Scott Benner 2/22/23 Scott Benner 2/22/23

#854 T1D In PR

ADULT TOPIC WARNING. Sexual Assault. TRIGGER WARNING: This is a frank discussion with a female assault survivor. Amanda has type 1 diabetes and she has overcome a lot.

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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 804 Wait, what episode is this? Oh 54 Hello friends and welcome to episode 854 of the Juicebox Podcast. I'm not editing that out you should see that I can't keep up with this

on today's show I'll be speaking with Roxanna she is not rocks on her accent Roxanna. She is the mother of a toddler with type one diabetes. And this is their story. That what they say on this hokey TV shows. Welcome today. Roxana. Roxanna, this is your story. I can't do I can't I don't. I don't. I don't have the energy for all that. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Always, always, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. And remember, my voice may be deep, but I hate those stupid voices that they put on like on the local news and stuff like that. Like Hi, Jenna. I hear it's snowing out there. Ah, I can't do that. This is Roxanne the story. Guys, listen to Andy exchange.org forward slash juicebox go take the survey please takes less 10 minutes would really help a lot of people with type one diabetes would really help me t one D exchange.org. Forward slash juicebox. Should I just talk like this all the time, it would be really irritating. This episode of The Juicebox Podcast is sponsored by Dexcom. And you know what they make? They make the Dexcom G six and Dexcom G seven continuous glucose monitoring system. You're looking for that new Dexcom G seven Scottie gotcha covered dexcom.com forward slash juice box head over now. And why not while you're out and about look for an omni pod on the pod.com forward slash juice box. There's Omni pod five. On the pod dash. There's so many to choose from Omni pod.com forward slash juice box you can wear the same CGM and insulin pump that my daughter has been wearing for ever. I can't curse the ads off the bleep that out. Links in the show notes. Links at juicebox podcast.com. Support the sponsors support the show. You know I was just thinking about it. I don't think it says anywhere that I can't curse in the ads. It's interesting. Alright, I'll give that some thought.

Roxana 2:41
My name is Roxana. I'm from Puerto Rico. mom of two and my toddler is the one with type one diabetes.

Scott Benner 2:48
Okay. How old is your oldest? My oldest is 12. Oh, and then the type one is how old? He is

Roxana 2:55
two years old and four months? Wow.

Scott Benner 2:58
It's still at the age where you're counting months. That's cool. I mean, not for people.

Roxana 3:04
I was about to be really awkward and say something like 36 months, Scott? No, but I controlled myself.

Scott Benner 3:12
Do you think of it that way? Still, though? No, I

Roxana 3:14
don't. Okay, good. Yeah, I

Scott Benner 3:16
don't want you to I mean, it's nice. Two years old really? is really

Roxana 3:20
a toddler. Yeah. Look for toddler stage.

Scott Benner 3:24
Yeah, the toddler like right, they start becoming really amazing around like, what, like five or six. And they're just like, so much fun at that point. And 12 Is that a boy? The 12 year old? Yes. He's

Roxana 3:34
a boy.

Scott Benner 3:35
That's getting ready to go wrong.

Roxana 3:36
So yeah, no, no, it's getting there. Yeah, it's almost there. I think we're there I'm not sure.

Scott Benner 3:43
We're almost there. Just what is when his armpits start smelling just hydrogen just high? No. On

Roxana 3:48
his armpits started smelling like about I guess. Before school ended? Like about second week of May. Yeah, his arms market stalled already.

Scott Benner 4:04
So your to your How long ago was your two year old diagnosed?

Roxana 4:08
He was diagnosed a year ago. He was diagnosed at 14 months.

Scott Benner 4:12
Wow. Yeah. Wow. That's tough. Okay. Okay, so how does that present? How do you because you don't do you don't have any other type one in the family? Um, no.

Roxana 4:24
Well, okay. So my, my husband's cousin. And that sounds really odd because that sounds so far out of like the close family relationship. So my husband's cousin. She has type one, but I never knew her like we never met her. I never knew any details about her like how she took care of herself or anything. And then, when my son was diagnosed, we found out that Hashimotos has to do with immune system So my my husband sister has Hashimotos. So yeah, there

Scott Benner 5:05
is a autoimmune in your husband's side. Yeah, for sure. And now and now now with you. Well, so you didn't know what to look for. And you

Roxana 5:16
know, I had no, I really had no context like. So 2020 obviously was difficult because of the whole pandemic. And well, my son was born in February. So he, I stopped working, like, I just decided that it wasn't worth the risk. So I stopped working. I'm a teacher. I should add that around there. I'm there. And it was difficult, the whole virtual thing. My students not showing up to class. Like, they're just like, No, I'm not going to be there. It was difficult. So I decided, like, since I had the baby, I was gonna stay home. And I stayed home. And so my son, my oldest, he was 10 at the time when I started staying home. And he was online too. So it was like, it was a win. Like, okay, I'll stay home and he's online doing his whole schoolwork, and we're gonna be fine. It's gonna be fine. Everything's fine. Everything's fine. And there's like a fire. Yeah, well, so. So that's how everything like, and that's how we that's what we decided that we were going to do, like, because of the whole COVID thing. And then, um, we, before my son got diagnosed, my dad died. I'm sorry. Yeah, it was like really unexpected. We had to fly out to Georgia. And he was like, I, I saw my toddler. He was 10 months at the time. So obviously, it was kind of weird, like what I was seeing in him, but now when you look back to it, it's very relevant. He was peeing a lot. He was eating a lot too. Like he was eating a lot, but not gaining weight.

Scott Benner 7:06
Okay, yeah, that the vicious hunger is, is definitely it

Roxana 7:11
was like never ending like he wanted to eat everything and anything and he still does. I'm thankful for that. Because toddlers are very, sometimes very picky eaters. But he's not a picky eater at all. Like he'll eat anything,

Scott Benner 7:23
makes it easier to Bolus if you know they're gonna eat it.

Roxana 7:27
And we had some we had some How do you say that like? Like the the endo wasn't happy that I was bolusing before he ate?

Scott Benner 7:39
Really well, okay. That's not what they teach or what they know.

Roxana 7:42
She was not happy at all. And I was like, but that's how you do it. She's like, No, that's not how you do it with toddlers, because they're so unpredictable. And I'm like, No, that's how you do it. You have to Pre-Bolus Because God said so.

