#644 Defining Thyroid: Proper Dosing

Scott and Jenny Smith define thyroid terms.

In this Defining Thyroid episode, Scott and Jenny explain how to take your thyroid meds.

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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 644 of the Juicebox Podcast.

Before I start the last episode of the defining thyroid series, like to take a moment to thank you for your support of the podcast makes these little side endeavors possible. What I mean by that is that I couldn't do 123456789 episode series about thyroid. If you guys weren't going to support it, by downloading it and listening to it, it would be hard for me to tell the advertisers I'm going to put a bunch of content in nobody's going to listen to it. So I appreciate you guys clicking and downloading and subscribing, you allow me to do things like this defining thyroid series. Today is the last episode in this series so far unless I think of something in the future. But today's topic is about how to take the medication. And it's a bit of a wrap up too. But taking your thyroid medication is not as easy as just popping it in your mouth. There are some things you need to know. If you take these medications incorrectly, they don't work. So settle in. Listen to Jenny and I go over how to take your thyroid meds, and the reasons why I think you'll find them interesting. Speaking of great sponsors of the podcast, this episode of The Juicebox Podcast is sponsored by the Dexcom, G six, continuous glucose monitor, head over to dexcom.com Ford slash juice box and say hello to Dexcom. Alright, Jenny, we've learned that we have hyper or hypothyroidism, and we're going to start taking medication. Somehow we've gotten lucky and found a doctor who understands it. Thank goodness, we're on our way. But it's not that easy. It is a little tiny pill, you have to take it once a day. But there are a lot of things you can't take the pill with. And there are timing issues about how to take it. So how would you? How would you describe to somebody to take their thyroid medication?

Jennifer Smith, CDE 2:27
It would be good. A good long discussion in terms of I would first ask how are you taking it? And what are you aware of in terms of your intake around that medication? Timing and everything. And a lot of people like I said before, a lot of people are probably doing the really like the very basic that their doctor has said which is don't take it with other pills or supplements. Take it first thing in the morning and take it at least an hour before you eat anything else. That's that's like the general idea of taking your taking your thyroid medications, specifically like the level thyroxin or Synthroid or the the typical names that are what most people are using. Yeah,

Scott Benner 3:14
same time of day every day. I guess most people say the morning because their stomachs empty. Right? Right, Arden takes hers at the end of the day, like before.

Jennifer Smith, CDE 3:26
And if she's not taking any other supplements at the end of the day, and it's well past her dinner time, then for some people, that is another really good time of day to take it. Because they don't have time to wait in the morning time. They don't have that like either they're not going to get up in enough time before they have to leave or go to school or whatever is on their docket for the day. But yes, same time of day is really, really important. And then the other things that, you know, we'll talk about as, as we discussed, will give you a good idea that the time taking it is probably not the it's not the best idea at all. So same time of day. Definitely. I think another one is and this would come from your doctor if you found the type or meaning like the brand that works for you. Make sure that your doctor is always writing on your prescription no substitutions. Yeah. Because I know myself like I've been changed from my typical like, human log branded insulin to the generic human log, which is made by the same company it's just not called human log on the label any longer. Right. And that was my insurances, you know, decision to go to the generic. Um, I have found no issue with that at all. It works exactly the same as my name branded homolog worked so fine and dandy, but for something like thyroid medication it's a really it's something I've heard many people say I tried This substitution it did not work for me. So just have your doctor write no substitutions on the prescription Yeah,

Scott Benner 5:07
the compounding of the medication especially when you're taking Levo thyroxin which is the which is the medication name, but you'll see it as brand names like Synthroid Yuna, thyroid, Tierra sin levoxyl. So those compounds things are really specific, like, correct. I've I saw, my wife was just cruising along on Synthroid, and the same thing happened that you're saying, like, one day, it just got substituted for the generic. And yeah, no one noticed, you know, like, no one noticed. And then suddenly, weeks later, my wife was like having problems. And then you don't, you don't mean like you don't, it takes a long time to figure out again, now you figured out this issue for yourself, you're cruising along, and then someone just doesn't write no substitutions. And just like that, you're having a problem you can't even figure out. So Synthroid is taken by my wife Arden used to take Synthroid, but in the, you know, we were trying to find reasons why she might be having other problems and, you know, we're down to like maybe she's having a drug interaction, which it wasn't but she's switched to tears. And at that point tears since actually, it's not a pill like, like Synthroid to drive like compounded pill. It's here since a liquid inside of gel cap. Oh, interesting. Yeah. And because she had good success on it when my son started something they just gave him to listen to because it worked for her and that was the idea. Other medications that you might be taking, if you have hypothyroidism is a word I can't say low thyroid mean, it doesn't matter. It's cite a military sentence A T three mm in synthetic form. My wife had a ton of success with cider mill until it started giving her palpitations. Like one night, I swear one night we were sitting in bed and she's like, I'm having a heart attack. Something's going I remember

Jennifer Smith, CDE 7:08
you telling me I think we talked like the next day or something. You mentioned that she's like,

Scott Benner 7:13
she grabbed a there's an Apple Watch in the house that basically nobody uses it's mine. But my eyes went I can't see it anymore. I don't like just looking at my wrist going. I wish I could see this. So we it was charged up we put it on her and used it for it has like a little EKG thing on it and everything. Sure she was actually in. Oh, gosh. So I think so whatever that thing measures? I'll find out. I'll put it in here. But we were like, like, are we going to the hospital kind of thing. Like it was like right along there. You're very worried. And then she removed the cider mill. And it just went away. Interesting. You told her endo and and then there's like, take this item away. Now the problem was she was getting a lot of benefit from the side of metal. So you know, there was something to do there my son takes. So my son sees Dr. Benito. And she's a little more of a integrative doctor, I guess. I don't know what

Jennifer Smith, CDE 8:15
he looks at everything. And she pays attention to everything that might impact. Yeah,

Scott Benner 8:19
yes. So my son actually takes a mix of terrassen and armor thyroid. So then the third kind of thyroid medication you might see is a more natural version. Armor I think is made from glands of a pig, right? Dry thyroid glands have a pig. And I think there's another brand name, nature thyroid to or nature throw, I forget how they say it. Okay, it might be the generic of it. So my son takes up blending of terrassen. And a very small amount of armor seems to be working really well for him. But

Jennifer Smith, CDE 8:52
and again, what you're emphasizing is just really making sure that you know, how you've been doing on what you've been using, and continue to use it and make sure that it even if you change doctors, which does happen, right plans change things change doctors leave practices, that you really just have them have a definite list of this is what I was using, and even like symptoms and things like your wife, I can't use this, I had to switch to this because these were the problems that I experienced. So keeping some really good notes about what is working, what doesn't work, what you've tried. And kind of even the doses that you know, you find that definitely work for you. And then you know in terms of medications, especially around taking, you know, just the first step is the timing of when you take your thyroid medications. I mean, talking just about medications, you have to also really be good about knowing which other meds you're taking, that might interact with the thyroid medication in a way that you don't want and And there are, I mean, there are a host of other meds that can change the way that your thyroid med gets absorbed. And then your thyroid meds because you're taking these other medications may need specific adjustments based on how these other meds are helping you as well. So it becomes really important to pay attention. I mean, the the list is extensive i There's antidepressants, and there are the blood thinners and some of the statins, even some of the birth control pills, some of them oral medications for diabetes, reflux, anti acid types of medication, I mean, again, yeah, many that you need to pay attention

Scott Benner 10:44
to, like you said things that you might be taking already, because you have type one, like for instance, an iron supplement or a multivitamin with an iron supplement. Same with calcium, calcium supplements or multivitamins, with calcium supplements, if you took those as the same time as your Synthroid or tiersen, it would just block the uptake of it. And now you're going through the effort of taking this pill anyway. And sort of like what we were talking about with my wife when when she got switched to generic and nobody knew you're going to start having problems and you're not going to know why. Because your brains not gonna say to you like, oh, it's the thyroid pill because in your mind, you take that every day you're doing it right, you know, right, right. So, so to me, thyroid is getting it diagnosed. And then finding a doctor who understands it, who will do the right blood work and mess with your levels. Somebody who's going to treat your symptoms and not your lab results, and then direct you properly about how to take the medication because you're going to go through all these steps and then take the meds wrong. And that is such a prevalent complaint online, which it is, which is about my thyroid meds don't work. But yeah, it could be something stupid, like, like, did you know if you take an acid, like even over the counter and acid I'm saying Did you know Jenny's gonna know this, but maybe I don't know. It blocks iron absorption? Oh, yeah, yeah, so people who have low iron but are taking in acid they don't realize that and then you could take your iron supplement at the same time as you take your an acid and then you might as well just flush the iron supplement down the toilet instead.

Jennifer Smith, CDE 12:21
You know, if you think about Summit, some people take some other meds with like their Frappuccino or their iced mocha.

Scott Benner 12:39
I know it's not fair to put the ad here because you're thinking I drink iced mocha, which I MP doing that now. You'll find out in a second when Jenny finishes her thought. But I need you for a moment to focus focus focus on the Dexcom G six continuous glucose monitor. I'm going to tell you a story from this week in our house. Arden had to go on a steroid pack for six days, I believe this steroid pack monkeyed with her blood sugar pretty bad at times are needed. For units of Basal an hour, I was able to use the information that I got back from Ardens Dexcom G six to make quick and accurate adjustments so that she didn't suffer for days upon days. After starting the steroid pack, we were able to get things dialed in about eight hours. And then as the pack tied traits away, she gets fewer steroids as the days go on. The impact on her blood sugar changed, and we were able to change with it. Now tonight as the steroids disappeared from our system. We also had to change a pod and then go right into a meal. Well, we Bolus pretty good. I'd say aggressively for the meal. And about 45 minutes after the Bolus, it was clear that Arden had too much insulin. It was not a problem because of the Dexcom it immediately showed Arden's blood sugar dropping. It showed us the arrows that indicated a fast drop. It made alarms so that we couldn't ignore it. And Arden was able to take in some food without rushing and she avoided a low blood sugar. Her blood sugar kind of stopped right around 69 held held held the food kicked in. And right now she's 111 Without a Dexcom G six continuous glucose monitor. What I'm gonna guess would have happened instead would have been that we would not have had the nerve to be aggressive at dinner. And instead of a drop, Arden probably would have seen a significant rise in her blood sugar based on what she ate. I'm guessing that we would have then fought with for many hours this evening. Because we would just be testing randomly to see where she was. But with the Dexcom you're seeing her blood sugar in real time, now, okay, Fair's fair, we used a little too much insulin. But it was never a problem. Never a panic situation, because Dexcom was right there to say BBB, your blood sugar is getting low. And we were able to react calmly, rationally with a measured amount of carbohydrates and stop her low before it ever happened. kind of magical. Trust me, I raised the child without CGM, and I've raised one with them. I prefer this way. dexcom.com Ford slash juicebox. These are our results. And yours may vary. But there's nothing better than seeing it live. It really gives you a chance. There are links in the show notes of your podcast player to Dexcom. And all the sponsors. There's links at Juicebox Podcast COMM But you can always just go to a browser and type dexcom.com forward slash juicebox This is a piece of technology you want on your side, go check out the website. And when you try to leave it, it's going to give you a little pop up banner that says hello ducks calm, that's your opportunity to maybe get a free 10 day trial, give it a whirl.

Jennifer Smith, CDE 16:35
In the morning time, okay, that might be great and fine for other medications. But for thyroid medications, things like fiber, and caffeine, caffeine and even some of the macro micronutrients, just in food, which is why we recommend not taking it along with food and just with water is because it can really impair the absorption, again, of the dose of thyroid medication that you're supposed to be getting. So don't take it with your caffeine in the morning. Just take a glass of water,

Scott Benner 17:07
plenty of plenty of distance between them. If if you are taking an iron supplement, and thyroid ours, like you're gonna have to make a plan. And then that becomes an issue for people to you know, making a plan.

Jennifer Smith, CDE 17:22
And one interesting thing, especially in terms of diabetes, and a lot of the change that we've seen in just fueling plans, right, I hate the word diet. But the way that people choose to eat with diabetes to manage their blood sugar's better, you might be going from a typical, you know, diet to more high fat, or maybe you're going the complete opposite. And now you're just doing an all vegan, very low fat type of diet. Well, if you had been eating really high fat, and you go to a really low fat eating plan, you may actually need to change your dose of thyroid medication, it the dose might actually be too high. If you had gone from really high fat eating to really low fat eating, you might have to adjust your doses. So I you know, all those kinds of things. These, these are not on the printout list of how to take your thyroid meds when the doctor tells you the the majority of time what I hear. When I ask people how they're taking it is I take it first thing in the morning and then I wait to eat until I get to the office which is like an hour later because that's what the doctor told me to do. Just give it an hour. Well. Another one that often comes up on the list too, if you're really looking how to properly take it is foods that are high in calcium, calcium can impair the absorption of their thyroid meds. And actually the timeframe from calcium intake to taking your thyroid med is much longer than an hour. It's like you're supposed to wait like three to four hours.

Scott Benner 19:03
You know? Because if you're not getting the absorption, then you're not getting the medication and you really do need it. Listen, there's a great example Arden's been applying to colleges, right. She's done now, thank God, like my wife and I got in bed last night. We're like, Oh, like that was something, you know, just Yes. So Arden is applying to fashion schools. So she doesn't just apply. You know, it's not just an application. She's portfolios. Some schools want, like they were samples of things. They were making dresses in my house last week because of that, right? And so it's been a lot. She's got high school on top of this on top of everything else. She's been going to bed exhausted every night. And about, I don't know about four or five days ago. She comes by my office, she's going to bed she goes, Hey, I just realized I ran out a terrassen and I didn't go get it. And I was like when she goes I don't know like five days ago maybe. I was like Great. So. So we did, what we did was we did two terrorists and that night, and then we did two terrorists and the next night, and then we went back to a regular thing, because that is the other thing. If you miss it one night, just take to the next day is definitely that's how it's been explained to us. My doctor even told Arden, if you go away for the weekend and come back and go, Oh, I didn't bring it with me. She's like, just take it all.

Jennifer Smith, CDE 20:26
Oh, interesting. Yeah. And again, that would be something definitely to go over with your doctor of the what if this? What do I do? Because again, Arden's dose may be very specific to that works really well to double up the next day after you missed it the day before for somebody else, that might not be the case,

Scott Benner 20:43
it also brings up the problem is that some people then might think to skip it for seven days and take seven of them, which is not going to work. And I'm not saying that you should make a plan around skipping your medication. But if you do it, there's kind of a way to catch back up again. But the point is, is that yesterday, yesterday, about three days after she told me this happened, and probably about seven days after she stopped taking it. She was exhausted. And she's like, she's like, I can't I'm so tired. And I was like, Yo, you didn't take your thyroid medication for free. It's got to play catch up. And then finally, it caught up to you. And I said, your this is why it's important to know I'm trying to explain to a kid who's been taking thyroid medicine since she was little, she just thinks it's part of her life. She doesn't even I don't even think half the time knows what the hell it's for. You know? Yeah. So yeah, anyway, it's really important. You don't have to live like that. And if you're taking that medication, and it's not helping, there, there should be a mixture of amounts or T three and T four arm or whatever, that a doctor can get you to that will really help you you shouldn't have to struggle with this. So right, you know, exactly. Alright. Well, that's my passion project Jenni, thyroid disorder.

Jennifer Smith, CDE 21:55
Awesome.

Scott Benner 21:56
I think I think we've covered a lot. We I think we're done actually,

Jennifer Smith, CDE 22:00
we done with our thyroid stuff.

Scott Benner 22:01
I think we got through it all. I hope people listen to this, and that they're just like,

Jennifer Smith, CDE 22:06
well actually, I've heard from a couple of people that I work with that they've enjoyed. Although they don't have or they already have and they knew enough but they just like the explanation a little bit better. I've heard a couple of people say that it's nice that we're delving into something related to type one but a side note of how to manage something that could also be impacting your diabetes management if you're not managing your thyroid stuff well to begin with, so

Scott Benner 22:39
I know we've gone over it over and again but let's just leave it here at the end of this episode if your thyroid is mismanaged or are not working properly, and you're not managing it at all that does impact your your insulin 100%

Jennifer Smith, CDE 22:53
Yes, your dose of insulin your glucose control your sensitivity everything is impacted if your thyroid is not well managed.

Scott Benner 23:02
I'll take I'll tell you to the other thing is that you know when you I think that one of the things that might be keeps people away from looking into this stuff is that they don't want there to be another thing wrong with them. Like I say it's psychological sometimes like they just like we just found out we have type one I don't want to find out about this next thing

Jennifer Smith, CDE 23:21
well you know, the funny thing about it is I mean I keep really good I feel like visual on all of my health parameters right? When I get things tested, my lab results come back. Even if the note to me is like all parameters are in Target. I look at all the parameters I don't just go by that note that says everything looks good. I look at each of them. Well, since we started like doing this thyroid stuff. I actually went back like I think it was like six years just to see what have my like thyroid checks look like over the past six years. How have they flocked How have they changed and quite honestly, I'm very thankful and I should knock on some piece of wood somewhere. I mean, they don't mind don't really change. But everybody is doing right Yay, it's doing thyroid right

Scott Benner 24:12
just keep doing it that's all like I do think there's a spot like with diabetes that you do get into you know, he just get into a rhythm you take the pill at the right time your your life kind of goes like that. Like I want people to understand like if you're you know if you're doing this well over and over again and one night you take your multivitamin and your thyroid medication at the same time. Like don't beat yourself up just go DX day, but you're doing it every day at the same time. You could you could be completely crap. Yeah, just just making the thyroid medication. Again, it might as well you might as well not even be taking it because you're blocking its absorption.

Jennifer Smith, CDE 24:50
The other one that comes to mind just briefly, because of everything we've had going on in the past couple of years. People have really tried to get enough Back stash of products and even medications. Make sure your thyroid medication is not expired. Make sure it's not expired, don't take expired, get new.

Scott Benner 25:19
We you needed to work like you need to do what it's supposed to do. I think we Yes, Jenny, I'm, I think it's cool. We're done. Yay for us. Yay for us. For us, like I, you know, I'm gonna tell you that I think we're gonna be doing this more with other things like I want to, I do want to talk about just iron specifically, you know, people's iron levels are generally not high enough. Vitamin D, maybe we're going to go down a little supplement trail at some point,

Jennifer Smith, CDE 25:48
what I think kind of a piece of that, as we've kind of already gotten into even with some of the thyroid discussion is really gut level absorption. And really, maybe doings I know people like more like, link to this, like research. Why is this the information that you're kind of, you know, telling us, there's a lot of good information about gut health, specific to autoimmune disorder, and very specific to type one. That leads to the reason that your daughter's doctor is like, hey, get rid of those oral supplements for vitamin D, you need to be taken it under your tongue, so it gets absorbed through your oral mucosa. It doesn't get absorbed. For many people with type one through the gut, it just doesn't

Scott Benner 26:38
know. So I'm looking into the right people to talk to about some of this stuff. I there's one doctor I'm considering I'm actually also considering contacting the company that we sent the gut testing off to, like maybe they've got a medical who did you because I

Jennifer Smith, CDE 26:53
did that to Cat it was probably four years ago. Because I think Conan was like, a year or so old. Maybe he was like 18 months, so it was probably about four ish years ago that I did it. I'm curious what company you guys used

Scott Benner 27:07
to have the information downstairs? I don't have it here at my desk. Okay, I'm not sure. But I that's what I'm trying to figure out. Like, who do you get, they can really talk about this stuff, right down deep.

