this is what was happening before I did this thing. Here's what they told me. I did the treatment. Here's what happened afterwards whether something worked or not. Right, so I think I'm gonna do it like next year, like in the in the new year. Not around Christmas. I don't poop on cardboard at Christmastime.

Grace 1:22:56
No, that wouldn't be so hard. It would be the most festive thing to do.

Scott Benner 1:23:00
The hard and fast rule for me. Great. All right, well, I really appreciate you doing this. I thank you so much for coming on the show.

Grace 1:23:08
Oh, you're very welcome.

Scott Benner 1:23:18
A huge thanks to Ian pen from Medtronic, diabetes and Dexcom for sponsoring this episode of The Juicebox Podcast. Don't forget that you can go to in pen today.com to check out the pen and dexcom.com forward slash juice box to see about that free 10 day trial of the Dexcom G six oh what if you're eligible go looky looky I also want to remind you to go to T one D exchange.org. Forward slash juice box, take the survey. And of course, I want to thank grace for sharing her story. And if you wait till after the music, I'm going to tell you what Grace has learned about her health

head over to the place where I met grace, the Juicebox Podcast Facebook page Juicebox Podcast type one diabetes. Okay, here's my update from grace. I want to thank Isabel who also helps me with the Facebook page. She got this information for me from Grace yesterday because I was not feeling well. And I wasn't up to it. As of last week, Grace's diagnosis of gastroparesis, endometriosis, abdominal adhesions, all stand a new addition last month, she has epi exocrine pancreatic insufficiency. And this is the big one. I would do a little drumroll here, but I gotta be honest with you. It's very late and I'm not up for it. Grace is type two diagnosis has been changed to type one diabetes. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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