Scott Benner 7:57
Well, you found a way to make it work with him because he was an eater that you can count on.

Roxana 8:03
Yeah, he was really he was really good eater when we got. So he was diagnosed after like four months after we came from my dad's death. And it was kind of weird, because it was like a lot of things going on at the moment. And I was very hyper aware of a lot of things like I obsess sometimes over things. And I was at the point with with his health and like everything that was going on. I was getting on my on his doctor's nerves, like I would call the pediatrician. And he was like, oh, yeah, I have you on my caller. Id what? Like, what's your name on it already?

Scott Benner 8:42
Oh, it's Roxanna?

Roxana 8:44
Yeah. What's going on? Roxanna? Did he like not poop or something?

Unknown Speaker 8:52
Are you calling?

Scott Benner 8:53
Are you calling over everything? Or was

Roxana 8:56
I was like, Well, I don't want to say yes, but I know it was.

Scott Benner 9:02
You don't admit to it that you were calling too much or you have legitimate concerns. And you were trying to get them

Roxana 9:08
figured out? Yeah, I felt I felt like I was calling too much. But when I'm so my, my toddler's name is Fabian. So when UBN started, like peeking through his pajamas, and I looked at him and he that day, specifically that day, he had like, something was really off like he his neck was hurting. And I don't know if that has anything to do with high blood sugar, but his neck hurt it like to the point like if he looked to any of the two left or right. He was crying.

Scott Benner 9:44
Really? Yeah, it was really okay. That's interesting.

Roxana 9:48
Yeah, it was really weird. So I I took a video of it. Yeah, that's, um, to that point. I took a video of him like looking to the side and sent it to the pediatrician. And I was like, hey, This is not normal, like he has a lot of pain. And I don't know what's going on. And plus, he's paying through his PJs. And that's not normal either. So like what's going on? And he's like, Well, I bet it's not nothing. It's not anything Roxanna, but so you can be like at peace, bring him in and all. Send him to do some lab work. And let's see what's going on. And that what we did, I went to the lab and his lab results came back with high blood sugar of 680.

Scott Benner 10:33
Wow. That's pretty high. And this is just like a year ago, so maybe a year and a half.

Roxana 10:41
That's a year ago. He was diagnosed in April. April 2021. Okay.

Scott Benner 10:49
Okay. Is the is the islands still in trouble from the storm? When was the storm? 2017?

Roxana 10:58
Yeah, about 2017.

Scott Benner 11:01
Does that affect services still? Or are things moving?

Roxana 11:05
Well, things here haven't been like, great. Like, I don't want to. I know people listen to the podcast, like from all over the world. I don't want them to think like they're like, things aren't going like great, great. But we do get like power outages constantly. And but I think like about two years after the hurricane, everything kind of went back to normal. I mean, we're still struggling a little bit, but it's not like that to that extent.

Scott Benner 11:35
Okay. So improvements slowly, but not not affecting your health care services and things like that.

Roxana 11:43
The it affects health care and the and the aspect as of how far away you get, like appointment set. Oh, okay. If I recall, if I were to call today and I need an appointment for I don't know, the dentist, for example. It will be like really far off like, I could guess maybe October.

Scott Benner 12:05
Really? Yeah, well, it's spring now. So there's a does your doctor does it not count for you for diabetes? Because you have a direct line to your doctor? Where did they get their number changed?

Roxana 12:21
At least no. He haven't changed it yet. And I hope he never does. If not, I'll look him up. He has an Airbnb I'll look him up see where his Airbnb that

Scott Benner 12:32
will find them. You're not getting not getting away that easy. So, okay, so you the neck pains. Interesting. Nobody's ever said that before, but very high blood sugar into the hospital? Or was it COVID? Or did that not impact the diagnosis?

Roxana 12:51
Um, that didn't impact the diagnosis. Like it was really fast. Everything moved really, really fast. Like, I remember when the lab lady called me and she's like, Hey, does your son have diabetes? And I'm like, ha.

Scott Benner 13:08
Oh, yeah. You got that like, so? That's not exactly a skilled person who does that. Okay, I just looked at your kids bloodwork. They have diabetes, right? Like, wait, what are you talking about? Like, you know, one time, Roxanne I Arden went in to get blood work for something completely. It was just her well visit at her pediatricians office. And I knew her blood sugar was a little high when it got wrong. And I was sitting outside of the lab, watching the nurse, like run things that were you know, going to go into the office for the doctor to see they were doing it right on site right there. And she just got like, you know, like, why does it ghost like her face just dropped? And she starts looking around all panic. And she's picking up papers and walking out of the room and I put my hands up and got her attention. And I said, Hey, and she looked at me and I said we know she has diabetes. And she and she goes oh, okay, okay, like she was a rock she thought she would she thought she discovered diabetes in a kid and you should have seen how impactful it was. I felt badly actually

Roxana 14:09
love for people like to grasp the idea of him being so little and having type one it's really it's it's how you explained it like it's really difficult for for any doctor or nurse or anyone that encounters him like it'd be like, we took him to urgent care. Because be because why? Why did we take um, I don't really remember why we take him to urgent care. I know we took him to urgent care and, and the nurse because we have Dexcom Omni pod and we were we're looping so when she looks at his Omni pod it's not common here in Puerto Rico for people to have Omni pod it's like really rare because people or I would say like endocrinologist like they go for the traditional pa Um, like to PhD and all of that. So when when the nurse like saw like he had the Omni pot and then the Dexcom she was like so. So what's going on? Like, why does he have so many things? I'm like, No, I'm explaining to her and my brain goes like an automatic like when people talk to me about diabetes, I want to give him like the full on experience of like, what's going on? And then, like, go back and say, oh, yeah, this is Dexcom it his blood sugar tells me like, What were his blood sugar's out. And this is his insulin pump. And that's it. And like I

Scott Benner 15:35
have to, well, you'll just go on.

Roxana 15:38
Yeah, because if not, I'll go on and I'll explain the loop. And I'll explain that it gives insulin if it sees him rising, and then I'll explain that it takes away basil and then I have to explain basil.

Scott Benner 15:50
You start a lecture, a lecture series, actually, it sounds like so when you go into that urgent care, and the person notices it, do they accept your description, and move on?