Jennifer Smith, CDE 27:19
And isn't just like a fufu kind of like, Oh, we're doing this fancy. Like, send us your poop and like, give you you know, you shouldn't be eating broccoli anymore. And you know, I was, you know, how did you nail it down to broccoli? I didn't even have broccoli for the past week, so it wouldn't have been in my poop Where are you getting that

Scott Benner 27:43
from? I'd like to know I definitely do and understand it better as well. So okay, yeah. All right. Cool. Thank you. Awesome. Yeah

how about that Jenny Smith huh? Round of applause. I'm not gonna clap because it mess up your audio. But I mean, like, she's terrific. Jenny's for hire if you're interested, she works at integrated diabetes.com. I'd like to thank Dexcom very much for being a longtime sponsor of the Juicebox Podcast and remind you that you may be eligible for a free 10 day trial of the Dexcom G six, head over to dexcom.com Ford slash juice box and say hello Dexcom Thanks again for listening to my defining thyroid series. I hope you found it valuable. Please don't forget I ran right in that music there. owe me a drink. Please don't forget there's a fantastic episode at episode 413. It's called thyroid disease explained is with myself and Dr. Addy, Benito. She's terrific. And if you really really want to dig down deep and understand thyroid, it's a great place to to keep going. All right. You guys good? Did you like this episode 616 Defining thyroid hypothyroidism and Hashimotos thyroiditis episode 619. Defining thyroid pituitary and thyroid glands 624 TSH testing 628 T four and T three 632 auto immune 636 goitre 640 thyroiditis 641 Graves disease and of course this the last episode 644 I think I'm going to call this one I don't know I didn't really think about it till now. And I got me on the spot. I mean, defining thyroid Alright, let's think about the other defining thyroid taking your medicine know how to take the meds, how to take the meds. proper dosing. We got that I got it Defining thyroid proper dosing, Episode 644. I hope you've enjoyed it. Hope you've gotten something out of it. I've enjoyed bringing it to you. I'll be back very soon with another episode of The Juicebox Podcast. If you're enjoying the show, please share it with someone else who you think may enjoy it. And my goodness, if you're not already subscribed, subscribe. Subscribe in your favorite audio app, Apple podcasts, Spotify. I don't care which app you use, hit subscribe please helps the show immensely.

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#643 That Damn Cupcake

Jen is here to talk about celiac.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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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 643 of the Juicebox Podcast.

Today, I'll be speaking with Jen, she is the mother of a child with type one diabetes. That child also has celiac disease. A few weeks ago, Jen heard me on another show. And she didn't quite agree with what I was saying about celiac. And she reached out to try to help me understand better. When she did, I invited her to be on the program. And here she is today. I hope you'll enjoy the conversation as much as I did. Please remember while you're listening 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 healthcare plan, or becoming bold with insulin. If you're enjoying the Juicebox Podcast, please share it with someone else you think might also enjoy it. If you have type one diabetes, where you're their caregiver of someone with type one diabetes, and you're a US citizen, it would take you less than 10 minutes to join the T one D exchange registry, fill out the survey and help people with type one diabetes T one D exchange.org. Forward slash juicebox.

This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. It is the blood glucose meter that my daughter uses every day. It is the one that I like the best. And I'm talking about of all of the blood glucose meters that she's ever used. This is my favorite. And it is the blood glucose meter that I think you would also enjoy using contour next one.com forward slash juicebox you won't feel like you're moving around from it because that's the real problem with using the laptop is that if you get animated or look in another direction, the microphones not moving with your face. That's all

Jen 2:09
well you know what I thought that the headset was working for like voice and not whatever it's called sound so I moved away from it to talk but I'll move closer. So let me just set it up on this.

Scott Benner 2:24
That was great. I'm keeping that in what was that? You just knocked over

Jen 2:28
Mr. Potato Head Great.

Scott Benner 2:30
Mr. Potato. I was gonna guess an old can of baked beans that had been left out but I don't know. Something very tumbling.

Jen 2:40
Okay, there's a laser gun down here that just went off. So I'm just gonna go put that in the grim. Oh, so it doesn't go off during the interview

Scott Benner 3:03
don't think she means like a real laser gun. You don't have like access to real like, like space warfare, right? You're just like a toy? Yeah, that's fine. I had a lot of laser guns when my son was little. We used to have Jennifer, can we start with a silly story? Sure. Okay. So when I was a teen or a young adult, probably in that 1921 range, laser pointers, suddenly were available in the world had never been before these super strong things that would just shoot this red dot. I mean, so far away. And we got a hold of them. I am embarrassed to say that they were incredibly expensive back then, you know, it was some something that a person in my financial category should not have been buying. But we we ordered them online, they took forever to come. And then one night, we went up on the roof of my friend's house, which was across the street from a restaurant, a couple of shops at a bar. So this bar is on the corner. And after hours, the drunks came stumbling out of the bar. And we took the laser pointer and put it on the ground in front of them. And much like kittens. They we could make them wander up and down the street following the laser pointer. I never laughed so hard in my entire life, I believe or not. Yeah. My wife and I were just dating at the time, I think. And yeah, we weren't married that early. And she laughed so hard. She had to pee, but your decline back a window back through a window to get into the house because we were out on this flat roof and she struggled to get through and she's like, I'm gonna pee myself. And my friend just kept walking these these guys like back and fourth. You could hear them talking to it. Like what are you? It was the best 15 minutes of my life. So oh my gosh, it's really funny. Yeah, it was good time. Tell everybody your name

Jen 5:00
My name is Jen. And I'm the mom of a type one daughter, who also has celiac disease.

Scott Benner 5:08
And Jen, you are the first person, but I can't believe it's taking this long. Actually, you're the second person, one other person did about an insulin pump. But you're basically here to yell at me. And I'm here to take it, because I want to understand what it is that you are passionate about. So can I, I'm gonna lay out a little framework, you tell me if it strikes you right or not. I did an episode with a guy named Josh, like a year and a half ago, and it was called Josh has all the fields. Josh is a very emotional person, I believe he talked about having some depression and anxiety and things, you know, issues. He's the father of a kid with type one. He comes back on the show about a year later. And he's struggling now for other reasons. One of them is that his child has been diagnosed with celiac. I don't know anybody personally diagnosed with celiac, and I'm trying to talk it through with them. And in my heart, the way the conversations going, is that this guy is struggling mightily with things. And I'm trying to, I don't know what I'm trying to, I'm trying to talk to him about it. I'm trying to help him if I can. And during the course of the conversation, he reveals that he's very, he's burdened by the celiac diagnosis, and what it means to his child more specifically about the things that the child can't have any longer. And, and this guy is, I'm not going to sit, you know, he's not ready to jump off a building or anything like that. But he's really in some serious psychological and emotional turmoil. And in the course of the conversation says to me, that the kid doesn't actually have any symptoms from celiac. And at the same time, was lamenting that he couldn't go to a birthday party and have a cupcake or if I'm remembering it correctly. And so I said, How many birthday parties does this kid go to like thinking like, maybe they're, I don't know, like a birthday party over the weekend. And this is a big tragedy. And, you know, the kids missing a cupcake every third, Thursday, or something like that. And, and he says, well, not that many. And I just, I kind of flippantly answered, I was like, well just let him have a cupcake, then if he's not going to have any, like, problems with it. What I meant was, you know, I mean, I'm, what I was trying to get at was the guy was making himself crazy. And I thought I could alleviate one, one little part of it, then you got really mad at me and sent me a lot of messages. But you were very polite about it. And that is why you're on the show today to explain what it is. I didn't understand.

Jen 7:38
Yeah, well, I think that I wasn't necessarily as mad as I was, like, just wanting to inform you, because I knew how passionate you are about helping people with type one diabetes and managing, you know, your daughter's diagnosis with her. So I just knew that if you knew better that you wouldn't have said what you said. And that's what I was trying to help you out with their,

Scott Benner 8:01
you were very, actually enjoying, please, I know, you weren't like, ranting and raving, you were just you were lit up, like you you had found like, you would get very passionate, and you were clearly trying to help me as well. But you know, you know, should I have not said mad? Okay, here we go again, you know what's gonna happen? I'm gonna get a letter from someone else's. You tried to guess like, Jen, and that? They're gonna want to know, I don't know, I just meant, like, you were you were. I mean, you weren't. First of all, it's in writing. I think it brings up a good point. I don't know that we should write to each other. But But I was just sitting here working one night, and I started getting messages. And I was like, Wow, this, like, like, and it was the, you know, send a long, thoughtful note. And I'm like, I got to actually stop what I'm doing and read this to make sure I understand it. And, you know, maybe I was defensive when I got it first. But I don't think I came, I wasn't defensive in a way that I was like, leave me alone. Like, I just I, I, you felt good about how I responded, right?

Jen 9:03
Yeah, like the fact that you responded in the first place I was happy with, you know, because I could only imagine how many messages you could get from people potentially. But I think that I'm probably just a little bit touchy on the subject, because my daughter was just diagnosed in April. And she's had diabetes for five years now. And, you know, we really feel like that's under control. And I know that you like him to get to a spot that diabetes isn't like a hardship or a burden for your daughter, and you know, it's just kind of like something different they do in life. Like, that's what I tell my, like, my daughter, she she has Invisalign, and she has to take out her Invisalign. And I feel like it's just another step that she needs to do before she eats and we got into, you know, the process of just doing that. So it was something that I didn't have to think about that often. We've been lucky enough that she hasn't been really sick. You know, so when we got the celiac diagnosis, it was just like another thing so I you know, empathize with The person you're interviewing because it just feels like you're being shot, like, again. And you have to try to recover from it. But it's not. It's not socially, it's just a lot harder. And, you know, he had mentioned that there's not that many birthdays, but there really are a lot of birthdays. Like if you think of your class, and there's 20 kids in the class, and you're getting a birthday invite, like every five minutes, and it's not just about birthdays, but it's hard. What he was saying is, you know, my son doesn't have any symptoms. And he's, I don't know, he was like seven or nine years old, and he couldn't have something even though it had no effect on him. So that's hard to try to explain to a child. And then also just trying to make your child feel normal. That was always you know, something that I had made a high priority for my daughter was, you know, you could do anything that anyone else can do, we just have to plan a little better. And, you know, there's two things, I guess that she can't do, like, you know, be in the army or fly a plane or whatever. But besides that, it's not really something that was impeding her that much,

Scott Benner 10:55
right, actually think you can fly a plane now. Oh, you can't? Yeah, that changed in the last year and a half or so. You might even be able to fly commercial at this point. They're working towards it. I know. There's the jet. I think the guy that got like the first license ever was on here talking about it a while ago. No, yeah. But think back, give it back. Like, meanwhile, she's looking to fly a plane. But that's not neither here nor there. So, so to pick through what you thought we were talking about just now for a little bit. My daughter has two things. You know, like she had had diabetes for quite some time when we found out about hypothyroidism. I know exactly how you feel. Like, you know, that idea of like, how can there be another thing, we already got a thing? You know what I mean, like Fair's fair, give another thing to somebody else. Like, why? Why do we get to, and I remember being in a hotel room with my son, while he was playing baseball, and finding out over the phone, and I was distraught, like I left the room, so my son wouldn't see how upset I was. And it was just hearing about Ardens hypothyroidism, which now, moving forward is, you know, generally speaking, not such a big deal in our life. And so I get it, I get what happens when things get layered on top, and especially when it's new. But what I didn't, what you were saying to me, that I have to be honest, I didn't have a lot of like, I didn't have a lot of perspective for is an even people listening right now might be like, I don't understand what the problem is, like, you're saying the kid can't eat a cupcake. But when he eats the cupcake, literally nothing happens. He doesn't get sick, he doesn't feel unwell, nothing happens. Why can't a kid eat the cupcake? And that's the part that I mean, honestly, I didn't have context for and I think you're gonna explain it to me. Is that right?

Jen 12:42
Yeah. So when someone that has celiac disease, so celiacs, an autoimmune disease, and it damages the lining of your small intestine. So the only way really, to diagnose it properly is to get a biopsy. So because I'm has type one diabetes, she gets annual labs for a whole bunch of other autoimmune diseases. And every year, they came back normal until this year. So this year, she had a IGA test. It's like a trans gluten something test, there's three different tests you're supposed to get, and whatever it was, came back high. So they're like, Okay, it's high, just don't do anything yet. Like, well, you know, she has no symptoms of this. We don't have this in our family. And like, yeah, we'll just continue to eat glue in and we'll do the biopsy in a couple of months. And so we did that. And then when they did the biopsy, the doctors came right out and said, like, you know, usually have to wait for the results of the biopsy, but they're like, yeah, that, you know, it doesn't look good. And what he meant by that is, I guess there's like finger like projections in your small intestine, that are supposed to absorb nutrients. And then with celiac disease, the Ottoman immune response wears down those cilia and they ended up like flattening. So it appears different and you know, sometimes it's so bad that you can tell right by you know, when when you get the biopsy, the doctor that's there, sometimes you have to wait for the results to come back. But it was pretty certain that she had it from the doctor's response. Nonetheless, he said, you know, don't change anything until we call you with the results. So that's what we did. And they called us and she was diagnosed with celiac and we had like a whole presentation some of it I shared with you. Because I really knew nothing about celiac I thought like gluten free was really like trendy and you know, just something that you know, people that were usually like really skinny just kind of complained about, you know, and I thought it was more like a health lifestyle than something that could be really bad for you and and being really bad. What I mean is, even though there's no symptoms that she's getting, it's affecting her small intestine, and if she would continue to eat gluten, because that was my next question is like, you know what she's diagnosed now, but she has no symptoms. So Can she just like, you know, eat gluten until She has some symptoms, and they said no, like, it can lead to a cascade of autoimmune disorders, cancers. Now, malnutrition malabsorption. So it's really a serious diagnosis. And you know, so you can't have the cupcake. But there's so many other things that you can't have either that you would not have thought of. And that's kind of what I wanted to also follow up with is, like, so many people, including myself, before my daughter was diagnosed was like, we'll just eat the pizza, like, you know, you're just going to be a little bit sick later, like, you know, like, your stomach's gonna hurt, you're gonna have to go to the bathroom a little bit. But that never happened to my daughter. But like, that's what I had in my mind when I hear of like, a gluten allergy, you know.

Scott Benner 15:43
But now, you know, the rest of it, which and you just explained a bunch of stuff. I mean, I guess I knew, and, but not to that detail, like I understood about the, like the finger appendages and how they get flattened out that it's been explained to me. I know about the absorption. I get all that. I think that. I think that in fact, I don't want to say in fairness, because I'm not trying to defend myself. I honestly. So let me be clear before we go forward. I don't think I did anything wrong back in that that conversation. I think if people go back and listen to it, there was a guy telling me, like, you know, he's out of his, you know, he's out of his right mind at this point. And I'm like, if given that kid a cupcake next month helps you not feel like this. I didn't mean every day, I didn't mean that kids should be eating like gluten constantly. He seemed like he was, in my mind singularly focused on this thing that was going to be taken from the kid, this idea of going to a birthday party was very focused on it would be be taken away. And I thought, Well, geez, just if it's, you know, excuse me. I'm sorry. My throat has a problem. Give me a second to take a drink. I apologize. So what I was, what I was saying was like, if, you know, if this one little concession is going to, you know, I mean, like, he wasn't just a little uptight, he he was on edge. And I thought if this one little concession was going to help him focus better, that this might make everything better, and etc. You mean, nothing's gonna happen to the to the child at all? I don't know that. I still don't understand that enough to say that. I wouldn't still think that, you know, like, you know, is that it? You know, I'm saying like, if you're in this situation, and you eat gluten free most of the time and have gluten once you're getting cancer, you don't I'm saying like, or like, or is it? Do you mean? Like, that's the part I don't understand. Like, I'm not saying

Jen 17:50
the problem is that it's like, such a vague thing, like, Oh, you're gonna get cancer, you know what I mean? Like, because, like, a lot of people get cancer, you know, like, so I can sympathize with that thought. And I think when you said that, that's something that's so easy to grab onto is like, Well, yeah, like, you know, if they're that upset, just give them the cupcake for a second, you know, and then move on. And the next day don't have a cupcake. But it was so impactful when, you know, our gastroenterologist went over, like the amount of gluten that can make someone sick, like, you know, you can't get french fries that are fried in the same oils, anything that had gluten, like we had to buy a new toaster for my daughter just to toast her gluten free bread. Like there's the tiniest amount that can do damage to you when you have the autoimmune disease. So it's not like a gluten allergy. It's like, you know, something more than that, that the smallest amount can make you sick, even though you have no other symptoms. And the thing is, once she took gluten out of her diet, she actually can feel now like when she gets gluten, so like if we went out to a restaurant that was supposed to have had, you know, a safe fryer or something. But maybe it got cross contaminated by like sitting on some other surface that had gluten on it. Like she then can feel it in her stomach. Like she still doesn't like have the bathroom symptoms or anything like that, but she can tell that her stomach feels off. So I'm just wondering if like, you know, I thought maybe she had no symptoms because that was her baseline. Just like you know, you can't you don't know that you can't see when you're a kid until you go to the doctor and then you can see you know, so I thought well, maybe that but there was nothing even looking back that I would have been like, oh yeah, like I think she has something going on with her stomach. Like, there was nothing like that. Yeah,

Scott Benner 19:38
I understand. No, I definitely do understand and I and I want to be clear, like, I really appreciate you coming and explaining this to me and to everybody because I mean, I got done with that episode and I never thought twice about and I heard from you. And then I would have to say in fairness. It was listened to many 10s of 1000s of times and I only heard for about four or five people on it, but I still heard from four or five people about it, who, who all rubbed up on the same exact thing that they caught your attention. And so that's the thing that I'm trying to understand is are you this is gonna sound accusatory and it's not, I'm just, are you more focused on it because it's new? Or, because when I brought this up to an I brought this up to a medical person, and I was asking them, and I said, Hey, here's what happened. I said, this woman's great, she's gonna come on and explain it to me everything. And the person went, Oh, I bet that made them really upset. And I was, like, I said, I don't know how upset they are. I said that they're very, like, concerned about being clear about it. And the vibe was from the medical person. Yeah, in the beginning, you can feel that way. And I was like, okay, but they weren't making a medical judgment. I think they were just reflecting what they've seen in other people. That makes sense.

Jen 20:58
Like, I think that you just have to get in the groove with it. So like, I've heard, you know, people that you've interviewed with celiac, you know, and they're just going about their lives, like, yeah, you know, we can eat the meat, we can eat the vegetables, we can eat fruits. But it's just so I do think that I think I even said in my message to you that, you know, it might be just that it's all so new. And it's overwhelming, because it's definitely like Lewin is in so many different things. And I could see myself being in that position so much to be like, Oh, well, there's no symptom. So let's just do a little gluten now, you know, that I, I don't want other people to, to think that way. Because I think that you have to get into the part that it's really hard, it becomes easier, and then it's a lifestyle. And then if you're if you're sabotaging yourself by your or your, you know, child, by just letting them have it, sometimes it's like giving them a little bit of poison every now and again. And then it's not a problem until it's a problem. You know, so that's where I, you know, just wanted to fill you in, because, you know, we've talked about cupcakes, but then there's like, things like birthday parties, they certainly were really focused on birthday parties here. It's not all toys.

Scott Benner 22:14
It was just what spurred the conversation the other episode, of course, yeah, so

Jen 22:18
like, you know, like, like, you know, let's say like soy sauce, smoke flavoring, like playdough. Like, you know, you go to a birthday party, they're decorating cookies, you can't decorate the cookies. It's just, it makes things so much harder. Because if you think about, honestly, living like you have celiac, for a week, and you know, you have to look for natural flavoring, you have to see if the spices that they're using contain any gluten. And it's just ridiculous. Like, it's really hard at first. So I think I'm definitely in the hard part. But I want to make it clear to everyone that listens to your podcast, that if you have celiac disease, the only way to ensure that you're going to be safe and healthy, is to completely eliminate gluten. And then at that point, you know, everything goes back to normal and you live, you know, fine, your risk for everything is is back down. But I think it's important, you know, to say that you can't cheat a little bit,

Scott Benner 23:13
though, certainly, I am on National Foundation for Cancer research.org. It's NFC r.org. And there's an article here about celiac. And it says what is the link between celiac disease and cancer? There are three types of cancer associated with celiac disease. There's e ATL, which is enteropathy associated T cell lymphoma, non Hodgkins lymphoma, and wow, Aiden, no carcinoma of the small intestine. So but then there's a description here that says the disease does not cause these cancers, but there is an increased risk of an individual. If an individual has celiac disease studies have found that the risk of lymphoma is slightly higher among people with celiac, than the rest of the population. The overall risk varies person to person, but those with more intestinal damage have been found to have a higher risk. For those living with celiac, it is essential to follow a strict gluten free diet. Doing so protects the intestine and in turn reduces the risk of developing cancer, more restaurants if Google Okay, all right. So, yeah, I so for clarity, I've never read that before saying that I would just give the kid a cupcake if it made you happy. And I wasn't even talking about the kid being happy. By the way. I think if we remember back to his conversation, the child wasn't that upset about the food? It was the it was the the adult, the parent. Yeah, I was wondering about that in your situation. Is your kid more adaptive to this than you are or vice versa or how's it going for you?