Roxana 16:01
Anything about it? They I tell my husband a lot of times, like if we have to take into urgent care if it's like that, to that extent. I always tell my husband not to mention the diabetes. Like if it's not like how do I explain it? If it's not because the lab work comes out like his blood sugar is too high or something like I tell him not to say anything about it. Because usually doctors like only focus, even though he came like for, I don't know, leg pain or something. They'll they'll focus on Oh, he has type one. Oh, so it must be because he has type one. And it just gets really annoying. So I try not to like focus on on his diabetes, like when we take him to anywhere?

Scott Benner 16:50
Well, yeah, not only annoying, but you might really not get the care you deserve. Or this available if they start thinking, you know, they start kind of I mean, how could it happen, right? They could see your kid here, diabetes, and then start commingling. All of the diabetes stories, they have to gather and think oh, this is because they don't take care of their blood sugar or something like that. And now suddenly, your kids like pains being treated like they're like a 63 year old type two, who, you know, it whose blood sugar is all over the place? That makes sense. Sorry, no, that makes sense. I was gonna I just want to say,

Roxana 17:26
yeah, that same nurse, she came in, and she wanted to, like poke his finger, and like to break down his head, like what his blood sugar was that and I looked at her and I was like, why are you going to do that? Because we're not here for that. Not to be rude, but like, and she's like, No, because since he has type one, well, you have to write down what his blood sugar's at. And I looked at my cell phone. I was like, He's 106. Yeah. What time is that from? And I'm like, from right now.

Scott Benner 17:57
Right? Yeah. Does she understand that

Roxana 17:59
the technology doesn't like?

Scott Benner 18:02
Or did she ask, did she still want to do the finger stick? Excuse me? Did she accept that number from the Dexcom? Or does she still want to do the finger stick?

Roxana 18:11
No, she accepted it. Be I told her like, it's 106. And it's stable, so that it's fairly accurate. And she just looked at me like, I know she's missing like information. I know. She wants to ask, but she did it.

Scott Benner 18:27
You have a magic thing on your cell phone?

Roxana 18:31
It's frustrating. It's frustrating. Like, because we're there's so many. We're lagging, we're lagging a lot.

Scott Benner 18:42
A lot of places are too. It's not just because you're in Puerto Rico either. Right? Or do you think it is something to do with with your geography?

Roxana 18:52
I think so. Yeah. Yeah.

Scott Benner 18:55
So that you can get the stuff there. But you're not you're not getting Dexcom and Omnipod? Like through a family member on

Roxana 19:03
it? No, no, we Dexcom Dexcom is provided by a medical supplying company, obviously, um, then Omnipod is supplied by another company, which I haven't called regularly and they do not have my number on their, on their cell phone, asking them for the Omnipod five. But they're, they're very diligent, and I'm very thankful that they they do provide us with everything. Yeah.

Scott Benner 19:31
Are you thinking about trying the Omnipod? Five? Um,

Roxana 19:35
well, I'm kind of like in between, because I've read that Omnipod five only connects like to one device.

Scott Benner 19:43
Oh, like, like, it could either be the I see what you're saying can either be the receiver for the Dexcom or the PDM for the Omni pod? Is that what you're saying?

Roxana 19:55
Yeah, and I'm not sure like I haven't read into it, but uh, you can answer that. For me, I'm not sure if, like, if it connects to the PDM on the Omnipod five will that? Will that not? Let me see his numbers? Like if I do the follow with the follow up?

Scott Benner 20:13
So does he have a cell phone? Yes, then No, you'd still be able to see it on the fallout for the Dexcom. Okay, yeah, because Arden's using Omnipod five right now we're just trying to like wrap our head around it. And she's using the PDM. And her cell phone is transmitting her Dexcom data to me.

Roxana 20:37
Oh, okay.

Scott Benner 20:37
But you do lose some of like, you know, with loop, or using Nightscout with loop?

Roxana 20:43
No, I'm not using Nightscout. Because I haven't figured out how to set it up. But I'm on that. Gotcha. Because I've read I read and I don't know if I can say this, but you can,

Scott Benner 20:54
why not? What are you gonna say? What do you get?

I read something what's gonna happen right now?

Roxana 21:03
The FDA may numb this their Guinea,

Unknown Speaker 21:05
pigs are listening.

Roxana 21:08
How do you say I'm blue?

Scott Benner 21:20
How would you like to know what your blood sugar is, without poking a hole in your finger, you can with the Dexcom G seven continuous glucose monitoring system, which is available@dexcom.com forward slash juicebox. Not only this Dexcom offers zero finger sticks. But you can get your glucose readings right on your smart device that's your iPhone or your Android don't have a phone. That's okay. You can use Dex comms receiver. On any of these devices, you're able to set up customizable alerts and alarms, setting your optimal range so that you'll get notified when your glucose levels go too high or too low. And you can share this data with up to 10 followers. Imagine what that could look like your child could be at school, and their data could be available to you, your spouse, their aunt, the school nurse, anyone who you choose, my daughter has been wearing a Dexcom for ever. And it helps us in multiple ways. Around meals, we're able to see if our boluses are well timed, and well measured. If they aren't, we can tell by how her blood sugar reacts and then go back the next time and make an adjustment. Without the Dexcom CGM. We're sort of flying blind, but not just that meals. Also during activity and sleep. The Dexcom offers us an unprecedented level of comfort and security, being able to see my daughter's blood sugars in real time. And not just the number. But the speed and direction is an absolute game changer. If you're using insulin dexcom.com forward slash juice box head over there today to see if you're eligible for a free 10 day trial of the Dexcom G six. The Dexcom is at the center of how we've been able to keep our daughter's a one C between five two and six two. for over seven years, we've been able to minimize variability and keep her blood sugar's in a stable range because of the information that we can see with the Dexcom these are our results and yours may vary. But using Dex coms feedback has helped my daughter without any food restrictions, live a more normal and healthy life dexcom.com forward slash juice box my daughter Arden began wearing the Omni pod tubeless insulin pump on February 4 2009. That was 5093 days ago. Were another way to think of it 1697 pods ago. At that time, she was four years old. Hang out with me for a moment while I tell you more about the Omni pod Omni pod.com forward slash juice box. Today Arden is 18 and still wearing Omni pod back then there was one choice just one pod but today you have a decision to make. Do you want the Omni pod five, the first and only tubeless automated insulin delivery system to integrate with the Dexcom G six because if you do, it's available right now for people with type one diabetes ages two years and older. The Omni pod five is an algorithm based pump that features smart adjust technology. That means that the Omni pod five is adjusting insulin delivery based on your customized target glucose that's helping you to protect against high and low blood sugars, both day and night. Automatically. Both the Omni pod five and the Omni pod dash are waterproof. You can wear them while you're playing sports, swimming in the shower, the bathtub, anywhere really. That kind of freedom. coupled with tubeless, a tubeless pump, you understand it's not connected to anything, the controller is not connected to the pot, the pod is not connected to anything, you're wearing it on the body tube lessly no tubing to get caught on doorknobs or anywhere else that tubing with those other insulin pumps can get caught Omni pod.com forward slash juice box, that's where you go to find out more, you may be eligible for a free 30 day trial of the Omni pod dash, you should check that out too, when you get to my link, Omni pod.com forward slash juice box. So if you're looking for an insulin pump that is tubeless waterproof, and automated, you're looking for the Omni pod five. If you want to do it on your own, you're not looking for the automation, Omni pod dash for full safety risk information and free trial Terms and Conditions. Please also visit omnipod.com forward slash juicebox.

Roxana 26:10
I try to translate in Spanish and it's a little bit difficult. Okay. I read that loop has it the new the new version of loop and it and it permits remote Bolus,

Scott Benner 26:22
oh, really, it's funny, I don't keep up as much I know that they're, and by they I mean the magical people online who are who work on loop. I know they're working on a version for on the pod dash currently that I expect to see made more public soon. But I didn't know that they were working on it. So they're working on remote Bolus for the actual loop app that exists now for the

Roxana 26:45
actual loop app. And the only way that you can remote Bolus if you if you have Nightscout setup. So that's why I'm so obsessed with getting Nightscout setup because obviously, if I'm far away and what the toddler and all, he doesn't really stay anywhere, he's at my he's at my mother in law's house right now. But she lives about like five minutes away from my house. So I was like, I left her all his like, snacks. And I told her please don't give him anything out of this. Because he usually like runs really high carbs or real sensitive like because he's so small, obviously. So I gave her all this snacks, like Carol is snacks. If he wants anything, please pick out of this. And I'm going to be home and I'm going to be watching these numbers. Please don't call my husband if anything happens if he goes low. Please give him this juice box. And I got like I gave her like really quick rundown and I just

Scott Benner 27:41
left. Does she watched them frequently or No, no, she doesn't watch them

Roxana 27:45
at all. Like it's really rare that I let

Scott Benner 27:48
go. But today's special.

Roxana 27:52
Yeah. Today's special because I wanted to talk to you. And I wanted to insist and you getting the program in Spanish.

Scott Benner 28:01
I have to tell you, Roxanna, listen, for years, and I'm not kidding. For years and years and years, I've wanted to do this. I started off by thinking well, I can let me just get the Pro Tip series put into Spanish like that would be helpful. Right? Yeah. So how do you do that? And you know, it comes down to it's this recorded thing. There's no transcript of it. I mean, I guess we could make a transcript of it and have somebody read it. But then wouldn't it feel kind of fake if people were just reading back and forth. So I thought, well, maybe like voice actors who can like listen in their ears too, while Jenny and I are talking. And then in the end, I just don't have the money for it. Like I wouldn't not only do I not know where to begin. But even if I had an idea of where to begin, I can't pay people to do that. And that's why. And I try and no disrespect to anybody. I bring it out to almost every advertiser, like hey, would you guys like to, you know, pay for this to happen? And I'm like, it would open it up to a completely new, you know, group of people. And I'm sure those people have insurance and would want to buy devices and things and stuff. And you could sponsor the whole thing. And I have not gotten anybody to say yes yet. But I do. I pitched a lot. So I appreciate how how valuable it's been for you. And I am aware like somebody just asked me the other day to like, you know, turn on the Spanish subtitles on YouTube. And I thought, Oh, that's a nice, easy fix. Except I can't even figure out how to do that. So I'm working on it. Yeah,

Roxana 29:36
I'm guessing also like, like, if you do turn on the Spanish subtitles on. On YouTube, someone's gonna have to read that anyways, because sometimes the the translation isn't

Scott Benner 29:49
good. Well, that and then you're bumping into the real concern, like the main concern I have, which is I'm not fluent, or even a little fluent in Spanish. So I can't quality control anything that's being done. Like I could say to a voice actor, listen to what I say and say this, but I won't know how to hear what they say and make sense of it. So I don't know if they're doing it the way I intend or not. And then what happens if they start filling in, like taking liberties to fill in gaps where the words don't translate, and that comes off wrong? Like, I don't want that either. So I don't know, I would need, I would literally need two people to read the parts of Jenny and Scott. And I would need a third person to be able that understood me. And my diabetes sensibilities and, and understood the podcast and English to be able to then listen to it in Spanish, and say, This checks out, or no, we can't say this, like this. I just don't have a, I don't have a setup like that here.

Roxana 30:45
Now. It's like, it's like finding a needle in a haystack. Because you would need someone that understands English, that understands Spanish, and that also understands the terms of diabetes, because there's a lot of people that are bilingual, but understand, like the components of diabetes, and all the Pro Tip series, all the things that you guys say, Yeah, that's a lot.

Scott Benner 31:05
Yeah. And then on top of that, I mean, there's what 25 pro tip episodes 44 Defining diabetes episodes is probably going to end up being like, you know, by the time you're done, it's 100 hours of content, after all the series get a handle. And I mean, it sounds to me like it would take a year like it would take a concerted effort by a small group of people, probably a year to get it done. And I mean, I swear, if I knew how to do it, I would definitely do it. I'm sorry. I know that every time.

Roxana 31:35
I know you try your best to like get to get to everyone. It's just sometimes like I when I started listening, I didn't even start at the Pro Tip series. I started on a random on a random episode of a mom that adopted and I don't know if she adopted him with diabetes already. Or he got diabetes after her adopting him anyways, it was a real rough episode because she she explains like all the things that she had to go through because he's adopted because all this all of his conditions, and it was really rough. And I wanted my husband to listen to it. Like, look what's going on. Like, I want to, I want to talk to you about this. And he's like, explain it. I was like, the half of the episode and I'm like, forget it.