Before you go to a restaurant you read a review before you buy a television, you read 100 reviews. Before you move to an area you learn all about It, blah, blah, blah, blah, blah. What did you do before you bought your blood glucose meter? Oh, you didn't even even look into it a little bit, did you? Okay, that's fair, it's not too late, you probably got your blood glucose meter at a time in your life that was full of turmoil. But now things are a little calmer. And you can take five minutes to find out if you're using a good blood glucose meter. One that you can trust the accuracy of one that's easy to use, and easy to transport. I am of course talking about the Contour Next One blood glucose meter. Just this evening online, I watched a conversation where somebody said, My CGM is way off. And they proved it by holding up a picture of the test they had done with their blood glucose meter. Now I won't name the meter. But in the top 10 blood glucose meters, this one was nowhere near it was nowhere near the top 10. So this is a common situation, they're using a blood glucose meter, whose accuracy is not dependable. And that's making them question a number they're getting from another device that is dependable. And it creates this sort of uneasiness that you don't know what to do next, like how do I give insulin off of this, if one thing says one thing and one thing says another, I'll tell you something, right now, I don't know what my daughter's blood sugar is at the moment, because I came into this room without my phone. But if I had the phone and grabbed a meter and tested her blood sugar, I guarantee you the numbers would be very similar. Because Arden is using a quality glucose monitor, and a quality blood glucose meter. Now these blood glucose meters are not expensive. And they're easy to obtain. So if you got one given to you by a doctor, where you bought one real quick and uh, you know, I don't know you were in a store one day and you're like, I think my kids got it, I don't know how you ended up with a meter you have. Maybe it's just the one that you thought your insurance covered. You owe it to yourself to look into the Contour. Next One. For one thing, it may be cheaper in cash than you're paying right now, through your insurance. For a lesser quality meter. These are things you should know for sure. Contour next one.com forward slash juicebox. Just take a couple of minutes, go through the webpage, make sure you're doing the right thing for yourself, it would not be difficult for you to move to a quality, accurate meter that has a bright light for nighttime viewing an easy to view screen. And if you want an application for your cell phone, where you can save your tests and other information. They talk to each other by the Bluetooth, the app and the meter. It's you know, it's 2022 stuff's amazing. Now, oh, by the way, if you don't want to use the app, doesn't matter works fine without it. Contour next one.com forward slash juicebox. Just five minutes, check it out.

Jen 28:12
I just think it's so hard to tell because she's 11 and she's a girl in middle school. So I think that at that age, everybody wants to just blend in and you know, be like everyone else. So if she was, she's upset sometimes for sure. Especially like, you know, at restaurants, they'll bring you out bread without even asking like, you know, and then I have a 10 year old that doesn't have celiac and she's 11 She just turned 12 Two days ago, but that's hard because you know, her brother can do it and she can't so sure you get some of that. And I think you know, I am also am sad for her because I know that, you know, when she goes to a friend's house, they have to ask her first you know about keeping her safe, uh, diabetes, like a really quick blurb. You know, I've said, here's the, the rescue thing, we've never needed it. But here it is just in case and then they're like, Okay, what kind of food can she have? So it's just all these additional questions to have to like, lead a normal life. So yeah, it's probably some of me, a lot of me, but it's also her and it's becoming more and more her because socially, it's just so difficult. Like, you know, that age like even she's gonna get ready to start like going somewhere for dinner with friends. But that's not like a normal experience where you could all share an appetizer or something like that, you know, like, so

Scott Benner 29:32
generous with both ad for right.

Jen 29:35
Yeah, I think everyone would be sad for their kids. When do they have to do something different and I don't think it'll last forever. Like you know, it just probably in this moment until she find some like things in her groove of, you know what she likes and then it won't be as big of a deal but no, I agree. I'm sounding like the other guy that was

Scott Benner 29:54
well, I don't want to paint you in that boy. I thought, I thought if I'm being honest, I thought you You were probably motivated by exactly what you said earlier. I think you like the podcast, I think you think it does good stuff for people. And you didn't want something that felt like misinformation to be involved in it. And I genuinely appreciate that. I also did think that your enthusiasm did come from a place of being more newly diagnosed. And I imagined that part of that was what you just described, just this, you know, this thing had just been taken from your child. I mean, I heard it in Josh's voice, you know, something came along and took something from his kid. And then it came along again and did it again. And, you know, and Josh, if you remember has the extra added issue of he has type one. So he had a little bit of his own, you know, what are called childhood trauma around diabetes, that it's baggage. He knows how it affected him. And he's worried for his child as well, you know, and while you don't have I'm sorry, I might be speaking for you don't have celiac or type one, right? No, no, but no, my family. Yeah. Oh, really. There's just no one else, just your lucky daughter. Yeah, but

Jen 31:05
the thing is, like, there has to be someone else. Because what they said about celiac like, in doing my research, it said that like 83% of people are not diagnosed, or misdiagnosed that have celiac. So when my daughter was diagnosed, they said it's genetic. So you know, everyone in your family needs to be tested. So we had to test my two year old, my nine year old, my husband and I, and all of our tests came back kind of normal, except for my two year old, his levels came back elevated, and also his total IGA was low. So it was like an IGA deficiency, which puts him at risk for autoimmune diseases. So we need to monitor him. But you know, my parents, I've lived with five generations, you know, I knew my grandmother, my great grandmother, my great, great grandmother. And you know, we have a pretty large family, and no one else has had type one diabetes, or has known they had celiac. So,

Scott Benner 32:04
anybody? I'm sorry, anybody ever run to the bathroom after a pizza party or something like that? Like, like, you know, I mean, can you look back and see it somewhere? They just didn't know.

Jen 32:13
I feel like that. Yeah. But the other thing is, like, if you go to be on celiac, it actually tells you like, which I was really surprised about, like not telling everybody what your diet and how much you have to cut out is before you ask them to get tested because they won't get tested because they'd rather not like, give up whatever they can't have.

Scott Benner 32:35
I say that you don't tell them. Hey, we need to get tested to find out if you have to give away your 20 favorite foods. Yeah, people are like, Yeah, I'll do that next week. Thanks. Yeah, no, no, I listen. It's uh, I mean, I have a ton of compassion for you. I don't know that. I don't have something like, did you? Um, when you said your whole family got tested it was everybody biopsied?

Jen 32:59
No, no, there's a blood test. Okay, yeah. And then if one of those come up high, like, you know, I guess you could have a high result and it not be celiac. So the only way to diagnose it, you know, confirm the diagnosis is with the biopsy.

Scott Benner 33:14
Okay. Yeah, I mean, I have, like, when my iron was like, I don't know how much you listen, this podcast, but when my iron was low, I had a doctor wanting to test me for celiac. And he came back saying, like, you have a gluten sensitivity. And that was, you know, as much as he would say. And I was like, okay, you know, and I think there were some, like, small he scoped me was a big fun day. And I do think I had some of that damage that you spoke about to like the, the fingers in the, I don't know, obviously, I'm at a loss for a lot of the technical words. But my bigger problem was I had like some Barrett's esophagus, Junior, sick, this, this is gonna sound scarier than I think it is. But hold on a second. Keep googling. I guess I have something called Barrett's esophagus. Jeez, I don't know, like it's a condition where flat pink lining of the swallowing tube that connects to the mouth of the stuff that connects the mouth to the stomach with the esophagus becomes damaged by acid reflux. So I had some acid reflux. And then you get kind of this thickening, you know, lining, and that makes you more susceptible to a certain kind of cancer. So now I have to I think you have like, I'm reading this now. If it goes untreated, which I guess would mean if I just continued to have the reflux, I'd have like a 60 times higher chance of developing developing esophageal cancer. Which the five years are I've already just not good to begin with. So I just like I use the DNS it's at first because I just want to right on top of it, but then I realized, like I have this reflux because I'm eating something my body's not happy with. So I cut out I've talked about before on the podcast, I cut out all kinds of processed oils. I don't really deep fried things anymore. In a number of other little adjustments to my to my life, I also eat in more of an intermittent fasting window so that my body's not constantly digesting food, especially at night. That kind of stuff and I don't take the the reflux medication anymore, and I don't have reflux anymore. So, like a diet change, fix that, for me. Anyway, this is loosely related. But I did see

Jen 35:39
further though, when you're like levels came up that you ever had a gluten allergy? Like, how do they know that? That wasn't silly. I claim that it was causing the other problems.

Scott Benner 35:47
Yeah, I, to be honest with you, I don't know. Right? Like he, we were going through so many things, trying to figure out what was wrong, because what was really wrong was I was shutting off. Like, I look like a robot whose battery was just draining slowly. And by the time we got to the guy who wanted to look for celiac, I was like, Dude, my first is really low. I think he just gave me an iron infusion, like, I'd be okay. And he made me not eat gluten for a month before he would do that. And I have to tell you that

Jen 36:17
it didn't. I mean, that's something else that can be caused was celiac, you know, so you can do a biopsy, yeah, you

Scott Benner 36:25
can absorb the the iron through your digestive tract. The same way. Now, it looked like I was going to be getting the infusions forever. Because I would get them. And then it would deplete again, because I just wasn't getting it through nutrition. And taking an iron tablet wasn't helping me either. But I soon learned to mix the iron supplement with a vitamin C, like in sorbic acid, take them at the same time and like it's like turbo boost the the iron into your system, so I don't have to get the the infusions any longer. Which by the way, really help quickly. Because no, I just take like an iron tablet like twice a week with a vitamin C, and I'm okay. It's just I mean, the whole thing. The whole like Jenny, and I've been talking about lately, like your gut, its ability to pull up nutrition and the need for it to be balanced. You know, with the bacteria that's in there. It's all just incredibly important, and probably really tied to autoimmune issues as well.

Jen 37:30
Yeah, I, you know, I can't believe someone had mentioned something when Emma was a young about her gut and health and how important it was. But it was someone I think I heard you say it on the podcast the other day, like if you heard yourself talk about, you know, these vitamins and stuff, you would have been like, oh, you know, what this guy like, he seems really nice. But he's really like out there. And that's kind of like my whole point of view to the, you know, I can't believe that what she said is probably pretty accurate. The other thing about my daughter is, you know, she's been overweight, like her whole life since she was three. And that's when the person that mentioned that gut health was telling me, you know, I think there was a book they recommended, like called Wheat Belly or something. I still haven't read the book, because I was listening to it. And then Emma was diagnosed, and it was making me angry, because I don't know, I was just, I was too much at one time for me. So I never actually finished the book. But in listening to your podcast, and just like some of these things that she said, it seems like, you know, gut health is like, so important. And it seems to have been, you know, something that, you know, causes a lot of these issues or is seems like it's being pointed in that direction, at least. Right? Okay. And then even, you know, the role of vitamins and probiotics and things like that, that I never would have thought of, you know,

Scott Benner 38:51
I do wish I understood it earlier in my life, because I've carried weight since I was like, I don't know, in my early 20s That never really been commensurate with how I eat or my activity level. Like, I'm, you know, I don't know, I, there's certain words we're not supposed to use anymore in polite society, but in my personal life, like, I'll tell people like, I'm the fattest person that doesn't eat that you'll ever meet in your life. You know, like, I just don't take in a ton of calories. And it doesn't matter. Like my body just like if I even ate in a reasonably like, quote unquote, normal way. Today, if I just had, I don't know, some carbs and you know, one little junky thing, you know, but ate pretty well other than that had three big meals, I'd weigh five pounds more tomorrow, like my body would start like retaining water. And it's just, it's, it's weird, and I'm sure I'm sure it's likely to do with something with all these things that I figured out for myself on my stomach and you know, the things that I've been able to pick through. I thought for sure getting the iron thing together was going to be like I honestly like in the back of my head. I was like, I'm probably going to lose like 20 pounds when this all gets straightened out. And then, you know, that didn't happen. But I'm also old, so I don't know if that has something to do with it. And

Jen 40:10
well, that's the same thing with my daughter, though, you know, like, I thought that even that for her that, you know, well, she's not really eating any carbs now, because she doesn't like the gluten free bread and you know, the pasta, we don't have pasta. So she's literally eating like fruits and vegetables and meat, and she's still weighing the same amount. So that's another thing that we've been looking into is like, you know, what's driving this? And like you said, it's probably something to do with, you know, her gut, or, you know, I don't know that for sure. But some other kind of thing that we don't know about and haven't been looking for everything that like she's been diagnosed for hasn't even been on my radar, you know. So it's just crazy, because I hear people like having such a hard time to be diagnosed with celiac when they're having all these symptoms. And, you know, we weren't even looking and she was diagnosed with it. So

Scott Benner 40:54
how long? How old? Is she now?

Jen 40:57
She's 11. She's 12. This week, I'll get used to that

Scott Benner 41:00
happy birthday. And has had this this diagnosis. fussy, like just over six months. Really? Yeah. Okay. And but when was she diagnosed with type one? How

Unknown Speaker 41:09
old? She was six years old?

Scott Benner 41:13
No. Okay. Oh, that's a while ago, then. Yeah. How was all that going? With the diabetes piece? Like it? Has it always been? Well, I guess where is it now. And where did it start?

Jen 41:28
Um, she has always been like older for her age somehow. So nothing was ever that terrible. As far as diabetes, I was so lucky for that, because my son is really the opposite of that, where everything is an issue. But he, she started off on injections we got on the Dexcom just live out two months, maybe a month, actually, after she was diagnosed. And then we had the Omnipod in April, and she was diagnosed in December. So we got on everything really quick with technology. And I looked into looping. And you know, I kind of just followed the page a while, then ended up taking the plunge about two years ago. So that's made things a lot better, so much better, especially like sleeping, I can't believe you know, how we used to have to wake up in the middle of the night and do the finger checks. And it's just not having that anxiety about that. So it's going really well with diabetes. And I'm also very excited about the Omnipod five coming out and no getting that technology. So I think that'll make things even easier. And that's what it was, it was just that, you know, everything was so smooth. After five years, that it's just another thing. And like you said, you know, everybody has something or you know, we already have our thing. That's what I've always told them is like everybody has something you don't know what everyone has. And it was just like another thing. So

Scott Benner 42:49
they were and then somebody came along was like, and no bread. She's like, Wait, what happened? I already got the Hell yeah,

Jen 42:55
I was I was good at this. Why another thing Oh,

Scott Benner 42:59
my goodness. But she deals with a reasonably you're, you're, you feel like she's okay. We're at first

Jen 43:07
grade, she was like getting presentations to her classroom about like injecting herself and stuff. So she's really like an outlier when it comes to, I think kids in general. And then especially with handling things that are a little bit mature, more mature for someone their age. So

Scott Benner 43:22
I'm gonna have to have Arden back on the show at some point. And I'm going to talk through this, I'm gonna get her side of the story on what, what happened last night in our house, which I know is going to shock people when I say out loud, but Arden is that she's like 17. She's going to be 18 in April, May June, maybe like four or five months. She's had diabetes. And she was too. And last night, Arden gave herself her first injection. She's really never given herself an injection before. And wow. Yeah, so she was on. She was on she's on the steroid pack, which is over today, thankfully. So we've been going through a lot more insulin than normal. And a couple of times during the last couple of days in the story pack, we've injected some insulin to try to save the site because we were like you're flooding the site with with insulin, I think, at points during the story pack Ardens. Basal went from 1.1 to four units per hour, just to stay on top of the steroid pack, but as the steroids titrated down it, you know, there were times when it didn't need all the Basal and then times when it did and there were times that got ahead of us and we anyway, we would knock it back with this with an injection trying to save the site a little bit. And so last night, I said to her, Hey, we got to inject. And I drew up a needle like while we were talking and I put it on the counter. And I just said why don't you do it? And she goes, alright, and then I said uh, you know, I'm like you're gonna go away to college. I'm like, at some point. Like your pumps not gonna, like it's gonna get knocked off or something's gonna happen like You're going to need to know how to inject and it's gonna need to be, you know, kind of like fluid and seamless, you're not gonna be able to sit around and she's like, okay, and she sat there for a while, like giggling and laughing and holding it and, and then she's like, I have to go somewhere private, and she disappeared into the bathroom. And anyway, I'm gonna let her tell the rest of the story on the podcast one day, because she didn't come out of that bathroom for about 90 minutes.

Jen 45:24
Oh, my gosh. Unbelievable. Yeah, it's funny, like how you get so far away from it, though, that that's not even like something that you probably have to do all the time. I mean, I'm assuming you probably aren't injecting manually very much or, you know,

Scott Benner 45:37
yeah, hardly, maybe a handful of times a year. And you know, or something like that. But it's just, I mean, she was so young, when we got the pump, she was four. And she had diabetes when she was two. So two and three, like I was injecting her, and it just never kind of happened. And then we've had just really such good success with Omni pod for so many years. It's just never a thing. And so, if it comes up once or twice a year, where you have to inject real quick, you know, to check to make sure a site's Okay, or something like that. Yeah, he's always just sort of been like, but can you do it because like, I don't know how to do it. It was never like, out of like, like, I don't want to do it, it was just, it was easy and quick, you know, and then the next thing, you know, you look up and it's, you know, 15 years later, and you're like, Oh, whoops,

Jen 46:24
that's, I kind of wonder how Emma would be now because she was doing it when it was like first grade, second grade. And it was like, you know, something? I don't know, that was different. And I think I don't know, if she I don't think she would be scared now to do it. She hasn't had to inject herself. I mean, she has a stomach virus right now as we speak. And it's our first stomach virus. And you know, since she's had diabetes, and I spoke to the doctor yesterday about giving manual injections, and like, I had to look for all this stuff around my house, like I had it, but it was just like, you know, we haven't had do this for so long that the thought of that might be intimidating at some point, if you get away from doing it. So I think it was good that you know, art and decided to take the plunge and do it ourselves. Something, you know, in the back of my mind, I'm like, you know, I better start doing this occasionally as well, because you just take technology for granted. Sometimes

Scott Benner 47:13
you also are likely not wrong about that, because I might have told this story before, but I'll tell it quickly here. You know, she stopped using injections two years into diabetes when she was four years old. And we didn't have any, like reason to inject for like a year or two, you know, after that, and then one day, I just was like, I don't know, if anybody, like can feel what I'm saying. But sometimes you put a pump on, you're like, I'm not sure if this site's working. And if you just inject some insulin, and you suddenly get some movement, you go, Oh, maybe it is the site. So this happened one day. And I just called her out into the kitchen. I was like, Hey, I gotta give you some insulin, and she brings the PDM for the the Omni pod and hands it to me. I'm like, we're going to inject it. And I pulled out the needle. And she like, you know, it was like, like a Bugs Bunny react. She said, whoa, whoa, whoa, whoa, whoa, I was like, what she goes, what is that? And I don't mean like, again, she was probably like, six by then. And it wasn't like, what is that? Like? You're not giving me a shot? It was what is that? Like? I don't know what you're showing me. Like she didn't even recognize the search engine. That floored me. Because I had kept track in the first couple of years. And between finger pokes and injections, she got poked like 10,000 times in two years. So I'm like, I'm like, you don't remember this. She had no recollection of what it was at all.

Jen 48:35
Yeah, fascinating. Well, even you talking now like i when she said manual injection, I have like those little skinny, I guess, syringes that I was planning on using when I had to do the manual injection. And now that you're talking, I'm like, wait, every time we go on vacation, I get like scripts filled for those pens that I could just put the needle tip on. And that's like how we used to inject her. So I don't know why they said like, when you have to give her a manual injection, I thought you had to use like the scariest tool possible to go and try to give her an injection. I could have just used her pen, you know? So

Scott Benner 49:06
I'll tell you that this is just go. I'm sorry to mean to cut you off.

Jen 49:11
No, it's just like a dry run for something. Something's like really serious that we'll have all our stuff together now. And you know, know, to do this a little bit more often to be prepared. So

Scott Benner 49:18
yeah. Oh, it's hilarious. Because we were. I mean, you know, she stopped. Like I said, she stopped using injections when she was four. So that makes it like 2008. Maybe? And no, why six months ago, I said to the, the endocrinologist, the nurse practitioners, like, hey, while you're writing out prescriptions, can you write me a prescription for a box of needles? And she's like, we gonna start using them again. I'm like, No, I just ran out of them from 2008 because we had had a box left over and they how long they lasted, you know, and, and she's like, Oh, sure. So she just writes the script. She goes, that's crazy. And when they came to the house, I was like, I have not gotten a prescription for needles filled in Like, I don't got 2018, like 13 years or more. That's how long that box of needles lasted in my house. So this next box should last. Maybe, you know Arden's 30s, maybe? Yeah. But it's just it's, you know, I just want to tell you, like, I take your point, like, it's, you know, things come and go, you have to kind of keep up on stuff. And, you know, she could just look, your daughter might look up one day and just be like, I don't even remember doing this. Because Arden, I'm telling you back then she was floored, whatever that needle was, she had never seen it before. And that confused me. Okay, so I want to talk a little bit about how you end up eating with celiac. So like, let's be more specific. And we were joking earlier. Like, we're only talking about cupcakes, but we're talking about wheat, right? No wheat.

Jen 50:53
Yeah, wheat, barley and rye. There's like a handful of random ingredients that you just have to look out for like, natural, natural flavorings, smoke flavorings. marinades, they even say like lipstick and lip glosses and things like that. So you're obviously not eating that. But it is. It does feel normal when you're making dinner, but it just kind of paralyzes you at first because you have to be like, Okay, well, what am I making? Exactly? You know what sauces that does? I didn't think of soy sauce. For some reason. I don't know why. But that was something that I was like, okay, so you have to have gluten free soy sauce, too, which is totally doable. It's more of a social thing about going out. And I was, you know, we're a busy family, I know that you have your son in baseball, and like travel baseball's crazy. And sometimes you have all these games, and you just have to pick up something on the road. And that's what makes it hard is like adapting to those situations and knowing you know, how easy it is for, you know, even a fast food restaurant, if they really wanted to cater to people that can't eat gluten, you just have one fryer that you put the fries in, that are separate from all the other stuff that you put the breaded stuff in. But when I even when, you know, Chick fil A is known for like, having a dedicated fryer at most locations. But I talked to the manager and I'm like, do you have the gluten free fries? Are they gluten free? And she's like, No. And I'm like, Okay, well, you know, in the celiac community, it's, you know, well known that you can have say fries at Chick fil A, I even actually went there to get french fries, because I knew we were going somewhere else for dinner when we were on a vacation. And I just wanted her to have a normal experience. And she's like, I'm like what exactly like I depressed like, what exactly about the fries are not gluten free? Like, do you have the separate fryer? And she's like, yes, we just don't have gluten free french fries. And I'm like, well, it's just potatoes. And she's like, Oh, then they are gluten free. So I just felt like uneasy that I was able to, you know, talk to someone talk someone into basically them being gluten free. So it's just like, there's not enough information. And it's so easy to make accommodations that I just wish people knew that like exactly what it was.

Scott Benner 53:11
You know, I like what you did. I think instead of trying to educate somebody just like listen, take those French fries, and put that fryer over there and then give them to me. And that's all you need to know. Thank you. These are gluten free now. Thank you very much. Yeah, I mean, you're not gonna, you're not gonna, you're not gonna educate everybody. It's worth trying. But you know, by the time you get that person educated, she's not gonna work at Chick fil A anymore.

Jen 53:35
Yeah, but you know, like, even just saying, okay, yeah, you could just put them in that fryer. Now she knows, you know, there's, she doesn't need to know the whole story behind everything, you know, but I think there's a lot of places like that, that it's like, well, if you just do this, then you also have gluten free. And that would actually be good for your business. Because you're, you know, helping a whole bunch of people that can't eat your product eat. But as far as like, I guess eating at home, it's just, you know, making sure there's no gluten and things and that's really just what it comes down to is looking out for those ingredients. I guess I just don't have them all memorized yet. And that's why it's harder to because it's I'm still learning.

Scott Benner 54:07
Super interesting while you're talking like, trying to I'm trying to wonder where all places I would find gluten. And I realized it's very similar with carbs for people. Like, I remember being with somebody one time and I was like, here, count the carbs in this plate. And they did it. And then I said, Okay, where'd you get them from? And they did it. And I said, you know, you didn't count the ketchup. And they were like, well, that's a condiment, I suppose carbs in it. I said well, not Yeah, right. Yeah, there's normal right right. She's like not many right? I'm not really as a couple tablespoons of ketchup here. I said this could be depending on what ketchup it is. This could be 10 carbs. You know and honey mustard and other little things that condiments that people don't think about or, you know, they were they just get it in their head that a slice of bread is is 20 carbs, but then you grab another brand of bread and it could easily be 28 carbs in how do you keep all that straight?

Jen 55:01
Yeah, and then even like, you know, you go in, there's an appetizer of like, keto smoked wings, and you're like, oh, there's smoke, they're not fried. They'd be good. And like, like, you don't fry these, right? Like, oh, no, we do fry them. But they're smoked. Why are they also fried? You know? And it's like things like that are like, you know, barbecue rub and the barbecue seasoning has gluten in it. Oh, and it's like, Well, why do you have to do that, you know, everything else was gluten free until you got to that seasoning. And I'm not saying that to people, I'm just saying that in my head, you know. So it just limits your options. And that's really, that's what it comes down to, I guess it's more of an emotional thing. Eventually, it will be fine. Like you said, you know, you're not going to have as big of an option of everything. But it's also such a pain to have to ask people like, oh, well, you know, how about this do you have, it's sometimes it's just easier to eat at home. And that's what I see is like, you know, when I'm part of different groups online is that there's like, oh, you know, I just feel like, I can't go out or blah, blah, blah. And I just, I didn't want her to feel like that, you know, and I know that you don't want that for your daughter, either. You know, so I when you were having the conversation, I just knew that. Even now, you said you would still have reached the cupcake. I hope by the end of the podcast, you understand that she really couldn't eat the cupcake. Because it's causing problems and it's setting her up, you know, like you're trying to set up good habits with type one diabetes. You can't you know, you just kind of have to it's not your body that you're trying to help either that it's not your, your diagnosis. It's not your disease. So I feel bad, like, you know, gambling a little with her health to

Scott Benner 56:40
go. Well, I don't disagree at all. I mean, but so can I play devil's advocate for a minute, just for fun. So we have some that disagree about because it's more fun. We disagree. And by the way, I don't disagree with you. I hear what you're saying. But let's think you ever ever cigarette? Yeah, yeah. Are you a smoker? No. Why did you do that? Jen? Didn't you know your your hell?

Jen 57:06
What's that? Is all my friends were doing.

Scott Benner 57:09
That's how that cupcakes gonna get eaten, Jen. That's what that's, that's my mom kind of saying. Like, I think that intentions are terrific. And goals and planning. It's all like, it all makes 1,000% sense to me. I don't know that Josh's kid is never going to have a cupcake again. Like that's the end and and maybe they maybe will and maybe won't. But I didn't feel like it was worth Josh feeling the way he felt about it like that. And so I'll relate it back to myself. You know, I do my very best to keep Arden's blood sugar between 70 and 120. I mean, I really, really, really do my best. And she does too. And right now her blood sugar is 111. And I'm pretty happy with it. It she got up in the morning, she had a little low overnight, she got up in the morning at around 90 and started heading out to school and it started to pop up a little bit. We had forgotten to reset an override to deal with the last day of the steroid. So we didn't need the override overnight. But we needed it during the day. We got it set off for blood sugar went up to 140 We got it back down to 111. Now I imagine in the next two hours, it's going to be more like 85 Now that is hurting Arden. Like there's it is right? It's I don't know if it's taking 30 seconds off the end of her life or if it's going to give her a complication when she's 78 instead of when she's 83 like you know what I mean? Like, I don't know what it's gonna be. But I don't know that it's avoidable at this point, like, you know, I mean, like, I I think it's gonna happen. I think blood I think my blood sugar is gonna be 140 for a while today. I think that there are some things I apparently can't eat, but I haven't. I don't know. I'm 50 like, am I never gonna have pizza because the guy said I have a gluten sensitivity. Like when I eat pizza. Nothing happens to me. And then my then I start extrapolating, this is just for me. But I started saying to myself, yeah, my mom's 79 I see what 79 looks like. It ain't great. You know what I mean? Like, it ain't bad, but it's not like she's not up jet skiing every day. You don't I mean, and so like, if I go out at 79 instead of 83. But I had pizza when I was 55. Okay, like that's sort of where I'm at. And I know that's weirder when you're talking about a child, obviously, because there's way more unknown years in front of them that I have. But I'm just saying that I think that's the I would think that for most people. That's the the reality of the situation. Like I wonder how many people We'll never have that cupcake. And I'm not obviously not certain of that. And I'm sure plenty of people will and I say, you know, good for them. Like, like, seriously, I mean that in a very supportive way, if that's what they're gonna do, I think that's what they should do. I still think in Josh's specific situation, until he feels better, I would feel badly for him being that tormented over the exact scenario that he brought up in that episode. Not that, and I don't see, imagine

Jen 1:00:27
that being though, like, I really, I'm still at that point, because I can't see you saying, Well, I'm just going to be happier. And my child's going to be, you know, a little bit sick, because you'd want to put your child first. So if even though they might go blow it by, you know, smoking or whatever, we were equivalent to, you have to do what you can while you can do it, and then, you know, like, even with blood sugars and keeping that tight of control, like, you know, eventually our children are going to go to college, and they're gonna go to a party, and they're gonna be crazy for a little while, maybe even a whole semester. And they, you know, but why not do what you can do now? You know, I guess maybe there's a tipping point. And maybe Joshua's at the tipping point, right? I just know, there's a lot of people like me that were listening that aren't at the tipping point, but have a little thing in the back of their head saying, you know, what's one cigarette? What's one cupcake? And it's just, it's a habit, you know, what I mean? It builds habits. And that's what you're trying to do is be a role model. Oh, yeah. And so even though you're saying that, I think that like you weren't in Josh's position, I hoping that if I think even Josh probably wouldn't do that in order, you know, just for to make himself a little happier in that moment, he probably just needs to work through and get used to his new normal, you know, the way that everyone does when there's a new diagnosis, right,

Scott Benner 1:01:42
so I'm gonna argue the other side now. I'm also gonna like, and I'm also gonna say the one thing about Josh specifically, I'm so sorry, that we're bringing them up so much, but I know is that I don't think that your description of what I was talking about is commensurate to what is happening to him. Like you're saying, like, what you said was a couple of times, I let you say it a couple times, to be sure that's what you meant. Josh to be a little happier, and his kid gets to be sick. Like in that. I feel like Josh was at a tipping point, like, emotionally. I'm not just saying that like Josh's day was a 97. And it got to be a 99. Because he let the kid have a cupcake. I think Josh's day was a two. And I was trying to keep Josh from like, running off a cliff. Like with with what I said, and I don't know that I even was, I don't even know that I was talking about the cupcake. I think I was like more bigger picture saying like, man, like, you can't stress this much about this thing. Like it was it's it was burdening him. Yeah, you know what I mean? So that's that. Now the other side of it. I think you've listened to this podcast long enough. I'm all about setting up good examples for people. And I'm all about the long game. And I definitely believe it's setting up, you know, a structure for your daughter for Joshua son or for anybody else, where the expectation is, you know what I might end up at a birthday party, I just don't eat cupcakes. And that's that, you know, I bring my own thing, or I wait till later, or I pick around, I know what I can have in a party that will help like, I hear you like long term health is super important. Their kids, they're impressionable. Now, this is your chance to put them in the best headspace that you possibly can. I mean, I think you understand, I completely agree with that, right? Yeah, yeah, I still probably give that kid that cupcake. And I know those things seem completely incongruous to you at the moment. And I'm not in that situation. So maybe I'm just flat out wrong. But I see why you shouldn't. I see why you don't, I see why I shouldn't have said it. And I'm just trying to say, like, real world, I still don't know if I was in his situation, if I wouldn't make that concession to try to get to a better place. Because I don't know that he's and I think

Jen 1:04:05
the important part is like, just how you said if you were in his situation, so I think in certain situations, obviously, you know, survival, you know, so if you're at such a point that, you know, your quality of life is suffering now, instead of the risk of suffering or someone else's health suffering in the future, I mean, you got to self prefer, you know, preservation and do whatever you need to do. Right. So if you say with that disclaimer, I think that's one thing. Just, you know, I didn't want someone to catch on to it and be like, yes. And I also hate that we're reinforcing everything about gluten with stereotypes and like pizza and cupcakes, because I think that's like how people think like, Oh, you just can't have the cupcake. You can't eat the pizza. But we're just using that example because it's something that everyone knows. Yeah,

Scott Benner 1:04:53
right. Well, it's interesting even with that, so it's interesting to listen to you. Be protective. Have the conversation, like, because when you really stop and think about it, I was having a conversation with Josh, and I was speaking to Josh about his specific situation, you applied it to your situation. If you and I were having the same conversation, I might have said something completely different to you, because your situation would be different. I think it kind of lends to how personal Podcasts can feel. You know what I mean? Like, I'm talking in your ear, and, you know, it's, it can feel like I'm talking directly to you. Like, if you step back a little bit, you know, I wasn't talking to you when I don't. And I would say that, I don't know how many people heard it and thought, Oh, silly me. I've been Feeding My Kid gluten free all these years, I could just I don't think I talked to anybody who's gluten free. And eating a cupcake is what I think I'm trying to say. But I can see the concern. And I do think the concern is rooted in where you are in the journey. To some degree. Maybe I'm wrong. I'm not sure.

Jen 1:05:59
I guess the other thing is, even if it's not, you know, so the people that are gluten free or dealing, you know, not dealing, I guess caring for someone that is gluten free. It's it's hard to not have people understand, you know, like that don't have a gluten allergy or gluten allergy or, you know, celiac disease to be like, you just kind of seems like it's a pain to everyone, you know, like, you go over their house, and they have to have this and you have to ask these questions. So I think that's what it is to so even people that are listening, they're like, Well, why can't they she could just have a cupcake. Sometimes, you know what I mean? And, and, and that's the other part of it, which I'm saying more like, socially, that bothers me about celiac. And it's not something that I hear people talking about a lot. Until, it seems like it's no big deal until you have to like, find out what's in everything. And then someone that has, it will be like, oh, yeah, it's really bad. It's worse than type one diabetes, because you have to do this and you can't compare diseases. I don't agree with that all like the whole statement. I just said, like, I would never compare diseases like that. I'm just saying that, like, it feels like almost like when you have a kid and you don't really hear about how having a kid is so hard until you actually have a kid. And then everyone's like, Oh, yeah, like see having kids really hard. I don't know, it's like, are you so I just wanted other people that aren't in aren't, don't have a diagnosis or, you know, don't have someone they care for, to know that it's not just something that people that with celiac, if they are actually, you know, taking they don't have like, a mental health problem that they're trying to overcome? Or, you know, if they're in a good place, like it is serious that you can't just make exceptions sometimes. Yeah.

Scott Benner 1:07:33
Oh, no. 100% like to be, you know, again, was there a lot about clarity here today? Yeah, I hear your point. Like, there isn't a world where somebody could like six months from now be in a situation and that kid gets brought to their house and the parents like, hey, look, the kid can't have gluten. And you're worried that that person like, you know, I heard on a podcast like six months ago, yeah, like a cupcake if you wanted to, and you know, like, and then they, they have that misunderstanding that makes it more difficult for you, for your child for everybody. And I see that correlation, you're drawing between, like people not understanding things about other diseases, diabetes as an example. And they, they also don't understand about gluten, or people who even had the feeling that honestly, you said you had probably seven months ago, which it just seemed like a kind of fufu thing that fancy skinny people talked about wasn't real, you know, and now you know, it's real. I hear you get I mean, I listen, no one should. No one should be just like, assume they know something about your life. And, and not get the details before making some sort of a decision or saying something crappy to other people. But I mean, we know it happens all the time, like just this conversation, to me is somewhere between the way things should be the way things have to be, and the way things are. And, you know, it's a, it's an uncomfortable mix, sometimes of how you get to these understandings, because you're going to meet, you're going to make a small group of friends who really understand your daughter's celiac, and they're going to, like, earnestly take care of her. And same with diabetes, and there's still going to be people who don't understand and you'll be surprised some of them are going to be in your family, you know, and you're gonna end up at Christmas dinner with someone's like, just give it to her Christmas, you're gonna be like, great, thanks.

Jen 1:09:24
Maybe I was that person, you know what I mean? So that's why everything that you just said, like, last three minutes, is exactly what my point I think was most important for me to have said, because, you know, that just completely summarizes how I feel and what my biggest concern about that comment was, like, you know, I don't even know if like the risk of cancer which is a very real terrible risk or you know, all the other things. We talked about autoimmune diseases, if that was what I was most concerned about, or if it was people just not understanding why I have to do this and what I'm trying to protect, you know, and, and everyone that has celiac,

Scott Benner 1:09:56
well, you did a really wonderful job of speaking for yourself and I really appreciate it I would like to take these last couple minutes. If you have a couple extra minutes to congratulate each other, then I'm going to tell you why. Because we ran into a situation where I said something that you were very much like, Whoa, what the hell, right? And instead of running to the internet to cancel me, or instead of yelling at me, or instead of just being angry, or whatever people do when they see something that they don't immediately completely agree with, you reached out like a human being. We had a lovely conversation online, we set this up immediately to do, I was right away like Jesus, like, is that real? Like, I didn't know that. You know what I mean? Like, like I right away is like, Oh, let me make sure I understand it bigger picture. And you've now colored how I'll talk about this going forward, you know, but in fairness, I've had a number of conversations with people with celiac, no one's ever really brought this up before. And maybe that's just a, you know, an implication of them not even being educated well. And so I'm, I'm super grateful for it. What I'm trying to say is that without this conversation, without me saying something that needed to be clarified without you clarifying it, without being, you know, vicious, you know, which happens online all the time, we actually did a good thing, right? We had speech, it wasn't perfect, we made it better, that's going to help people moving forward, instead of just saying, the guy on the podcast doesn't understand celiac. I'm not listening to this anymore. Or, you know, I'm gonna make sure that my friends don't hear this or whatever. We just actually, like, talked about it like, people. It's nice. Yeah,

Jen 1:11:46
that's great. Yes, yeah, I had a professor once that told me that, you know, there's two reasons that disagreements exist. And it's misinformation, or differences in value judgments. And that's really like the two things that it comes down to. So that's kind of the approach that I tried to take, when I hear things is, you know, having a conversation and saying like, Okay, does this person really understand, like, what the facts are? And then if not, then I'll try to provide some information. And, you know, after I provide the information, difference in value judgments, that kind of comes down to the other part of the conversation you had with Josh, you know, his mental health may have been more important than that pressing issue at the time, and that's where your advice came in. So I think that's a good thing to keep in mind. And I appreciate how you received the information, you know, and so I reached out,

Scott Benner 1:12:32
I was really grateful that you reached out honestly, in my mind, Josh, somebody brought this up to me recently, and I can't remember how they, they talked about the way astronauts solve problems. And I have to find it somewhere like because every I think the the, the example was that everything an astronaut deals with is trying to kill them. So you eliminate the things that are trying to kill you. And I think my brain works that way. So in my mind, I definitely want Josh's kid to be okay, health wise, and I want them to get in a good pattern. And, you know, raise the kids so that he's doing the best things for him. But I was sort of like in that spot where like, if Josh doesn't put on his oxygen mask, they none of this is gonna matter. Like that. That's sort of like how I saw it in the moment. But I'm grateful that you came along with the rest of the information. I wish it I wish I would have known in the moment, and I'm glad to know it. Now. I just think that aside of our conversation, you know, I also wear another hat where I oversee a really large Facebook group. And what I noticed most about when conversations go well versus when they go poorly. Usually when they go poorly, someone involved. I hope this doesn't sound pejorative. Seems like they want to be upset. You know what I mean? It's like, ooh, finally, someone said something wrong. I get to let out my vitriol right now. I can be venomous and angry. And and it's absolutely, I'm okay. Like, I'm justified doing this because they're wrong. In Yeah, you know what I mean? Like, you didn't have any of that.