Scott Benner 32:28
So you're almost having to, like translate it for your husband while you're listening to it.

Roxana 32:34
Yeah, yeah. I the episodes that I've translated for him have been like the the get basil, right. The first one that's like, newly diagnosed I don't know if it's new like that newly diagnosed or it's like,

Scott Benner 32:56
I don't remember one called newly diagnosed or starting over.

Roxana 32:59
I think it's that one. That's

Scott Benner 33:01
the first one in the in the Pro Tip series that that episode has over 50,000 downloads. Like that episode has been downloaded 50,000 times, which freaks me out.

Roxana 33:15
I bet like a third of the eyes me like

Scott Benner 33:21
don't ruin the illusion Roxanne.

Roxana 33:25
No, I guess it doesn't count that I like that anyways, because I'm guessing like, download per? Like,

Scott Benner 33:31
keep it on your phone. Like it doesn't live on your phone. Yeah, it lives on my Yeah, then it's not a download every time you listen. Oh, then I tried to delete it and listen to it again. Anyway, don't do that. I would appreciate it if you want it to. But don't do that.

Unknown Speaker 33:47
Yeah, so well.

Scott Benner 33:51
The frustrating thing is that if we had people in place to do it, then they could keep up with new episodes. Like then a new episode could come out. And it would almost be like a talent develop like my podcast. You don't I mean, like just these two voice actors sitting back just reading the, you know, like their script. I really do. It's one of the things I really do want to accomplish and I just can't seem to get anybody to get behind it. So

Roxana 34:15
I hope I really hope you get there something soon. Like not I'm not rushing you. But if you can do it tomorrow, I'll really appreciate you. Yeah, any anytime? No, it's just because the fact that you provide so much valuable information and like so. So like layman's terms, like it's like baby food, it's like here, thank you here you here have it and like you can digest it easily. And it just, I would it would be such a value for my family obviously because my family is not bilingual. I'm bilingual but it's because my dad was he was a vet. He was a military so I'm How do you think that you're a

Scott Benner 35:00
military army brat.

Roxana 35:02
Yeah, I'm an Army brat. So that's why I'm bilingual. And I have that privilege of having two languages. And that's obviously that opens a lot of doors. But I just wish like I could, at least that first that episode that you have that that's like for, like, what's it called? That's like for someone like listen to this. If, if you're if you have diabetes, or if you don't know what it's like explaining diabetes, I think,

Scott Benner 35:30
yeah, I know which one you mean. I'm just trying to figure out what episode number it is. Hold on a second. It's it's a part of it's, it's part of the Pro Tip series. And it was asked for by listeners, it's called. I'm looking Oh, it's just called explaining if diabetes pro tip explaining type one. It's episode 371. It's Jenny and I talking about? Like, we just kind of sat down and thought like, what would what needs to be said to people in your life so that they can understand diabetes a little bit? And even just that you said would be really helpful?

Roxana 36:06
Yeah, even just that like them? Learning like the layman's terms like carbs, fats, protein, like, How many times have I said and I know sometimes I can be a little bit rude, but not not to use God not then I'm like, in my daily routine, like sometimes that can be really rude, but it's just the simple fact. Like, for example, I'll be at my mother in law's house. And my son will ask if he can eat some cheese like he'll go to the fridge and he already knows where the cheeses and he's she's like, she'll look at me like with those big with big eyes like scared? Yeah. Can he have cheese? And I'm like, for the 100 billion time can tell she's given cheese like I don't they won't. They won't affect his blood sugars. Like maybe in the future. Maybe if it was like a really absurd amount of cheese. Maybe it would because of the fat

Scott Benner 37:00
eventually would slow as digestion down it might push his blood sugar up, but yeah, but a slice of cheese is gonna be okay. And, and this person in your life cannot commit that to memory.

Roxana 37:08
No, like, it's really rough. It's really rough. Like Father's Day we had turkey. Like when my son didn't want anything, and here, we eat a lot of carbs. Like we're crazy. We eat lasagna with white rice. Like like that's not good, Scott.

Scott Benner 37:32
What's for dinner? We're gonna make a bread salad with lasagna and white rice. Now I would like to sprinkle sugar over top of the entire confection. It's going to be wonderful and

Roxana 37:41
if and if someone makes beans even better yeah, both are

Scott Benner 37:45
just throw beans on the whole thing. With a spoon. Is that cultural?

Roxana 37:50
Yes, that's cultural full, like fully cultural. We would like my husband can't go a day without eating rice.

Scott Benner 37:57
This is part of his it's just part of it. It's like

Roxana 38:00
ingrained in him yeah, not in my in my not in me like in him because he's, he's grown here his whole life. But I can do the pasta I can change like if if we're going to eat pasta. I'll do like the garbanzo one for Fabi chickpeas. Yeah. All do the high protein one. The new I found one that's high protein. That's I think it's smart pasta or something

Scott Benner 38:30
like that. Roxanne I don't want to get too far past this before I mentioned that so far. My favorite part of this episode as you said engrained about rice and of course rice as a grain and I was just planning I was totally tickled when you said that I was like oh rice is ingrained in her husband's diet and then I started wondering like the but I thought like they're like that like is there like a Spanish version of that that we could have used instead? And anyway my mind got very far away from me when you said that I was like so well, are there no other options? Or is it just there are other options but people just don't don't use them?

Roxana 39:12
Um, there are there are many options like we have a lot of options I've done quinoa I've I do the pasta like low low carb pasta. But pasta usually doesn't affect his blood sugar's as much as rice would we change the rice for basmati? And that's that's made a real change my sent my oldest doesn't love it, but he won't. He won't say anything about it but a

Scott Benner 39:40
little drier, I think is what I want to say basmati rice. By the way. I think the boss Mati rice industry owes me money but that's just neither here nor there. I said one time like I find basmati rice easier and Arden's blood sugar and now like, you know, and that was sold out. And there's a culture of people who are like honestly If I should, at least an ad or something right or a Christmas card, even from Whoever sells basmati rice, I'd like to hear from you. Well, that's excellent. Like, I mean, it's excellent that you're making changes and you're doing things but it's still, it's just prevailing. It's, it's not, it's not going away. So you have to learn how to Bolus for these things. And your doctor was telling you don't Pre-Bolus Because you don't know what he's gonna eat.

Roxana 40:24
Yeah, he was like, No, don't know. And it was, it was really upsetting frustrating. Because when Fabi was diagnosed, our first Endo, she gave him and pH. Really NPH. And our,

Scott Benner 40:44
you know, I just talked to a grown man last night who was given that,

Roxana 40:49
like, was diagnosed in 2021. It's not like we're not like, why are we giving toddlers this insulin? And I asked her about it. And I was like, Hey, do you think we can change his insulin? Because I don't see him like being stable ever. Yeah. And she's like, No, because those are the insulins that we recommend for toddlers. And I was like, Okay, well, then I'm not going to schedule another appointment.

Scott Benner 41:20
Did you switch doctors?

Roxana 41:21
Yeah, we did.

Scott Benner 41:22
Good for you. Hey, real quick, a second ago. You paused a long time before you found upsetting and frustrating. Did Spanish words pop into your head instead? When you what pops into your head? A bad Spanish word? I'll just say because we can curse in Spanish. But what? What popped into your head?

Roxana 41:41
I thought why in carbona? I was so pissed off.

Scott Benner 41:45
Can you tell me what it means? I'll bleep it out.

Roxana 41:49
Like in Ghana means like, pissed off. But here in English. It's not a bad word. But if I say that in like a public place, like people will look at me weird.

Scott Benner 42:01
Oh, I see. It would seem harsh in public. Yeah. Oh, I see. I say Oh, okay. I could just tell like, there was a moment where you, you reached for a word, and you found one in Spanish. And then you were like, upsetting? And so? Yeah, that's really interesting. Wow, it's such a so it's so amazing to be bilingual. Like, just, it's a real gift. It really is.

Roxana 42:25
Yeah, it is. I love it with my son, my son's bilingual also. And me and my son, my oldest, obviously, my toddler. He also knows a lot of English words. But my oldest he has a sense of humor. Like he's getting into that personality person adult, not Oh my God, help I got

Scott Benner 42:43
personality. Thank you.

Roxana 42:45
And like, feeling like, free like he can express his what he's feeling and all of that. And like he'll, he'll talk to me and he'll talk to me like half in English and then half in Spanish. And then my husband will come out ahead the rooms like, are you guys talking about me?

Scott Benner 43:06
Be fair, do you talk about your husband in English.

Roxana 43:09
Um, sometimes. I'll, I'll My, my, my husband, he likes. He likes to think or imagine like, nobody lives in this house. And he wants it to be always like, clean

Scott Benner 43:25
and organized. You're gonna have to give up on that. If you have a kid. Yeah,

Roxana 43:29
I'm like, You're gonna have to like, move us out.

Scott Benner 43:34
If you put us outside the house, we'll get cleaner.

Roxana 43:37
Thank you buy another house, we'll use that house to live in. And you can live in this one that's always like organized. Do you can you can do that.

Scott Benner 43:44
I remember when I came to that conclusion, when my kids were young. And I thought, listen, we live in this house, there's just, there's either enough time to live in it or keep it clean. Not both. Just as they get older, it gets easier. You know, if you're, you know,

Roxana 44:00
I'll usually tell my my oldest, like, clean your room or pick up your shoes or something

Scott Benner 44:06
we used to have, we still have a rule where if you went to your room, you took something of yours with you. Nobody ever walked to the room without something in their hand. Like grab this grab. As a matter of fact, we were cleaning up for our son's graduation party recently. And my wife said to my kids, like you guys remember when you were little we used to say Hey, pick three things that are yours and take it to your room right now. She's like, do that and keep doing it until all your stuffs out. But anyway, that's great. So not a lot of differences. What kind of you said you stopped working but did you go back or no?

Roxana 44:41
I kind of went back in February of this year, I I was selling brownies. Like I was doing like the side thing and like trying to get some income to pay at least some of my things. And I was selling brownies and making cookies and I went to a former school that I worked at. And my boss at that time, she was at the front like she was at the secretary. She was like, Hey, we don't have a secretary. And we don't have a science teacher. What are you doing? And I'm like, Well, I'm at home, but Fabi has type one. And we really don't have anyone to take care of him. And I don't think this is a good idea. And she was like, no, if you want, if you want all contract you and you can bring Fabi Oh, wow. So and I'm like, Yeah,

Scott Benner 45:36
did that work? Like were you able to accomplish that?

Roxana 45:38
Yeah, it kind of worked. I want to say it did. But I really didn't. It was really rough. Because, okay, Fabi is with me, I can see his blood sugar, I can see I can take care of him. But like we were in like, we were in a classroom all day. Yeah, from eight o'clock till three o'clock. And Fabi was he like, I'm not lying. He he did good. Like he was, he was being good. But at times, he would just be like a regular kid, he wanted to go outside. He wanted, he knew there was a park there. So we would go to the park, he would play with my students. I taught seventh through 12th grade. And he wanted to play with my students. And most of them were really accepting of folly in the classroom. And at the end of the school year, they were like, We're gonna miss him if he doesn't come next year. And I'm like, but I'm not cutting.

Scott Benner 46:32
This didn't work for me. Well, you basically had two jobs at once you taking care of them. You're teaching these kids

Roxana 46:38
and teaching. Yeah, it was rough, because sometimes I would be on the whiteboard. And that's when I decided that I wasn't ever going to write on a whiteboard. Again. I would start writing something. And Fabi would take a marker and he would start writing also. And I would be like, half the half the board written and half the board would be raised because Fabi would erase it.

Scott Benner 47:00
I can't see how I mean, to be perfectly honest. It's nice that they wanted to be able to I mean, I guess it sounds like they were stuck. So they were willing to make concessions. But

Roxana 47:08
yeah, they were they were in need, like they were really in need. And I started and I did, I did what I could, and I was about to like, not return. At some point. I was like, No, I'm not doing this again. But I was like their fourth science teacher. So it was also rough on them as students like having so many teachers on in one school year. So I was like, No, I'm not gonna give up on them. Let me just like push till the end. And we made it until the second week of May. And I said goodbye. That's, that's all. That's all for this year. I

Scott Benner 47:42
can't do this anymore. It's interesting. Well, I hope that things changed a little bit. Maybe you can find a place for Fabi to be with like daycare or like some kind of care with a family member and that maybe you could Did you enjoy the work?