Jen 1:14:13
Totally not what I was going for. Yeah. Right. So I don't think that's, you know, maybe people need an outlet. That's a good outlet for some people, but it's not, it's not a really great way to be heard or share information, you know, so

Scott Benner 1:14:26
they struggle for a walker mask, or something like that, instead of yelling at people online.

Jen 1:14:31
Oh, God, now my mom can't listen to that she

Scott Benner 1:14:32
can I'll blur you bleep it out. Just for your mom. No, I'm gonna bleep it out just for your mom. That is swear to God.

Jen 1:14:40
Don't worry, you have a cigarette. I'm 40 years old and never admitted to smoking a cigarette.

Scott Benner 1:14:46
So you're 40 and there's something inside of you. Right? And I was like, God, my mom's gonna hear that I had a cigarette.

Jen 1:14:51
Yeah, and she's upstairs watching my kids. What do you and I married?

Scott Benner 1:14:56
Again? What do you think your mom's done that you don't know about?

Jen 1:15:00
I don't want you to think about I think I know.

Scott Benner 1:15:04
At the end of the recording, will you tell me if I shut it off? No comment. I'll never meet your mom. It's safe tell me anyway you might need her would not be hilarious. If I met her. I was like, Oh my God, you're Jen's mom. And I got real read my face

Jen 1:15:20
your voice and should be like, Scott.

Scott Benner 1:15:23
Thank God, He knows what I did. Alright, well, I really genuinely appreciate you doing this and taking the time. Thank you very, very much.

Jen 1:15:31
Thank you. Thank you for having me. Oh, it's my pleasure.

Scott Benner 1:15:43
Obviously, first, I want to thank Jen for reaching out to me for coming on today for being so eloquent about celiac. And for telling her story. I'd also like to thank the Contour Next One blood glucose meter for being a sponsor of the Juicebox Podcast. And I'd also like to remind you to go to contour next one.com forward slash juicebox to check out that mighty little meter. That really is terrific. Thank you so much for listening. I can't tell you how much I appreciate it. There's a little more after the music, but then you can go on with your day

alright, real quick, looking for the diabetes pro tip episodes there diabetes pro tip calm Juicebox Podcast calm where they begin at episode 210. In your podcast player. Are you listening online right now? Please find a audio app and subscribe there. Are you listening in audio app but you aren't subscribed or following the show? Oh, you're breaking my little heart. Please subscribe and follow? Are you looking for that Facebook page? It's called Juicebox Podcast type one diabetes, a private Facebook group with over 23,000 people just like you talking about diabetes. Joshua's spoken about in this episode has been on the podcast twice once on episode 435. In an episode called Josh has all the fields and again in Episode 623. Josh has even more fields and that is the episode that was referenced today. If you're interested in going and checking it out. It's right there in your podcast player. I'll be back soon. Thank you so much for listening.

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#642 A Mother and Son Story

Joe has type 1 diabetes and he's here today with his mom.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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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 642 of the Juicebox Podcast.

On today's episode you're going to hear three voices mine. I'm Scott, Marilyn. She's Marilyn and Joe. Marilyn son, Joe has type one diabetes. Marilyn reached out to me a long time ago to get me to come speak at something in Manhattan if I'm remembering correctly on long, I don't remember exactly is a long time ago. Anyway, we've been in contact a lot since then I've gotten to know them, and I wanted you to hear their story. Please remember, while you're listening today 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 healthcare plan. Or becoming bold with insulin. Or you from the United States and have type one diabetes or care for someone who does perfect. You are eligible to join the T one D registry and take their survey. T one D exchange.org. Forward slash juice box head over there. Answer the simple survey doesn't take long I swear like less than 10 minutes. You're going to help people living with type one diabetes and you're going to support the Juicebox Podcast p one D exchange.org. Forward slash juice box. This episode of The Juicebox Podcast is sponsored today by Omni pod makers of the Omni pod dash and the Omni pod promise to things that I will tell you about later in the show. For now, try hard to remember this link Omni pod.com forward slash Juicebox Podcast is also sponsored by touched by type one. And guess what? Touched by type one has a big golf tournament coming up on Saturday, April 2 in Orlando, Florida. Would you like to register? Would you like to learn more? You can at touched by type one.org. Okay, we're going to get to the show now. But just remember there are links to the sponsors and all the sponsors in the show notes of your podcast player. And it juicebox podcast.com. I don't usually say that here. But I'm enamored with how my voice sounds right now. So I'm just looking for reasons to keep talking. Your comms Marilyn, and Joe.

Marilyn 2:34
My name is Marilyn. I am a mom to two kids. My older daughter Jenna is 22. My son Joseph is soon to be 19.

Scott Benner 2:45
Well, happy birthday, Joseph. How are you?

Joe 2:47
Thank you. I'm good. I'm Joseph, one of the two kids and also the diabetic. How old

Scott Benner 2:54
are you and you're diagnosed? Nine years old? Nine. Okay. Wow. So that's a happier life. Yeah, okay. Marilyn, I feel like you and I met when you sent me an email and tried to get me to come to New York to speak at something. Is that right?

Marilyn 3:10
I did. That is one email that I reached out with. Um, I think my first email was when I first found your podcast and felt so relieved that I found something that made sense to me. And you answered and then I was even more shocked because I thought Wow, he really answered. He's a real person. This is this could work. But then yes, I did try to set something up here on Long Island.

Scott Benner 3:42
Let me ask you. The first time you reached out how long ago do you think that was?

Marilyn 3:47
That was I found I started listening to the podcast in July she's gone again. Yeah. I don't know what she's doing.

Scott Benner 4:00
I don't know that she's doing anything she on like something wireless. She doing it through a phone or something like that.

Joe 4:06
Now she's on her laptop. Laptop plugged in headphones. I made it foolproof so she couldn't cut out.

Scott Benner 4:13
Do the fun thing is she's talking right now. I know. You're back.

Marilyn 4:19
You've been back. Yeah. I just got a message that my internet connection was unstable.

Scott Benner 4:24
Okay. Is there a spot in the house? Where she could walk a little closer to the router? Maybe or something like that? Yeah,

Marilyn 4:30
I'm gonna try.

Joe 4:32
No one's there. Go to the living room. People are here. What people? I'm out of ideas. This older daughter.

Scott Benner 4:42
Okay, this older daughter who escaped diabetes?

Joe 4:44
Yes. The Lucky One. Now she's not home.

Marilyn 4:48
She's not home yet. My husband's home. Oh, he should get a little soon to be leaving, right. He's on vacation this week. Oh

Scott Benner 4:54
my goodness. We need money being made here. Right. He can relax when you Leave him and not before.

Marilyn 5:01
I really gave him the right not to come in the room. No matter what. How's that a little better?

Scott Benner 5:08
We'll find out. So okay, July of when did you find the podcast? 2019. Oh, okay. So see, the reason I find that interesting is because, you know, we're really only talking about two years, but Josef's had type one for nine years. So right where you twist it up for seven years,

Marilyn 5:29
pretty much. Yeah, I knowing at the time, I don't think I thought that because I was listening to our doctors and I thought I wasn't someone, like when I listened to the podcast now i and even your story how you thought, you know, this can't be right. There must be more I was to the side of okay, this is what the doctor says. So he's the expert. We, you know, we, we fortunately never had anything in our lives or extended family where we've ever had, you know, chronic illness or something where we had to deal with doctors all the time. It pretty much was like our checkups once a year. You know, my kids weren't really sick kids. They weren't they didn't. Have you read? They were? I just trusted what they said. You were just for the first cup. Yeah, yeah, the first couple of years. It was just like, Okay, well, you know, we go every four months, they would tell me, you know, well, you do want him like, you know, between seven and a half, and we were kind of close, but not really. But he never really, you know, made me feel like I wasn't doing anything, right. Wrong. Okay. So

Scott Benner 6:39
for a number of years, Joseph, you've got like a, you've got an N A one C in the sevens as your kid. And you don't? Do you see anything wrong with what's happening? Are you having issues?

Joe 6:51
No, I had no idea. Okay. All right. And so,

Scott Benner 6:55
now when you figure it out, you figured out you're listening to me, and you're like, there's a different way to do this. And does that panic you then? I mean, when do you get like, when does it upset you?

Marilyn 7:07
Yes. When will I kind of back up a little 2018 was kind of just like a wacky year in our lives. We just had a lot going on. And my husband and I were like all over the place. And we finally kind of like re grounded ourselves. And, and I think, honestly, I think it was just the toll of, you know, me not sleeping for a number of years. And I was just burnt out and it reflected in our relationship and things were just I was always angry with everybody. And so 2018 kind of straightened all that out. And then I kind of realized, I haven't even paid a ticket like not that I didn't pay attention to his diabetes, I was treating it. But I wasn't focused on it. And I kind of got to the point that I said, This can't be good. Like his these hype can't be good. And I wanted to do something about it. And I literally had thought I was working. My job. I wasn't working through the summer at that point. I was working in a school. But then I had gotten a job where I was working through the summer and I had about a 25 minute commute. And I literally sat one morning and I said, you know I've never listened to a podcast. So I was like, I need some direction. Something like maybe there's a podcast on diabetes. Let's start with that. Instead of looking for a book or whatever I had. No, I never joined any Facebook groups. I I never reached out that way ahead. No one really, in our lives that I could go to. We when he was first diagnosed, we were involved with JDRF. But then truthfully, even Joseph got to the point as he got a little older. He said I really don't want to do these walks. I really don't know nothing against that. But no, so I didn't have any. I'm sorry.

Scott Benner 8:58
No, I was gonna just I want to before I move forward, Joe, I've called you Joe with Tom. But now your mom's calling you Joseph and it's panicking me but you want to call Joe right?

Joe 9:06
You can? Yeah, Joe is fine. She's called me Joseph forever, no matter how much I tried to say call me.

Scott Benner 9:12
Listen, when you name your son after the Lord, you want to reuse them as much as you can. Okay, so that's one way to look at it. Yeah, no pressure there at all. Joe? Just No, not at all. Please unite the universe. Could you please.

Marilyn 9:24
That's coming from an Italian family when you have 17 Joe's and Joseph's it's kind of like you're trying to you're gel. You're Joseph here. Yeah.

Scott Benner 9:32
It's Michael in my wife's family was always one name. Right? We'll go somewhere and everyone will be named Michael except the people in my family.

Marilyn 9:40
And the whole room turns just like, I don't even know

Scott Benner 9:43
these people need, they need nicknames. And they all have because of it. You know, it's funny, you name your kids something and then you end up calling them something completely different because it's, and it's not the point. The point is this Joe, so you're just rolling around, you know? 910 11 1213 In, what do you do? Are you even aware of your a one sees other than I see, you're a really kind of grounded person. I, Joe and I have spoken a number of times, so tell me what it's like to go into those appointments as a kid, are you paying attention? Do you really care? Like, what is that, like your doctor's appointments?

Joe 10:21
I, I hated it. Not as much now cuz like the control I have. I'm kind of, like, um, I'm not scared to go to them anymore, because I know what I'm doing. But as a kid, um, I always just saw my parents did felt like, like Alien, where I would just lay on a table, and they would examine me and like, check me and like, they would check like my site points, like, where are you doing your shots and have to, like, feel where you're doing your spots to make sure it's not irritated? Like, it would just freak me out. I felt like an experiment. That's what I would always tell them.

Scott Benner 10:53
So it's just an uncomfortable situation. You're not taking anything like you're not leaving and going, Oh, here's a useful bit of information. I

Joe 10:59
have no, okay. It was just a time where they would look at me. And then they would like report to my mom. And I would have told us that we just had to be there, you know,

Scott Benner 11:07
did it feel? Did you have any feeling of Pass Fail? Or did you not think about that deeply?

Joe 11:13
Not really, now.

Scott Benner 11:15
Okay. All right. How about you, Marilyn, did you feel pass fail, or they'd hadn't, you didn't know enough about it back then to think you were doing good or better, worse, or anything?

Marilyn 11:25
I did, um, when we were initially, he was initially diagnosed. And we started I remember, in fact, it's funny. I, you know, pulled out all my notes from diagnosis I had I saved everything and getting ready for the podcast. I said, Well, let me go over my dates. And you don't know what's going on. And when I looked through the notes that they gave us when it was I don't know if it's comical or sad, but I have a whole page of his a onesies that I would handwrite and binder notes and I had to write down his blood sugar's all the time we tested and all I have is a note that says a one c takes me up to seven, excellent seven to seven and a half. Very good. And that was my barometer like that was what I so as I look through all my notes, like next to some I have sad faces, so my happy faces, but to look at them, it's. So I would feel like I would feel like we waited four months. And then I got this number. And now I'm like, I suck at it. Like, what did I do? But

Scott Benner 12:32
were you? Were you making any purposeful decisions?

Marilyn 12:35
No, I didn't know. I can't explain it. I didn't know to kind of take the reins and just say this is there's got to be a way to deal with this. You know, the ironic not that it's ironic. But my my brother, he's nine years older, he was diagnosed in his early 40s as a type two, you know, and he didn't live he lived in Jersey at the time and not that we're not close, but we don't talk on a daily basis. It's you know, just Yeah. Are you know how it is over? Yeah, and, and I remember hearing Oh, Mark, you know, if they say he's tight, too, but he's still young. So he was the type, I'm not taking any PII. I can do this with diet and exercise. And about a year and a half later, he was type one and started you know, and then he ended up in the hospital. He lost like 30 pounds, but because I remember my parents going there, but because he was so out of touch. I didn't even know enough. Like nobody talked about it. That's how, I don't know. That's just how my family was. So

Scott Benner 13:39
your brother, your brother was misdiagnosed as a type two for about a year.

Marilyn 13:42
Absolutely. Gotcha. Absolutely. I know that now. Um, I didn't know that then. And it was kind of like, Is he okay? Yeah, he's okay. Okay. You know, I was like, Okay, so he's on it's okay. Joe. You know what that meant?

Scott Benner 13:56
Yeah. Any chance show that he's an uncle that you look like? facial structure, height, body style? Yeah. Nothing like that. I was just wondering, Okay. I'm always looking for like little like, like connection points when we're having these conversations. So, Joe, if I told you your mom is a verbose email writer, would that surprise you?

Joe 14:16
If you want to tell me what the word verbose means? I will totally back you up.

Scott Benner 14:22
She writes a plentiful li with many words, and goes on. Oh, yeah. This makes sense to you. I told you I totally talk that way too. Oh, my God, man does mount if you passed away right now and they were looking for your writings. I may be in possession of some of them.

Marilyn 14:41
I am I am I do. It's funny. I often find I get my thoughts out better on paper than verbally. Scott, you should see your text

Scott Benner 14:51
does understand the brevity of

Joe 14:53
she texts in chapters. So like, I'll be out. Whether it's my girlfriend, my friends. Whatever. And I'll get a text and it's like high, your 260 Or no, not even that high, but really high your 182. And then like, you should hit like return and make a space below and then there's another line. And then it's like, I would suggest taking this amount of insulin. What did you eat? Did you do this? What did you eat for breakfast? What's on your kit? Did you check your kid? Your sensor could be awesome. It's like eight lines. When you possibly be doing

Marilyn 15:24
when you're, when you're giving my eulogy, you will say how your mother cared?

Scott Benner 15:28
I bet you I bet you will say my mom could never figure out texting

Marilyn 15:33
you right? He didn't. He would always get mad at me because I would use the dot dot dot after I'd say a statement and he would yell, he would say to me, that's not good. Like, I'm just, I'm just like giving a pause. And you know,

Scott Benner 15:49
I get pressured i do i get pressured for using punctuation Well, in texting by my children. And my son does not like it if I call him and I don't FaceTime him. Like, if I FaceTime him, that's okay. But if I call him he does not seem to. He does not seem to like talking on the phone.

Marilyn 16:05
Really? Yeah. Because they don't realize that's what the phone is for.

Joe 16:10
I don't care about talking on the phone.

Scott Benner 16:12
Well, yeah, okay. See, look, everybody's got their thing. But anyway, you wrote some really long emails, but I want to say something. I apologize. Don't apologize. As we're joking about them. They were also very cogent, and thoughtful. And they got me to write you back. Because I've received long emails that ramble and I just kind of pretend like I didn't see them. Delete. I don't know what I'm gonna do. Like, I think part of me it's like, am I about to replied to like a person who's in the middle of a psychological breakdown, I'm not qualified to help with, and I probably was, but you are, but you're seemed manageable.

Marilyn 16:47
I knew I was crazy.

Scott Benner 16:49
And, and I knew I was crazy. I don't think you can be crazy. And no, you're crazy. But no, I don't know, the technicalities. I also don't think the word crazy is acceptable any longer. But I'm sorry.

Marilyn 17:01
But one thing you will learn about me, I am not politically correct my

Scott Benner 17:06
mouth. And if you don't know how to text, I'm pretty sure you're not gonna know the the wokeness of culture. So. Anyway, so then, you know, so then we start talking more about like, I guess you were involved with JDRF still, and you were trying to get me to this event. And I kept telling you, I don't think this is going to work. I don't think they're going to want to do this. And and you were like No, no. And you were really persistent. I just thought like, Okay, well, you know, let her go. Like, maybe she'll work. And, but at the same time, we started talking more about like management stuff. And Joe, you and I ended up on the phone together for a while, right? Like I basically gave you a private talk. Yeah. What was that? Like? Like leading up to it? Were you like, Oh my God, my mom's gonna make me talk to a stranger on the phone. Or

Joe 18:01
I don't really mind talking to people. Like I was pretty. That wasn't the problem. I was just like, Who is this guy giving me advice on my loans? Like, I found this podcast, and she's like, I'm gonna have this dude call you and he's gonna tell you what to do. Like was just joking.

Scott Benner 18:19
But your father, do you go to your father and go like, Was she the only one? What happened? How did we end up like this? What did you do?

Marilyn 18:29
Well, he's forgetting after I found the podcast in July, I started following your Facebook group and your your page. And within weeks, I see a post that you are going to be local to me at a church in Pennsylvania. And I thought, oh my god, we're going and, and that's what I had said to my husband. I'm like, listen, I found this guy. I found this podcast. He's not he's on, you know, our coasts. It's not for I'm like, you want to go away for the weekend? And he was he was like, All right, he's like, we'll get a hotel. It'll be like a getaway anymore. Like, we're gonna stick with this thing all day. And we're gonna learn how to do this. So I kind of got you know, he was on board I guess because it was it made away and, and I came to see life. So what and I remember saying to Joseph, listen, I found this podcast like, you know, you're welcome to come if you want to learn he's like, Oh, you go he's like, you just come back and tell me he said

Joe 19:29
Yeah, I was just like, let me know

Scott Benner 19:30
what you learn to things around that first of all, I was getting ready to do like, I was getting ready to do like nine speaking events in nine months. And I just like almost like you know, you Chris Rock or roll into a comedy club or 10 people are because he needs to brush up I was like, I gotta I gotta do a practice one and get myself rolling again. And and I wanted to do and then someone online said like, I'll find the space will you come? Like Alright, well, that's good. I can kind of like shake the rust off and I And also when you're doing these things online with people, like a lot of people say things that never come true. And you just learned to say, that would be nice, thank you, and then you don't hear from them again. But when someone says to you, I think I can get a space. And then suddenly, like, 12 hours later, like I have the space. And I'm like, Okay, well, I guess I'm doing this now. And you know, and then I find out someone drove from Long Island. And my understanding of Long Island, which I've brought up on the podcast a number of times, is that my son used to have to play baseball once in a while, way out on the island. And all I know about it is I hate driving there and driving back from there. Ben told me that your first deal? Yes, that's all I know about Long Island is that like, it is a horror to drive through. And and, and so when you came from there, like my frame of reference was, these people really wanted to do this, because that is not a pleasant commute, you know, to get here. But the other part of my thought, based on our brief conversation just now was that I completely understand how Joe must have felt because I'm that person really like? It's, it feels a bit incongruous if I'm being honest, who I am with how I think about the world, because if I wasn't me, I would think this situation is completely ridiculous. Like a, a person with a podcast, talking about a health thing that somebody drove to and made their kid call somebody on the phone like, I would, I would, if it wasn't me, I'd step back and go, you're out of your mind for doing this. So I only don't feel that way. Because I know the truth of it. But how are people on the outside of me supposed to know that I'm not a lunatic?

Marilyn 21:43
You know, what really did it when Joseph started. He had after like, a few years of diagnosis I got he started a diabetes camp in the summer, which I really it was out on the island. I really wanted him to go he didn't want to do it. The first, I think two years. And then I somehow I don't know, I got I bribed him. I don't know, I promised something. I got him to go. And they each summer would have you know, different activities each day. And then they would have reps come out, and you'd get samples of things or pamphlets. And that's how I learned about the Dexcom. And when I came home with it, I was like, What in the world is like I never even thought to think of technology. I knew he didn't want to pump. Like I knew about a pump. In the beginning. He learned about that. And he never wanted it. And I always felt like you know, I'm not going to force him to do it. You know, he got handed this deal. I'm not going to force him to do that. If he didn't want it. I just wasn't in that headspace. So when I learned about the Dexcom, that was one thing that I thought, Oh, my goodness, this is amazing. You know, so we did start him. He started on that in. We're just trying to figure that out. Right before it was 2016.

Scott Benner 22:52
Did your to bring that? Did you bring that that pamphlet home? Because you felt like you were supposed to or because you saw it and thought okay, I would actually like this. To be honest, I probably threw it in my backpack. And she found I love the difference between what happens and what people's parents think are happening. Right? He probably just had to bring it home in his heart. Scott, he knew deep down that he wanted to make this.

Marilyn 23:15
Yeah, no, I know, Joseph better. And I went to my doctor, when we went, I said, I want that, you know, and we're gonna do and I called the rep we got a rule set up. And when I saw that, you know, we would check. I mean, I was like, you know, when he wakes up breakfast, lunch, dinner before bed 2am for years. And when I saw what was happening in between, I remember I was I it's like embarrassing to say that I was like, oh my god, I This is impossible. Like, he goes up and down this nut. And I remember saying to the Endo, this this is happening. Like this isn't good that you know, so if I check him three times a day, and his number happens to be 160. Great. But if it was 330, you know, and he was like, Well, you know what he didn't? He didn't say like, you really want to try to work on it. Almost like, yeah, that's what I think got me after it took a while, but I was like something's wrong. Right.

Scott Benner 24:18
I think when Dexcom I'm sorry, I think when Dexcom first came out, I think that it showed it showed it shone a light on a lot of endocrinologist, they, they I bet you they didn't like it at first, I bet your first they looked at these charts and when people are gonna ask questions about them.

Marilyn 24:35
Right. And, and I have to say we, we've had the same endocrinologist from when he was diagnosed. And I like him and we got along with him and I and I have nothing against you know, I believe he was doing what he was, you know, he's with a big hospital and I believe he was doing what he was taught to huge practice, you know, whatever. But since learning what I've learned and being the way I am You know, now that what I know, it's just a shame and it really does fall in the same. You know, I mean, I found in my notes I told Joseph last night, I think my notes said if at bedtime and 2am over to only correct if he's over 250.

Scott Benner 25:18
I was like, mortified, like now it's like, yeah,

Marilyn 25:21
right, exactly. So right. So the thought of what I did, that's how that's how I took it. Like that was a that put me in a bad place to for years of like, what am I doing to him? What did I do to him? I wasted these years that I could have been, you know, he could have been healthier. He could have been like, what did I

Scott Benner 25:39
do? Even earlier in your conversation? You said something that gave me that horrible, wasted time feeling? Yes. And chose You're still young. So it probably doesn't feel like this still. But at some point your life you'll start thinking about like, time is gone. Or I've made a decision that I can't fix. It's a horrible feeling as you get older, when it relates to health or your children. It's worse. You know, like, when you wake up one day, and you're, you know, you realize your 16 year old is a is a pompous ass, and you go, Oh, God, what I do, it's, it's too late. You don't I mean, like, I made decisions when the kid was seven that led to this. And now I, what do I do? Like if it's a really terrible feeling? And so, and Marilyn, you're running around being angry, Joe, were you aware she was angry? Or did you just think she's crazy?

Joe 26:31
She's crazy. I think she was angry about something. But I think I was too young to understand why.

Scott Benner 26:35
Okay, did she seem angry at your dad or angry at you or angry in general?

Joe 26:40
Um, I think she was angry at me for reasons that I couldn't understand. And like, even when I say that, I don't need me. I think she was just mad at the situation. And the fact that she, like you guys are saying she did feel like she put me in harm's way for so many years. But I didn't think that way. I just thought, take the shot. Take, like, check a blood sugar and move on with your day. You know,

Scott Benner 27:05
but you felt you felt that anger coming towards you?

Joe 27:09
Yeah, I just didn't know why. Okay, so I look back. I can see it really wasn't me. It was the situation right.

Scott Benner 27:15
Now. Does that break your heart?

Marilyn 27:17
Yes. Because I know I I was angry. I know. I was so it affected. I think plus, I kind of I am the sole now that Joseph older it's kind of like the two of us, but I was the one that like took the reins with this. And it was solo act. Like even when he was first diagnosed. I gave the shots. I like it just was the way it was. Um,

Scott Benner 27:42
what do you do at school? Joe? Who, um, where? How'd you inject the school when you were younger? Did you do it?

Joe 27:50
If I remember right? I went to the nurse and I did.

Scott Benner 27:55
You did it at the nurse's office?

Marilyn 27:56
Yeah. Okay. All right. Well, well, once you started doing your own shots you did but in the beginning, he was only on short acting and long acting twice a day. So he had to eat. Exactly. You know, like we had to give him exactly the same carbs all the time because that's what they told us to do.

Scott Benner 28:16
Joe started on regular an MPH Wow. How far out on that island? Do you live?

Marilyn 28:23
Clap right. Being clear. I remember rolling the bottle you know,

Scott Benner 28:27
nine should have been nine years ago.

Marilyn 28:31
Yeah. Oh my gosh. Humalog and humulin and pH and we gave it at breakfast twice and dinner twice. So he was eat. I mean they it's funny. I don't even know. I mean I'm sure Joseph remembers it because it was horrible. Like in the beginning I remember them telling us well you know if he's hungry because he had to eat but what I gave you know for the insulin we gave them so they never said like if he wants a snack just give him It took about a year six months a year into my notes where it was like it'd be once a snack give him a unit and let them have a snack. So they would tell us you know he can have like jello and whipped cream and grown Do you remember how many cups

Joe 29:13
I would sky? I would like throw up with cream. It's I don't eat jello to this day because it's I'm all I ate.

Marilyn 29:23
I'm mortified that I can remember saying if you'd like I'm hungry as a kid I'm like you want a cup ready with you want a couple isn't bad.

Scott Benner 29:34
No one in the history of the world has ever said you want a cup of ready with

Marilyn 29:39
like that'll fill you boy underweight to begin with. You know,

Scott Benner 29:45
would you like a bite of dusty air Joe? Bye by the way, I got no carbs. You said a minute ago like I'm sure he remembers that because it was terrible. And I thought I bet you that's how the girl I lost my virginity to talks about it. She remembers that.

Marilyn 30:09
Oh, oh, it's well, that's

Scott Benner 30:13
just me. But here's the interesting thing, right? Like you're involved and interested, you're going to doctor's appointments. And you know, I mean, you're trying to be in the community, you're going on JDRF walks and getting stuff, he's going to a camps and stuff. And so, I'm gonna probably come off poorly for a second here to some people, but you're doing all the things that the system wants you to do. Mm hmm. And it was but it means nothing valueless to you. Absolutely. Congratulations.

Marilyn 30:42
Absolutely. Okay. That's what, that's what when I heard when I found your podcast. At first, I literally because I didn't even know I was I don't even know how to download that podcast player. I don't even know how to do that. They never had done it. And I just Google, you know, I typed in the search, and I there was another one or one or two that came up first. But then I saw juicebox. And I just thought, I'm like, Oh, that's cute. That's a cool title. Okay, and I hit that. And I listened. I went to the beginning, because I didn't think like, let me do the most current. And I listened to the interview with Adam from American Idol. Okay, and then I listened to a few others. And when I heard you talk about the numbers in between and the depths, and bringing it down, and it literally I was like, That's it like, that's what I've been saying. I've been saying this shouldn't be happening in between checking on a meter and, and that's when I knew. I'm like, this is this is something this is this is it. I can't even explain to you how happy I was and how relieved so when you say you can't believe that people, you know, that you do a podcast and and people get such value out of it. It's because sadly, I guess, and maybe back then there maybe now there are more doctors that see the things you see and say, but it wasn't around. It was like I struck gold. Nobody's and then when I found out and then I was like who is this guy? And then when I found out you know, like you were reeling on the East Coast. I was like, oh my god, like, you know, I could drive to his house and find me right to my email.

Scott Benner 32:26
There you go email better at it. Yeah. Plus, I sound enough like you that it's, you know, probably comfort. Yes, yeah.

Marilyn 32:33
Yes, they do get your humor, which makes it and that was the other part of it. It wasn't boring. And it wasn't like someone was preaching to me. And it was entertaining. Yeah, but not but but and. Oh, I'm telling you even now. I don't know.

Unknown Speaker 32:47
But I keep waiting.

Marilyn 32:51
It gets me happy. If I I don't know. What would have happened. I really don't. What I don't even want to think that I still would have been that.

Scott Benner 33:00
Let's go over it. Oh, man. Oh, let's go over. I saved your marriage. Right? You did? Yeah. Okay. I probably saved your kid's life. Probably right.

Marilyn 33:08
I made me a nicer person.

Scott Benner 33:10
I made you a better person.

Marilyn 33:12
I'm a nicer person now.

Scott Benner 33:14
Super. Just I mean, listen, whatever that 10% is you send to the church, I think just send to me for a while. And then we'll be fine. We'll call you coffee. I'm teasing please. No one.

Marilyn 33:23
I was so happy you did that.

Scott Benner 33:25
Oh my god. That freaks me out. So Oh, like everything about my life makes me gives me what they call douche chills. I don't know, Joe, if that and I don't know why. You're saying that. It's uncomfortable.

Marilyn 33:36
It shouldn't be

Scott Benner 33:40
that you think that because you had the experience. I mean, listen, I was just being you know, I was just joking a second ago. But at the same time, if we step back and act like adults for a second, a podcast did those things. It's a real thing. You know, like, I am a good guy. Like I did show up at a church in the middle of wherever the hell it was. And you know, and talk to, but you think there may have been 40 or 50 people there? Oh, I

Marilyn 34:03
think you had a little more than I'd say 100. Nice. Crowd.

Scott Benner 34:06
Had a good crowd. We talked to some people help people out. I listen. I Saturday

Marilyn 34:11
on your own time.

Scott Benner 34:12
I'm a decent person. I know. Right? Like, I know my values. And I know my, my goals. And it's just I mean, I'm 50 Joe seriously when your mom says your podcast to a 50 year old like there's a party that goes like chicken a job man like Right? Feel it a little bit, don't you? I mean, you guys are indoctrinated. Now you can't even say anything bad about me. Come on. No, I

Joe 34:41
mean, at some point like yes, I get it where it's like what else this guy had to do, like doesn't want to do anything or like, but at the other point, I get it because I can't really criticize you because one time I remember my mom like laying everything out for me about what your show and everything has done for us. I just sat there on my bed and I was like, So you're telling me this stranger like kind of saved my life? She was like, Yeah. And I was like, kind of did. So I can't really bash it.

Scott Benner 35:08
Yeah, I know. But we were trying to have fun Joe and you wouldn't say anything bad. So now we have I mean, I'm the one left self deprecating humor, and it's too much.

Joe 35:17
I'm still having fun.

Scott Benner 35:18
Good. I, I saw I mean it, Jen. Genuinely. It's a strange thing. Like, I can see that. Yeah. I mean, for instance, like today. When when you and I are done today, my wife and I are going to a wedding. Like so I'm, I'm jamming this in today, because it's my job. You know what I mean? And the three days prior to today, the Monday, Tuesday and Wednesday, we're speaking on Thursday, Monday, Tuesday, Wednesday of this week, in September of 2021. Those three days had more downloads than 2015 did when I started the podcast the entire year. That's amazing. But that's a weird thing to wrap your head around. But

Marilyn 36:06
I can see your point. But I I can also see from when I jumped on board and started listening the growth that you have had and watching it like as a I'm better at your subscriber fan?

Scott Benner 36:22
Um, no. Yes. Oh, I

Marilyn 36:24
I didn't think you were bad. When I started listening. If I when I started listening way at the beginning, it was funny how different you could tell like you had just started. Yeah, no, I think you're much more comfortable. I think you're much more well known. I really do. I it's

Scott Benner 36:41
a big part. I did a podcast this week with somebody else. I was on someone else's podcast, which I don't normally do. But this person really grabbed my attention. And, you know, she asked me the first question. And I was like, there's a feeling inside like you just like, I'm like, I could talk about this forever if I had to, and and try to make it interesting and entertaining. You know that that really is what lacks, like, it's funny. I know other people who have, you know, diabetes, they put up diabetes content. I know they listen to the show, because I put up a topic. And then four days later, I watched them put the topic up and there and so I realize it's being listened to, but they have no real. They're not. They're not I don't know if they don't have substance or I don't listen to their podcast, but what I do know is, is that they don't have the reach. And, and if it was as easy as saying, we'll just do it the way that guy does it, then they would. But I don't think it's that easy. So I do give myself credit for that part of it. I do think there's something about this whole mix of me and my ideas. Oh, hold on. Excuse me, me and my ideas and how I go about things. It does coalesce Well, yeah, but I couldn't you

Marilyn 37:54
have again why? You have a get chatty to reach people to be entertaining to be I don't want to see deep for lack of a better word. But you you you can touch people you can in good way.

Scott Benner 38:11
My pop pop psychology is fun. What do you think? So

Marilyn 38:15
we, I don't want to say we're full. I don't want to say we're fortunate enough because obviously it's your situation and Arden's diagnosis that brought you to to channel it to this. I think you could have been successful, whatever your topic would have been whatever your thing would have been. You could do this with anything. It just we

Scott Benner 38:33
you're making me from it. You're nice, you're making me think I should start a new girl podcast. Show you let me tell you tell you, I've

Marilyn 38:41
heard you say, I would listen to it because I love that show. But I have heard you say that, you know you hope people listen, learn, like absorb. And you know, not purposely move on. But you know, you're here for the people that need to take the tools and the information and go. I took the tools and the information. And we Joseph is better for it. 100 times over, but I don't want to go because I consider this. I consider this part of his treatment. I consider this. Like if I want to know what's coming up what the cutting edge or what might be happening. This is where I go. I don't go to the news. I don't go to the website. I don't go to because your content is interesting. Your content is relevant. It's

Scott Benner 39:29
a timely, it's evergreen. It is. It is Joe Do you listen to this? I do. Oh, well. Thank

Marilyn 39:36
you next time.

Scott Benner 39:39
Yeah, well, I mean,

Joe 39:42
that I understand. It took a little while but I do.

Scott Benner 39:46
So I want to talk about Joe and you and I talked on the phone

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Which time well the very first time. Okay, so was it overwhelming? Or did things make sense? Like I I'm trying to understand, like, come at it from my point for a second. I don't really know you, right? I know your mom like we've just gone over who your mom is, you know, big picture. That's my that's my image of her. i There's a little bit of me it's like oh god, this woman's gonna make her son get on the phone with me. You You know, like so, you know, you get on and in my heart what I'm thinking is there's no way he wants to be doing this. Like, that's no verse thought.

Joe 45:09
I mean, I didn't want to, to, you could say I didn't want to for the sheer fact that, like I've just laziness. But the fact that she was like this could help you with diabetes, I was so fed up with it to the point where like, there would be instances where I'm just like, No, I don't need insulin, I'm not doing this. I would just like, just leave my blood sugar the way it was, because I was just so fed up with like, like, how bad I felt physically. Just how it would do what's worse, the most inconvenient times. So yes, it was weird. But at the same time, I was like, You know what, if this can help fine, because I'm kind of done good. I just didn't want to deal with anymore.

Scott Benner 45:48
I gotcha. I like it when people say this stuff always happens at the most inconvenient times. Because I think when would be convenient for your pump to oddly just stop working right or

Joe 45:57
when you're laying in bed with zero plans doing absolutely nothing for the next two days. And

Scott Benner 46:02
that doesn't that's not well, please make the truth is how often does that I guess if you're young, it happens more often. But I have not your mom and I are like, Wait, that happens to people. Exactly. So So when when we get off that call. How did you feel leaving the call? Do you feel hopeful? Are you a little bit? Yeah,

Joe 46:22
yeah, cuz granted, I think I was at the point where I was where I thought nothing was really going to help me I kind of just have to live with this. But when you said like this works, my daughter's done. And I would hear you on my mom's Show Me on the other podcast, you talked about Arden's numbers. And it helped a lot. I'm hearing the podcast is with Arden, because I just liked hearing her perspective. Okay, I can see a lot of similarities in the way that her I think,

Scott Benner 46:50
you know, her episode, but her episode almost immediately became the most popular one that's been up in years. Really. It blew past like the numbers like usually Dexcom news, like when Kevin comes on, those are usually the ones that reach out beyond my sphere. So I see them, I see them download beyond what a popular episode usually does. And Arden's jumped right past those. That's cool. Yeah, it's an associate. That's interesting. So you feel a lot the way she described?

Joe 47:25
Yeah. Like, I could relate a lot to what she said.

Scott Benner 47:29
Yeah, I think the I had her on because I, in my heart, I think that's how most people think about it. And kids. And I think it's, I mean, adults and kids and with diabetes. And I think that it would be really difficult for a parent who's coming from a different perspective and has different goals and desires and loves you in a different way than you love yourself. Like, I think that they needed to hear that. And part of why I waited so long to put on the podcast is I was waiting for her to get into a spot in her life where I thought she would be really articulate about it. You know? Yeah, I just think that it's, it's not I don't know, like, you know, some people their lives look on Instagram. You can't you can't pretend that that's really what life is,

Joe 48:18
you know, I don't have Instagram, because I think it's dumb.

Scott Benner 48:22
But, but you know that, you know, everybody puts their best foot forward, you know, mostly, and their expectations are big. And I think sometimes around health, a parent can say, well, I've put all this effort into it. I want this kid to be really healthy, we are accomplishing that. The kids just going to keep doing it. And I can't even tell you if Arden's gonna keep doing it. Like we're leaving for a couple of days now. And this is our first time Arden's going to live in this house by herself for almost four full days. Right. And I tried to walk into a room last night, I said, Hey, I need to explain something to you. For while we're gone, and within 30 seconds, she was not listening to me. And there is a little voice in your head that goes, you know, other people would pay for this conversation. And I don't say that I don't say that out loud. I just said, Hey, our interest is really important. You know, like, right, we've been transferring power away more quickly over the last year and even more so over the last three months. And I've let her make mistakes and I've let her live with higher blood sugars and you know, and so that she could have experiences I'll tell you one recently, she had a site that wasn't good. And I said to her Arden I think your site's bad. And she said No, it's my period. And I went okay, I think it's the site right and after about after let them valley after 18 hours I get a text from her I'm paying a lot. And I was like yeah, your blood sugar is high. And she's like, well, that's because of my period I said that's because the site is bad. And so I let it go about 10 more hours. And you know I'm you know her blood sugar Stuck in the 150s. Like, you know, in that range, which I know, must have been crawling. I know some people are like, Wow, 150 Shut up, idiot. But yeah, I mean, I'm a person, I look at a 120. And I'm like, why are we not doing something about this? Like, you know, so I went into her and I said, okay, hey, I'm like, that's enough. Now I'm going to insert some, you know, some privilege here, we're gonna change, we're gonna change your site. So changed your pump, I injected, I made a Bolus through an injection, and I said, I'm gonna have your blood sugar down. In about an hour and a half, it's gonna get stable. I said, we're probably gonna have to catch it on the other side, because you've been high for a while. So I used a fair amount of insulin here. And then the pings gonna stop. And then that all happened. And even at that, a day later, when I tried to tell her something about while we were gone, she was like, Oh, buddy, leave me alone. Right. So that's human nature.