Roxana 47:56
Yeah, I enjoyed it. I it's just the commute was a little bit long. Usually here in Puerto Rico, there's a lot of traffic jams. And I don't know if it's because there's so many cars or everyone goes to work to the same area. Okay, because more there's more opportunity to work obviously. It's really draining like it's it's like a one hour commute and then an hour almost an hour back

Scott Benner 48:25
in like stops that standstill traffic. How far how many miles? Would you go in that hour?

Roxana 48:33
Like, how many miles per hour? Or how many miles to get to my job?

Scott Benner 48:36
Yeah, how many miles to get the job?

Roxana 48:39
I wouldn't be able to answer I have no idea. It's not like I can I can Google it. It's not that far. Like if there's if there's no if there's no. How do you say that like congest there's no traffic, like, let's say a Sunday afternoon. And I want to go like to the same area or the same town that I worked at. It's like a 30 minute drive maybe 25 out much. But since that the when it's when it's like the weekdays. It's just a little bit harder. No, I understand.

Scott Benner 49:11
Yeah. No, then it just adds to the day. And then your husband's working too. Right. So yeah, my

Roxana 49:17
husband's a police officer here in Puerto Rico.

Scott Benner 49:19
Oh, wow. So who does your 12 year old stay with if your husband and you are working? Because that I guess that's a problem to

Roxana 49:26
school. He's at school or? Or he's with me or he's at score and he's with his dad because he's not my husband, son.

Unknown Speaker 49:35
Oh, okay. I see.

Scott Benner 49:38
So, how has diabetes been in this in this first year? I mean, it sounds like you're doing incredibly well. Honestly.

Roxana 49:47
Um, it was rough at first. Like. I remember like when they when the doctor told us, he told us he told us. He told us the scientific word. for Taiwan, diabetes, Mala whatever, I don't even know the word diabetes mellitus, something like that. And like my husband and I looked at each other and hmm. And then he used layman's terms. He was like, No, he has type one. And then my husband cried for the first time ever. I don't know. Never seen him cry. How long have you

Scott Benner 50:21
been with him? About 10 years? 10 years the first time you saw him cry? Yeah. Really? Not at your wedding. Not at the birth of a kid. No, no, no. And he was inconsolable.

Roxana 50:36
He was he was crying. And I was like, stuck it up.

Scott Benner 50:41
That's why he doesn't cry because he didn't want to get yelled at.

Roxana 50:46
He doesn't know he didn't. He cried that day. And we just pushed through it. I obviously, this technology helps a lot. And I just Googled everything was like, What are we going to do now? Google Tell me, what are we going to do?

Scott Benner 51:03
What's what's the first thing you figured out?

Roxana 51:06
I figured out that we did not want Medtronic pumps.

Scott Benner 51:11
Okay, and you got that from like, like social media,

Roxana 51:16
from media from reviews from Reddit. And like most like when you go online, and you look up type one diabetes, and you look up any like pictures or anything, like usually they have or T slammed tandem or they have libre, and, and the Dexcom. And usually, usually at the end DOS, office, they they have a lot of like libre advertising, okay? They don't have the Dexcom advertising. But I figured out Dexcom so I pushed my pediatrician to get us Dexcom. But it was like it was rough at first because I didn't know what to expect. And I usually like to know what to expect. I like to plan. And so it was difficult for me because because I had to figure it out alone.

Scott Benner 52:07
Do you have good health insurance to your husband's job?

Roxana 52:12
We have this the the state like with air quotes around it because we're not a state. But yeah, we have the the one that they give us here for free. And it's an it covers everything. Oh,

Scott Benner 52:27
cool. That's excellent. Yeah. Yeah. Okay, so you got technology pretty quickly because you use the internet? And, but how do you figure out how to use it?

Roxana 52:37
At least and what part on the on the Omni pod?

Scott Benner 52:41
Yeah, I mean, just start with an app right? Like, is the doctor walking you through how to use the insulin pump? When we

Roxana 52:49
got when we got the Omni pod? We got it in August. So I'm gonna say like six four months after diagnose August Yeah, for months, we got and we we got set up with like a person that explained like what we're going to do and like how we're going to put the Basal rates in because obviously, we weren't looping. In August, we were just regular with PDM and the regular Basal rates and all that. And like we were with him for about like a week. And then my son decided to take the PDM and throw it in the toilet. Oh. Great. Great start. So when that happened, I called him I'm like, Hey, we're not gonna be able to continue like talking because I don't have a PDM so I'm just gonna wait out the politics buyer and take it off and go back to NDI which we weren't doing bad with MDI. But it was just frustrating to go back. So when the PDM is flushed, we go back to MDI. And it was like about a week and a half or two weeks before we got a new PDM and then we started all over again, and this time we used to I started alone, like I didn't call him to tell him hey, I got a PDM Can you help me? I was like, No, yeah, because he was being way too conservative. And he was my son was running high like most of the day in the 203 Hundreds and I was just freaking out.

Scott Benner 54:24
So they set you up on a pump but gave you week settings that were leading to and were you Pre-Bolus thing at that point too. Yeah, we were Yeah, so the settings are just weak.

Roxana 54:35
The settings were just way off like he had us at point 10 Basil Ray and his card was like one two. I want to say at what was this?

Scott Benner 54:49
How did you know what to move them to? Did you just try something or did I just

Roxana 54:53
I just listened and listen to your to the to the Basal one episode where the basil one and then I listened into you have another one like the perfect Bolus. And then I just read a lot like I read and read and read and like I hyper focused on getting it right. And we're still far away from like, the 90 in range percentile. Like we're still at 75 ad.

Lija Greenseid 55:23
Max. And did you send me a lot of panic messages in the beginning?

Scott Benner 55:28
Was that you? Yeah, it was right. With me, like, what? I just brought it up. So I could, I could ask you what it's like to, to know that something needs to be fixed, but not have any idea of how to handle it.

Roxana 55:44
Yeah, one of the messages I sent you, I was like, freaking out. And you just said, You're so calm, like, you're so zen. Like, Hey, do you think you can like, maybe, like up the basil like point 05 And see what happens? I'm like, Okay, I'll do that. And I did it. And everything changed. And everything was in range. Again, I'm like, Ah, I could have done that.