Marilyn 50:58
And you know what, that's the biggest struggle I found that the biggest struggle with Joseph because it's not just diabetes, it's life with a teenager. It's, it's, you know, you're you're doing making those decisions with everything else. They're doing their homework, their, you know, their rules, they're going out. And that's where we got to the point that like when he first spoke with you, you know, I yeah, I totally agree. He was ready. He felt all those feelings and was ready to do this. But It dwindled away a little bit, because I wasn't, he wasn't in a place where he was finally ready to say, Holy crap, I really have to take a hold of that.

Scott Benner 51:36
So talk about Would you please like you had like a reckoning and then you were just like, I forget it. Right?

Marilyn 51:44
Joseph? You me? Yeah.

Scott Benner 51:45
Yeah. Joe, tell me. Tell me about that.

Joe 51:48
You mean, like when I first when I realized like, what what I felt when I realized that I need to take care of this.

Scott Benner 51:54
This time. Right here to me is the whole episode. That's why I had you on so you, you came on the you know, you we talked you understood suddenly things, but that didn't make you put them into practice? Is that right?

Joe 52:07
No, no, definitely not. It had to become routine and had to become something because I knew one way for so many years. I just like do this. I'm alive. Okay. And then. Um, this is this is not long ago. Um, I listened to one of your episodes, I don't remember which one. And I like, ran into the kitchen. You know, I got home from work. And I ran into the house. I was like, Mom, I can have seizures. And she was like, Yes,

Marilyn 52:41
he had no. That was right after we, we finally came to a blow up. And I don't even know if he remembers this was the time I know, it was that like the pivoting moment where we changed, he changed. We just I had my typical meltdowns and breakdowns and fights in this. And I just lost it one night. And

Joe 53:05
because our relationship was not good at all during this now,

Marilyn 53:09
because all I felt like all I was to him was a mother nagging about diabetes. Yeah. And as much as I tried, it was just always an issue because it wasn't controlled. And then I got to the point that I was obsessed, like, if I tell you obsessed, I used to think to myself, like what would i What would I be doing? Well, this time if I didn't have to. And I didn't want him to know that because I didn't want him to think feel bad. But you know, like, if I didn't have to worry about this and read things about diabetes and listen to what would I listen to what I just felt like it was all consuming.

Scott Benner 53:48
And when he was without this, right, right, right, like,

Marilyn 53:51
what would my life have been if I didn't do this list? 10 years. Yeah. And I don't mean that in a negative way towards him. I would do anything for you, you know, you do anything for your kids no matter what, what they had or what they have to go through. But I just felt like we were spinning our wheels. And I felt like we have to get to a point that he gets this. So we don't have to think about this all the time. Like I would hear it. And then it got to the point that and this was definitely on me. This wasn't anything he was intentionally doing. Where I would listen to the podcast and it was almost like, everyone, it seemed like everybody was getting it but us or I couldn't relay the information enough to him to make him care. So then I was getting to the point that I was like, Well, I don't even want to hear these happy stories because this is making me sad that we were not there yet. What's going to get us there. I don't want to fight about this. And we just I had one night I remember saying to him, you die I can remember saying your diabetes is gonna kill me before it kills you. And it was just because I never when he was little, you know, I didn't attack head and tell him you know, you can lose your foot one day you don't because I couldn't even control I didn't know, I didn't understand that even that well, right. And I just wasn't my like not gonna tell this guy as he gets older, he learned new things. But I never made it a point to say, oh, did you know this could happen to you? If you know I didn't want to threaten? And

Scott Benner 55:16
let me jump in here and show. Joe when she says that to you? Is that one of the first times in your life? You see your mom as a person and not your mom?

Joe 55:24
Yes, definitely. When she said that, I don't remember exactly what I felt. But I knew I was damn. Like, I got it. Things like that. That's not right.

Scott Benner 55:38
Was it a guilty feeling? Or? Yeah, or a loving feeling?

Joe 55:43
Both? Because I always tell her like, I always did tell her like, you need to let me take the reins a little bit. And granted, I get washed me because I didn't know nearly as much as I do now or what she knew. Like I said I'd even have a seizure. I heard you say Arden had a seizure once and I was like, What

Scott Benner 56:03
did you wonder? Like, what else could happen to me that I don't? Yeah, Joe.

Marilyn 56:07
That's what, that's what between the fight we had, and that, because that's when he started listening. What happened was after a fight, we kind of had to come to Jesus moment. And we started I said to him, Okay, this is what we're gonna do. If you're good with it. I'll give you two episodes a week. And I'll listen to it again, too. And we started with the pro tips. And when you're through with it, we'll talk about it. And we did that. And that's how we did it. And he totally, and then when he shortly learned about the seizure? I remember saying to him, You telling me that's all I had to tell you, like four years ago, and this would evolve?

Scott Benner 56:44
Probably, probably not, it just would have found a different way to ignore you. That's all.

Marilyn 56:48
Yeah, you're right. Well, think of Illinois. Me. Yeah. Oh, please.

Scott Benner 56:52
Well, you don't know how to tax Why would I listen to? But imagine that dynamic that gets set up, right? You're a person, you're not a you're not a professional diabetes person. And suddenly your kid has diabetes, he doesn't know what he's talking about. You don't know what you're talking about. Now you do a division of labor where your husband's like, alright, you can do that. I'll go make money. And you know, your daughter, I'm assuming somewhere is like, nobody's even paying attention to me anymore. Please. That's another part of it. Yeah. So there's all this happening. And then it's not easy. And it's not intuitive. And it doesn't go the way they tell you it's going to go. And it brings in all of these interpersonal and psychological issues. Doctors don't talk about them at all. Like once in a while they'll say to you, you should see a therapist. You ever no one ever tells the doctor's office? Oh, me or Joseph? Yeah, either. Have you ever heard that?

Marilyn 57:44
Um, they just did that. Now, yeah. But truthfully, I sought that out on my own because I knew I needed to, I knew I was getting to the point that I was just like this unhealthy. You know what I mean? And then I got to the point that I'm like, something happens to me. He screwed like, you know,

Scott Benner 58:03
yeah. I mean, they really, he's not screwed, he has to start over. You there's a if that were to happen, let's just say you get hit by a train. And you're, and you're gone. Right prior to this happening, his health declines. And with some luck, he figures that out on his own, and he does or he doesn't like that's sort of just the way it is like, you know, for every person who comes on here and tells that good story. I try to have someone come on and tell the other story so that you realize that probably more people I'm gonna guess many more people than not are not doing well managing insulin and their diabetes. And that that really could be your your a lot if you don't understand these things. To me, though, the the worst part of the whole conversation is just it's that it's that feeling like that the dynamic between the two of you had disintegrated. And you weren't you were going to build an adult relationship where that that kid was not going to call you very much after he moved out. Mm hmm. You got you this this almost kind of like, dissolved your mother son relationship. Is that better now?

Marilyn 59:09
I think so. Oh, you both think so good.

Scott Benner 59:12
Well, he said yes to and maybe he just wants you to pay for college, or maybe Yeah, exactly. Or maybe he really means it. Let's find the right job. How's that? It's almost done. How did it how's the changed for you?

Joe 59:24
How is the dynamic changed? Yeah. In a sense, I think it's brought us closer together because we've never had to work on something together as hard as we have diabetes. For like, and no one else has. And this is no one's fault. It's just like no one really took the reins except harder. Like my sister knows about it. My dad knows about it, obviously the non diabetic but like, but like the only app they're almost like, every once in a while. I'll get a text from my sister because I have all three of them on the app for the Dexcom every once in a while. attachment. She's like you good. Like, it'd be like 42

Scott Benner 1:00:05
Hey, I have plans this weekend don't die.

Joe 1:00:07
Yeah, it's like that. But um,

Marilyn 1:00:10
his friends text him more wrong.

Scott Benner 1:00:14
Do you have your friends following you? Yeah. It's really fun. It's really funny. It's nice. You guys started like a little social group around your blood sugar. Yeah, we

Joe 1:00:23
did. It's really cute. Um,

Marilyn 1:00:25
so when he was on the track team in high school.

Joe 1:00:30
That's another thing.

Scott Benner 1:00:31
Sorry, go ahead. That's another thing.

Joe 1:00:34
That's just another thing about it. Because I played sports. Like, since I was in seventh grade. And the people my like, my, my teammates would look at me and be like, you're really pale, dude. And I'd be like, really? I remember in middle school, the nurse, you have to come out at like three o'clock and be like, Joseph, check your blood sugar. And then she gives me like, milk and a graham cracker. And then I have to go run a mile. And I puke.

Scott Benner 1:01:01
Yeah, that sounds horrible.

Joe 1:01:04
It's just a weird balance. But it was it was just another way. Like, as I got into high school and everything, it was another reason to find balance in it and like find what worked because I had to perform like I was expected to perform a certain way and participate in my team. So I had to figure it out.

Scott Benner 1:01:19
Isn't it terrible that it has to devolve before? Like I mean, it seems like a rule like some people don't some people find. I mean, technology's definitely helpful. The podcast is pretty readily available. And it's popular so people can find it sooner. But you think that you guys had to basically go to like a point where you're like, Well, we're all going to just die here. If we don't do something like that sucks that it was break before. Yeah, that as you're talking, like the part of my brain that wonders how to make the podcast better. Like that's the part I'm thinking about right now. Like, how do you how do you stop people from having to have these, these experiences before they can have better experiences? You know, like, how do you how do you it's just the it's even the way our healthcare system works, right? Like, we're not going to help you. We're not going to help you not get cancer, but we'll definitely help you after you get it. And that kind of stuff.

Marilyn 1:02:13
So I just started diagnosis. Yeah, it's just I don't know,

Scott Benner 1:02:18
I agree. I just I mean, I have doctors on and I talked to them. And I have private conversations. And I still don't know what the answer is. Because well, it's too big of a picture and everybody can't. Like, Joe, how well did I do in an hour of bringing you up to speed?

Joe 1:02:35
You helped me understand a lot more than doctors did. That's for sure.

Scott Benner 1:02:38
Yeah. I don't know why you didn't do that a couple times a year with somebody

Marilyn 1:02:41
you said more than an hour, then his his doctor told him in eight years.

Scott Benner 1:02:47
He shouldn't be that way. Yeah, you know, and I don't, it doesn't need to be like, I mean, I mean, all joking aside, there's nothing that special about me, like somebody else, figure out how to do this, you know what I mean? Like or try or want to do it? Like maybe that's the difference. Maybe there are people that deliver it and the way you deliver. I'm amazing, but that's not the point. The point is basically other people could do it in their own way. And that that might be reasonable as well. I'm sure there are people who are but obviously, there's something about scope and reach that's lacking. Right. Right. Right. And that's why just the podcast format just works. Because I have

Marilyn 1:03:23
to tell you, once we found the podcast, like I said, you know, his doctor still gave the same advice still, you know, once his agency started coming down, he was like, Oh, you're doing really good. Never asked why never asked how never, you know, showed an interest or why didn't you do anything different? And at that point, yeah. Joseph liked him. I liked him. And it was kind of like, look, he gives us up prescriptions when we need it. We go to get checked, but we got the podcast. So let's do that. Both of you know, like, we're good. I'm not gonna find like, you know, he was still Joseph turning 19 Next week, I'm like, You're gonna need a new and he was a pediatric and I'm like, You're gonna need a new one soon anyway, which we actually found. That's a funny story to tell you that. So we just kept going because I was like, was a bad guy, and he doesn't bother us. And he's happy. We're happy. You know, it was

Scott Benner 1:04:15
like, you just keep going. You turn into those Madagascar penguins. You just smile and wait. That's exactly yeah. Thanks a lot for coming. Oh, no, I love it. Thanks for you. Oh, that thing you said earlier about? Moving my site over an inch is very helpful. Thank you.

Marilyn 1:04:31
He was like he was a robot every time we went in.

Scott Benner 1:04:35
Do you think that doctor is somewhere right now thinking I did a really good job with that job, kid.

Marilyn 1:04:39
Yeah, he's probably thinking, Where is that job? Give me a year left.

Scott Benner 1:04:44
No, but you know what I mean? Like, I wonder if like you left any thought, ah, when I said really work?

Marilyn 1:04:48
Yeah, you know, who knows? It's like, I did it.

Scott Benner 1:04:52
I did. It. Just goes home to his wife. He's like, lay down. I'm victorious. Saving young man today I told you I'm God. God, I mean, I wonder how much of that complex that they talked about with doctors. Like, I wonder how much it reinforces them. Because I take your point. If it was me, I'd run the a one C and come in the room and go, Hey, what happened? Wait, what you guys do? You know,

Joe 1:05:21
Scott, you'd be a great and

Scott Benner 1:05:25
we would just curse for 10 minutes and talk about getting your Basal right get the hell out of there. I think that would be okay if I you know how much more kids would love their endos if they just talk once in a while during the real 100% It's 100% relatable, like, you know, I went to my doctor's today. He said he said some crazy stuff about 4chan and then asked me like and I don't by the way I should back up right now. I don't use for channel a channel. I don't even understand what that is I I reached for something crazy on the internet out of my brain just now. So meanwhile, we're gonna get email all the conspiracy people who listen to the podcast for a brief second, like I knew he was new. And now they're, they're like, Oh, damn it. Man. Yeah, there's something about I just listen, you guys can probably appreciate this more than people were Marilyn, you at the very least. I just I'm 50 years old. And when I was in high school, the talk of the town was that a man from New York named Howard Stern was coming on the radio. And we just all started listening. And what I took from it more than anything was is that he had my attention. Mm hmm. And he can and if something wasn't in his mind entertaining, it got the Chi bash real quick. They put us right to it, right, like anywhere. And I think about that, like, even in this conversation with you like, Man, I know I have to run you over a little bit. Because you're you're going to get going on a thought. And if I don't stop you, you'll just talk for an hour. Right? And that's and there's nothing wrong with that. I want you to talk. But you're also from the East Coast. So you don't mind when I run you over you go, Okay, it's his turn to talk now. And you kind of back out of it a little bit. That only happens when the voice in my head goes move on. And I have that voice constantly while I'm talking. Like that's enough information we understand move on go make it interesting to keep it going say something else that's valuable. Like so my brain works that way when I'm recording the show. And I know that most people who don't know Howard Stern just think oh, God, I'm listening to a podcast about diabetes from a guy who loves the podcast, or loves that radio show that you know where they degrade women. But the world has changed significantly. And I've gotten to watch a real progression of that. That man in his broadcasting skills. Oh, absolutely. And and I've learned a lot from that. So like it or not, if you like this podcast, and it's helping you in some small way you can thank Howard Stern. Thank him. Yeah. So and I just, to me, that's it. Like, how are you going to sit and listen to something so dry and boring and technical? You're not know, and it's not going to make any sense to you either.

Marilyn 1:08:14
I have to tell you when I said like when I initially searched you and I said there were a few. Back then there were a few ahead of you in the search. I gave it a try. And I'm not even kidding you to maybe it's just the way I am two to three minutes. I'm like out, like if I don't get that initial grant and that initial, it's not going to happen.

Scott Benner 1:08:34
Well, I have that feeling I turned podcasts on. I can't get through the intro sometimes. Yeah. Oh, God, is it gonna be like this, you know, super serious and no personality. And listen, one of the nicest things I can tell you is that if an actor comes on the Stern show to talk about a movie, he'll interview him for two hours. They'll never mention the movie at all. And when it's over, I feel like oh, I should see that movie. Right? Because you learn. Right, right. And so most people don't understand that most people are real ham fisted. And they're just they push things forward and slam you in the face with it and think that that's the way to get somebody to, to do something. But I'm because he knows the questions to it. Yeah, yeah, I'm making a podcast where I want you to, I want you to understand how to use your Basal insulin. And I want you to Pre-Bolus and understand the impacts of your foods and boring stuff that when people start talking about it, you go, Oh, my brain doesn't care about this. I don't care about this. A world where a world where you could pick up your phone and choose between a dozen different services that will pump music or video into your face. And I'm going to have what a dry conversation about the glycemic index, and you're going to listen, I guess, you just you just heard that you just heard your son say he thought he was okay. You know, like, why would I listen to that? I'm okay.

Marilyn 1:09:55
In a way that's what was frustrating to like, excuse me when we when I first started listening. I knew Joseph was love your sense of humor. I knew once he heard you, he'd be hooked. Like I knew it. Him too. But he he had to be read he had to. And I have to say, like, I don't want I hope this doesn't come off. As you know, Joseph my forte or growing up, like he, he was an amazing kid when it came to diabetes. He never, ever gave me if I said, we're gonna try this wherever he was the most. He really was easygoing did with the only thing like I said, he didn't want to pump. And that's how I felt like, this take gives me no grief with this. He was handed this at nine. I'm going to force that on him. He and I'm blessed that he, as he got older, he was athletic, and he cares about his health and he eats, right? And he works out. And to me, that's it. It's almost like God, and you have to worry about that part of it. You know, so he really, it's made him an amazing. I mean, don't get me wrong. He's still a typical 18 year old that I could

Scott Benner 1:11:04
she just can't let you have it, man. Just can't take him with the other right away. So very Catholic move, Maryland. Sorry. Yeah. He just guilt him and then hit him and then smile out. But

Marilyn 1:11:16
I do believe it's, it made him mature. Beyond his like, it really did give him a part of his life that I think even he would say, he wouldn't be this way without the dipole.

Joe 1:11:27
Yeah, no doubt.

Scott Benner 1:11:28
I believe that I think Arden's who she is because of it too, in a good way. But there are plenty who are hurt by it, too. Right? Yeah. Good, John. Sorry.

Joe 1:11:38
No, it's just like, it makes you think differently as you grow up. Cuz I had diabetes so early, to the point where like, I had diabetes through the transition, of like, become of being a kid and becoming a teenager and becoming like a young adult. So like, if I'm out now. And like, people are like, oh, yeah, like take a beer. Take this take that. I'm like, Oh, my blood sugar go up. No, like, I just don't. I don't drink ever because I'm just like, I want all this for this gross. Like, I'm gonna go to 250 and a half an hour. I'm not doing

Scott Benner 1:12:10
well and talk about that and feel badly. Like when did you realize that you didn't feel well? As far as what like When did like at what point in your, in your recent history? Did your blood sugar's get regulated to the point where you're like, Oh, God, I didn't feel good before this. Well, I

Joe 1:12:27
would be like, I just, I saw the amount of energy I had my soul, like how workouts changed. And even when I started, like, gaining better control, I got better at the sports that I played, because because my body was functioning the way it was supposed to. Um, but yeah, probably when I started getting an actual grip on it, I was like, Wow, I'm 150 now and I feel like I'm 250 like, I'm dizzy. My head hurts. I'd feel I've always been able to tell when I'm well, I could tell 100 Like, I just know when I'm dropping. You can feel the fall. But yeah, I feel every fall have like a spider sense. It's weird.

Scott Benner 1:13:02
It's happening. You wish. I wish he imagined being Spider Man. Amazing. Because you could get the hell off of Long Island without being on that. Right? That'd be that'd be brilliant. That's really that's what I would wish for if I was both of you. A way to fly over that road. Well, so Joe, what what do you think? I mean, coming about an average day now. Is your mom very involved anymore with your diabetes?

Joe 1:13:29
Um, it's yeah, she's definitely involved. And if like something goes wrong, I'm not that it's like drastic, but excuse me, if I have if I have a rise, right? Drop. I'm like, Oh, all right. Well, I did this, like, what do you think? And then she's like, okay, it was definitely timing, like, tomorrow, try the same and do this. And I'm like, Okay, let me do it the next day, and more often than not, it works.

Scott Benner 1:13:51
Yeah. How long did it take you to trust that it was gonna work?

Joe 1:13:54
Um, the more I listen to your show, the more I thought it was gonna work because everyone seemed to have good results with it. So I was like, alright, tested, just has to do something.

Scott Benner 1:14:01
Yeah, that the, the fear part is, it's huge for some people and some people. Yes, no, some people can just look at and go, alright, if it's gonna work, it's gonna work. You know, and, like, Arden is a great example. You can tell from her interview that, you know, she just believes in what we do. Yeah, like the idea that she's gonna have, like a big problem doesn't even really occur to her. Right, which, which that that kind of comfort, lets her do things that other people would be freaked out by. Yeah, you know what I mean, when I'm telling her to add carbs to our last meal. Sorry. Yeah. And by the way, Arden's blood sugar is 143 Right now, she had eggs, bacon and a piece of toast.

Joe 1:14:48
I was just 142 I think I'm higher now cuz I have fat right? So I'm a bit higher. I'd like to do right now, but I have a bunch of insulin on board.

Scott Benner 1:14:57
So yeah, you're um

Marilyn 1:15:01
What am I telling you?

Scott Benner 1:15:01
I just let you guys

Joe 1:15:05
know she's gonna do it right now, Scott on the budget. The extended Bolus is your friend

Scott Benner 1:15:09
do you think? Do you think she's sending you a very long text right now behind your back? Yeah,

Joe 1:15:13
she's talking to you. No, I'm

Marilyn 1:15:15
not because my cell phone is far away from my house. I don't even know what you are right now.

Joe 1:15:20
Okay, good. Don't look how does? Yeah.

Scott Benner 1:15:23
Do you have anxiety around that not knowing what his blood sugar is?

Marilyn 1:15:27
Me? Yeah, I would have six months ago. There are days now. And that's why that's how I know things are better. I mean, obviously, number one I know things are better. Through is a one C and just the way he controls it. But I find it work. I can go through an all sudden thing. Oh, my God, I haven't even checked. I think the alarm went off, like what's happening? Or he'll text me and be like, catching it. And then I'll look and be like, Well, what's happening? Where I used to look at that thing? Yeah. Oh, all the time constantly.

Scott Benner 1:16:01
Is it fair to say I've improved your sex life?

Joe 1:16:04
Um, it's not a conversation we need to have.

Marilyn 1:16:08
Me or Joseph. Joe,

Scott Benner 1:16:09
I just want to dig into your mom's sex life for a second while you're listening. I mean,

Marilyn 1:16:12
I probably get my husband to listen to the podcast. That's another story. So that's an interesting, I'm gonna gross him out. He's

Scott Benner 1:16:19
not gonna lie. No, I was just teasing. I just had to say something to make him like panic for a second.

Joe 1:16:24
That was the most alert I did all day.

Scott Benner 1:16:27
I have to go. I have to go. Still super gnarly, dude. What's it? What's it? Like?

Marilyn 1:16:33
Is there any time that that would be good, Joseph. Yeah, what

Scott Benner 1:16:35
time of the day? Should we get back together and discuss whether or not your mom and dad sex life is picked up after you're

Joe 1:16:41
not in the room?

Marilyn 1:16:43
I have a happier person. I'll give you that.

Scott Benner 1:16:45
Good. I'm glad. That's yeah,

Marilyn 1:16:47
no, I, I think I know I have become a much better person. With this amount of stress left from my life gone from my life. Joe was and I still worry about him. We're still working on. He's good. I just hit him last week with them. Because now I have this now that he's in a space where he's in a better place. The other day I said to him, Joseph, you know, looping is right. And he was like, what I'm like, You gotta listen to this episode. And I sent him the one with Katie. Yeah, because I'm, I'm now that he's in. I wanted to try the DIY loop. But I knew I didn't have enough confidence in myself to do it a year ago. And I knew he wasn't in a place that I'm like this. We have to start at step one. First. Let's get this under control. But I do feel he's at that place now. Like we both can't wait for Omnipod. Five to come out.

Scott Benner 1:17:43
Oh, it'll be before you know it now. But Joe, are you in? Are you still in high school? Are you in college now?

Joe 1:17:50
I'm in my last year of college and your last year of college. I'm only in a I'm in a two year program. So Okay. All right. And it hasn't been four

Scott Benner 1:18:00
years. It was like I was like, hold on. He's a genius he started

Marilyn 1:18:05
you know what it took to get him to go to a two year college.

Joe 1:18:08
If you saw my grades you would

Scott Benner 1:18:10
think well, what are you planning on doing after you finish the the associate's

Joe 1:18:15
right now I'm an intro mechanic at a dealership. I'm so probably stick there for a little while, see if I can move up and become an actual tech. And then I'm sorry, no, no, go

Scott Benner 1:18:28
ahead. No, no, you can talk for yourself good you keep talking.

Joe 1:18:32
Now just basically just see if I can move up and then I'll I love trades and I want to learn like as much as possible. So whether it be go back to school for like a welding job, or stay a mechanic and move to different shops, just see what else is out there for me.

Scott Benner 1:18:48
Did you hear the after dark episode recently with Mike who was an auto mechanic by me he diabetes overthrow his his, um, his, you know, all of his complications got so bad that he had to stop working with his hands. So

Joe 1:19:04
I could never do that.

Marilyn 1:19:05
I told you about that one. Joseph. He was the one that he initially that was an amazing episode, because when I listened to his how we eat episode, I would have never thought that was the same person to know the complications that he had. Oh, you did? Tell me about that one. Yes. You know who I said he was on before? And he talked about how Yes. And I had said, listen to that one night. That was amazing. And that was

Scott Benner 1:19:29
because when you listen to him in the how we eat episode, you're you're listening to the man who understands now, right and his life from that moment forward in the way it is. And then when he tells you about the previous parts of his life, right, you know, to what we talked about earlier, like he can't turn back time, you know, that idea of wasted time and wasted opportunities.

Marilyn 1:19:47
That's why I wanted Joseph to hear it. Yeah, I thought it was I didn't even realize it was him until I started listening. And I thought to myself when his voice sounds like what do I know? And then when I realized who he was, I was shot. He has a very specific

Scott Benner 1:20:00
voice. He really does. Yes, he does. Yeah. But okay, so I mean, I'm not bringing it up, like, I'm not trying to bug you out. I'm just I just It popped into my head, like, you know, he's he loved, he was a mechanic, he loved that he used to work on pianos, he loved that. And then he lost his dexterity lost a half of both keys, you know, so. But he, but in the reason I want to tie that all together, is because you said something earlier, that that made me think of this. So you talked about like, Joe's was a good kid. And he, you know, he got along with everything. And he didn't complain, he did the things he was supposed to do. And doctors are telling you, you're doing all right. And the truth is, is that none of that really matters. If it's not, if it's not true on the number side, do you know what you mean? Like if you're if your variability isn't tight, and your blood sugars aren't bouncing up and down, you're not spending a bunch of time with real high blood sugars are real low blood sugars, you can have as good of an attitude as you want. If you're, you're still, your body's still being hurt, you know. And so I think sometimes we commingle the, I have a good attitude with everything's going okay with health. And for some reason, we give more credence to the part where, like, always smile, and it's fine. We're paying the mortgage, then then, like, you know, my blood sugar was 180 for seven hours yesterday. Right? Like, there's I don't, I don't know if it's because it's, it's easier to control that stuff. You know what I mean? Maybe like, it's easier just to put a smile on your face than it is to figure out how to Pre-Bolus Right, but I don't see it that way. Like, the way I see it is that those things that you do can lead to those other things you say actually honestly being true. Instead of just wishful thinking or blissful ignorance. Right, you know, so I, and it's just not like, it's not easy. And it sucks, and I wish nobody had to do it. But since this is the situation, I mean, just put a little effort up front and save yourself countless hours and days and weeks of, of stress and anxiety. And Joe, is that working for you that way? Like, are you okay, like if you moved out right now, would you be alright?

Joe 1:22:17
Yeah, I think so. Yeah.

Scott Benner 1:22:20
That's yeah, yeah. i It's interesting, like, you're not sure, but you're confident that it would be?

Joe 1:22:25
No, yeah, I think that'd be pretty good. Because, you know, if I, if I need something, just text away, and she normally helps him just figure out what I could have done better and like, how to prevent it for next time. And I like I worked full time this entire summer. I was out eight to find every single day. Yeah. And, you know, I had to learn how to work with it. Because like, I'm I was, like I said, I'm a mechanic, I'm on my feet the entire day. So I had to learn how to produce my Basal and do well, because I was exerting energy. And I was, you know, I had a lot of activity going on. So my blood sugar behaved differently. And I would go back and forth and hurt and be like, Okay, let's reduce your Basal for X amount of hours. And as soon as you eat, take this amount, but take less here. Just help me work it out. Yeah, so that's great. I think I could do okay,

Scott Benner 1:23:13
man, that's really wonderful to you're able to help him like that. I want to tell you all that one have a memory that still endures for me is walking you through putting on your first pot through a video. That was hilarious.

Marilyn 1:23:26
You know, it's funny, you know, even that, not related to diabetes, but I remember him starting it. And he texted me and he was like, oh, Scott said, he can do it. This time. And I was at work. And I was like, Ooh, but I'd want to be there. And, and he told me that Scott was like, What are you for? Tell your mother, you could do this yourself. And to me, I was like, You know what? He's right. Why am I hovering? Why am I like, I guess I wouldn't be there for him. And then I was like, oh, yeah, I have to let him do more. And if he fails, he fails. And he'll figure it out again. Excuse me. Yeah. But the I remember you telling that I'm like, Oh, God, he's right. I'm good with parenting things.

Scott Benner 1:24:10
It's hard not to take Joe seriously. His voice is deeper the mind. So? No, yeah, I just it's I mean, listen, if he says I'm Joe, by the way, that's a real thing. And like, just say something in a commanding way, and people will listen. He does. Yeah. I honestly, I think it's one of the unintended secrets and consequences in the podcast. Like, I think I have a voice that you that makes you comfortable. Yeah, you do have a very good book. Yeah. So it's just that's dumb luck. Yeah. Because I have turned on other things where the guy starts talking like yeah, I'm not listening to that. Yeah, absolutely. Can't hear you squeak next hour of this. I don't care how good the content is.

Marilyn 1:24:51
That happened with one of the first diabetes podcasts I heard. And I was a woman and I thought nope, do this

Scott Benner 1:25:00
Oh, gosh, I feel like I know you're talking about.

Marilyn 1:25:03
Uh, you might.

Scott Benner 1:25:06
Alright, is there anything that we haven't talked about that we should have?

Marilyn 1:25:13
Joseph, do you have anything?

Joe 1:25:15
Not think? pretty much covered.

Scott Benner 1:25:17
It'd be good. If you listened to this and it was to other people. You'd be okay with this. Yeah. I think you did a good job. I think you guys did a good job, too. I just, I was interested. Was anybody ever nervous?

Marilyn 1:25:30
Um, I, at one point, I honestly, I knew what I wanted to express and why I wanted to come on. But I did have that feeling like what in the world if we kind of told like, what am I going to say? What but no, you have a way of there was nothing to be nervous about. Good.

Scott Benner 1:25:46
I'm glad. I'm very glad. Everybody. Gotcha.

Joe 1:25:49
Sorry, Mark, do you want about the new Endo? We saw? Oh, but I noticed. No, you were

Marilyn 1:25:56
excited about that. Yeah, quickly. Because Joseph sounds like a 32 year old man, we can't really see a pediatric endocrinologist much longer. And I know, with this whole transition of him doing things, I wanted him to find an endo, local, because, you know, eventually, I'm not going to be going with him any visits, even though I still want to. So I called around and I wanted to find someone who thinks the way you, Scott use the way you think and would be on board with us doing all this. So I made some calls, asked some references, found a guy local, interviewed his office manager as if I was interviewing him for a job and had a feeling like this guy might be a good fit, young guy. So we go for the first appointment. And I failed to tell Joseph that he was having bloodwork done that day. So that didn't go over. Well. We were not having a good time in the waiting room, right? Yeah.

Joe 1:26:48
Yeah, I used to be petrified of needles, and then I got diabetes. So I kind of had to muscle through that. Yeah. Now they're just thinking.

Marilyn 1:26:57
He he was the kid or his pediatrician still says she has the talk of like her dinners and her when she meets colleagues, because he I could never tell him when we had a well visit or when he had a checkup because I literally would have to chase him in the house to get him into the car tip for adopters.

Scott Benner 1:27:15
Have you ever throw hands at a nurse? Oh,

Marilyn 1:27:19
did I? Um, I don't think I know Janet punched the

Joe 1:27:24
nurse bear strep test is surprisingly the non diabetic

Marilyn 1:27:27
kid hit a doc No. But he he had when he was little. And I swear this is what did it he at 18 months he had a block tear duct that he had surgery on under procedure and he had a he was in the hospital for an hernia. And well, Joseph, I hope you don't mind undescended testicle when he was 18 months old, but he's fine now.

Scott Benner 1:27:50
But your voice is fine. So it must be where it belongs. Yeah, these

Marilyn 1:27:54
so anyway, but I swear with that blood work and staying in the hospital and surgery and going in the afternoon. I swear subconsciously that did something to him. Because after that to get him even to the pediatrician for a shot, it would take the nurse that doctor knee it was a workout. I had bought into the for well visits without shoes on because I couldn't rest. He was a peanut, but I could not get him. And he's the one that get that time. His pediatrician will still say, of all the kids to get a dose with this. I remember when the blood work came back. It was like no.

Scott Benner 1:28:29
Joe never have kids. If that's not what you're hearing right now, I don't know what you're hearing.

Marilyn 1:28:34
Right? He knows he'll admit it.

Joe 1:28:37
Oh, no, I was terrible. But now it's like, now when I'm putting on a pod. I'll like be looking at my laptop or something. And I'll miss the needle cap and I'll put it through my string. And I'll be like, oh, and I just pull it out.

Scott Benner 1:28:50
He has changed. You got past that one. Yeah, so we've been.

Marilyn 1:28:56
Yeah. And it gets to the point that we're still a little nervous thinking like, I hope he's on board with this whole way we treat things and stuff. So he's like, Oh, can I see a PDM in it? And I was like, Okay, here we go. And he's looking and he's like, he said to Joseph, you Bolus a lot during the day. And I thought, oh, here we go. You know, it's either gonna be what are you doing? Or he was so thrilled, like, so thrilled at the way Joseph would be aggressive with with numbers and his tight range. And it was just and they had such a rapport, like they just got along so well, he was so I've never seen a doctor, so elated. He's like, he said, Joseph, it's half my patients looked at it the way you look at it. And he's like, this would be fantastic. Right, Joe? He just was so and Joseph loved him. And I just feel like, okay, he can see this guy and they're going to be on the same page and he told him all the complications he's going to avoid and how people don't you know, they don't treat as aggressively as he does, and it was just amazing. It made me feel like okay, he's gonna be good. He's got this guy. They're on the same page. It's not going to be like a robot every time he goes. And it was amazing. So

Scott Benner 1:30:11
you're gonna be okay when he when he leaves the house? I think so. Joe, is there a girl while

Joe 1:30:17
we're in the waiting room? Like she told me on the podcast? I'm like, maybe wait, a visitor, Joe?

Scott Benner 1:30:22
No. I'm always between a rock and a hard place on that one. Because I do want people to tell their doctors about it. And yet, I don't want you to do something that's gonna make your doctor think that you're a kook. So.

Marilyn 1:30:32
Exactly. On the first Yeah. The first visit, I thought, oh, let's let's just

Scott Benner 1:30:37
say, Joe. Can you imagine Maryland charging through the door yelling about it's a podcast?

Joe 1:30:43
Yeah, that's the secret.

Marilyn 1:30:46
But now that I know that we know he's he's the thinks the way. You know, it's like he thinks the way we think. Yeah, it's like, Absolutely. next visit. You're gonna tell him all about this.

Scott Benner 1:30:57
I would make a joke here about me being the secret. But I fear people would think I was being serious. So I'm not going to. But it's yeah, it would be all it could be off putting to some people. Yeah. And but but at the same time, spreading the word is going to help somebody else because a lot of people come through the podcast through doctors.

Marilyn 1:31:17
Absolutely. It's I tell so many people, even my brother, you know, he's perfect example. We just in texting. I didn't even tell Joseph this. I was texting him this week about something. And my brother just started fast. And I started telling him my brother is still very I'm not as aggressive as I'd like him to be with his treatment. But

Scott Benner 1:31:40
when you move out, she's gonna start working on him.

Marilyn 1:31:44
Project

Joe 1:31:47
advertising, just shoot her an email.

Scott Benner 1:31:52
Give a business you'd like to advertise my own committee got

Marilyn 1:31:55
oh, I'll tell you. I would go I would go to the hilltops and, and speak about this. did shoot and I still I still will get you to Long Island. I still have that one guy who would sponsor it and it will happen when the world is back to the way the world why

Scott Benner 1:32:11
I ever speak in public again. I'll be surprised the way everything's going. But I actually have somebody designing like a crest like a logo for the podcast. Yeah, it I hope it comes out really well. And I have a lot of hope. It's somebody with type one who wanted to help the podcast and as an artist, her art is really amazing

Joe 1:32:27
that she would put a banner on the side of her car and drive. I'm literally

Scott Benner 1:32:31
my car for a tattoo before I die. Like just one person who was moved by it enough to get a tattoo or named their child after me.

Joe 1:32:39
Don't tell me that she tells me I'm not allowed to get more tattoos. Oh, we just

Marilyn 1:32:43
got to this year. And plus, I would never let him get it. He doesn't want like a type one. Not nothing against people, but get the type one job.

Joe 1:32:51
You know what I did? Scott? I she, I told her I she knew I was getting my first one. I told her I booked an appointment for a second one. And she goes, Did you ever think about what these could do to your blood sugar and I go I have an extensive research model. There's nothing you could tell me that will make me stop doing this because it's safe. And you need to keep your numbers low. Otherwise, if they're high, they can get infected. So I was like Do not tell me I kid.

Scott Benner 1:33:13
You meant during the healing process like a couple of days. Now. I was just reaching out one, Joe, I just want to tell you something and I want to make sure like man, how old are you? 52 Okay, 40 years from now. She's gonna be up here.

Marilyn 1:33:30
I'm gonna haunt them when I'm gone.

Scott Benner 1:33:35
She is never gonna leave you alone, man. Is she your sister this way?

Joe 1:33:44
All you do is gossip. You're doing it like don't do anything. I'm not saying you don't do anything but you're not. Obviously she's not diabetic. You have no reason to be honored. She's also 22 She's an adult.

Scott Benner 1:33:57
I'm imagining I'm imagining your sister right now listening to this. Yo man, what's your problem?

Marilyn 1:34:02
You're picking the wrong week to bring perhaps you can branch out into like the Dr. Phil podcast and we might be on with another episode of those non non diabetic related related.

Scott Benner 1:34:17
Alright, so guys, listen, I really enjoyed this and I honestly would keep going but I have to get into a call somewhere. Yeah, it's not fun at all. When we get off I'll explain to you why I decided to drive instead of

Marilyn 1:34:34
me it's not Long Island traffic.

Joe 1:34:38
It's so good. Yeah, I

Scott Benner 1:34:40
really appreciate you doing this Joe. I hope maybe one day Joe when you're older, you might come back without your mom and totally talk a little more about this

first type of a quart of course I'd like to thank Joe and his mom, Marilyn for coming on the show and having such an open and honest conversation. Thank you very much. I also want to thank touched by type one, and remind you to head over to touch by titebond.org. And check out all they're doing including that golf outing. And of course, to get yourself a free, no obligation 30 day trial of the Omni pod dash. If you want to know if you're eligible for that, all you have to do is go to Omni pod.com Ford slash juicebox. Don't forget that T one D exchange survey T one D exchange.org. Ford slash juice box

is a pretty long episode. So I'll just thank you for listening remind you that I'll be back very soon with another episode of The Juicebox Podcast tell you not to forget about that Facebook page Juicebox Podcast type one diabetes, beautiful, beautiful, beautiful place to talk about type one. And honestly type two, I got all kinds of peoples in there. If you're using insulin Juicebox Podcast type one diabetes may just be the place for you. It's on Facebook, and it's private. So you don't have to worry about anybody poking around. You got to answer some questions to get in there. You know what I'm saying? You know, I'm saying I don't even know what I'm saying at this point. So there's very little chance that you know what I'm saying but you should check out the Facebook group. What else? diabetes pro tips started a yoga my brain just shut off the diabetes pro tips. They started episode 210 But you can also find them at Juicebox Podcast calm and diabetes pro tip.com diabetes pro tip calm you'll also find the defining diabetes series. There's a ton of stuff on the website you can check out and everything of course is available wherever you get audio, Spotify, Apple, or any other audio app you can think of the show should be right there and it will definitely be free.

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