Scott Benner 56:12
Right, Roxette, I don't know that I'm incredibly Zen or anything like that. I just think that when one person seems upset, it's not great for the second person to be like, Oh, my God, you know, like, it just somebody has to just, you know, just go through the steps, you know, like, well, this isn't working. What would happen if you tried this, and I mean, point 05, even with a really little kid. I mean, that's, that's a very small move. And you were describing higher blood sugars, that I just couldn't imagine that that much of a change was going to make a low blood sugar, right, like, so let's see the impact, and then make a decision on what to do next, based on this impact. And, and you were able to do that, which is really great.

Roxana 56:54
Yeah, you, you, you were like, I don't know, like when I wrote you the first time, I was skeptical. I was like, He's not gonna read this, he has to have like, 350 messages on Instagram. And his email has to be like, really ridiculous amount of email. So I was like, I'm gonna write see what's going on, see if I can get something like and that was it. And then after that, I think I messaged you again, and like, I sent you a graph because he was going really high after eating. Right? And I think we just like did. We did like, sorry about that. We did like, carbs ratio, range. And then that was it. And then we got back again. And like, now, as I look back, I don't like I do stress, but it's not like I'm gonna die like that. The for at the at the beginning of diagnosis. It's like, okay, I'm going to stress because he's going high. But it's okay. Let me see what I can change. Like, because when we've started looping, looping is really aggressive.

Scott Benner 58:06
Or using auto Bolus? Yeah, where you

Roxana 58:08
bought a bottle Bolus. And it was being really, really aggressive. And I'm like, Oh, my God, what's going on? Am I gonna hate this? And then I got into the loop group, and then I got to a little loopers group. And they helped me out a lot. So it's like it's been, it's always like a learning process. And I guess people that see it from the outside or see it from afar, they see oh, yeah, they're doing great. But it's really rough.

Scott Benner 58:38
Sure. It's a lot of frustration. And it's a lot of fear, too. Yeah, just if I do this, what's going to happen? I think is the is the biggest concern, and the only thing that pushes you is that not doing anything seems to be bad as well. So you start, you start thinking like, Well, I mean, can it get worse than this, you know, than the 300 blood sugar all day long. I mean, to give you a lot of credit for, for being able to push through that it's a it's not an easy thing to do. I guess it's a function of, of kind of being alone, right? And feeling like if I don't do something nobody else is going to.

Roxana 59:16
Yeah, it's literally that feeling because one time when I talked to my husband about like, hey, I need you on my team, I need us to like be on the same path of his care. Because sometimes that obviously me being a stay at home mom and knowing everything that goes on and one day he he was lacking. But now lacking in the sense like I don't want to know anything about it. But it's because obviously he's working. So when I talked to him, he was like, well, then you have to make me a list. And you have to tell me and you have to do this and like, I'm like I looked at him like dead in his face. And I was like, no one did that for me.

Scott Benner 59:56
You gotta figure it out the same way. I did. Yeah.

Roxana 1:00:00
but you're gonna have to read, you're gonna have to do your research like Do whatever you have to do, but you're gonna have to do it is He? He's, he's figured some things out like he knows like we we have different bread for for Fabi because like regular bread is like really bad. I'm sorry about that.

Scott Benner 1:00:19
No, you're fine. I don't know what you're apologizing for so I didn't hear anything. Okay, that's good. But what? Tell me what?

Roxana 1:00:26
nation went off?

Scott Benner 1:00:28
Oh no, you're fine. Don't worry. So yeah, like so you actually have a bread in the house? It's for Fabi and you have one that's for everybody else.

Roxana 1:00:35
Yeah. But usually we just eat whatever's available like if Fabi is the one that fabious Bread is there. We'll just use that one. So, I tried to do alternate alternate alternate alternative alternatives. Yes, thank you. Because white bread is the devil saltine crackers are the devil. Regular white rice is the well, we didn't try and I tried to obviously help him like, Hey, babe, we don't use this rice. We're gonna use this rice or, Hey, I did this. I have everything set up. But usually I don't leave the house very much. And if we do we leave as a family. Okay. But it's a lot of stress. Like I my brain is like thinking of like everything that we have to take if we're going out.

Scott Benner 1:01:22
We you started to talk earlier about maybe being because you have some anxiety. Oh, yeah. Did you have it before diabetes?

Roxana 1:01:31
No, not as intense. But I've, uh, but I know I do have it like, because I do like to plan like I mentioned earlier, I like to plan everything. But it's just because I hate the I hate like the like the like the weird silence for so for example, like that weird. Like, we don't know what we're going to do and where we're at. I hate that. And I like we went to Disney. I know this is way off topic. But we went to Disney and I had everything like really, really planned out of everything we were going to do. But this certain day, my husband decides no, we're going to be adventurous and we're going to animal kingdom. And like on a Saturday.

Scott Benner 1:02:16
How did that mess anything up?

Roxana 1:02:19
And he's like, Yeah, we're going to Animal Kingdom on a Saturday animals like okay, you okay? I'm gonna trust you. We're gonna go and we're gonna have fun. We weren't even like an hour in. And I looked at my toddler and he hands me his decks comps, his like, could the sensor like he took it off and he hands it to me. He pulled it off. He pulled it off.

Scott Benner 1:02:43
Well, that's not that's not animal kingdoms fault. Is it?

Roxana 1:02:47
animal kingdoms fault? Because that wasn't the plan.

Scott Benner 1:02:50
Oh, rocks. Little do you have a little OCD.

Lija Greenseid 1:02:55
Now maybe. But you do. Okay. Well, your husband being a cop, though. What you do okay with your husband being a cop?

Roxana 1:03:04
I feel okay, because he's not working like and high risk area. He used to work in a high risk area when we started dating, but not anymore.

Scott Benner 1:03:12
Did it bother you more than? Yeah, I

Roxana 1:03:14
did. Okay, I wouldn't. He used to work in the area where there was a lot of like nightclubs and a lot of nightlife like gangster nightlife. And yeah, I would be like wrecked, I wouldn't sleep, I would be like texting him is everything. Okay. We I've worked on it. And I do have, like I mentioned earlier about the appointments. I do you have an appointment, like and I think in about two weeks, because I know I have a really high anxiety but it's just because I want to be prepared. And I know that and I know that's like really counter controversial, right?

Scott Benner 1:03:54
Well, no, I mean, I understand wanting to be prepared. And I realize and I but I do want to be prepared or are you trying to stop unknown problems?

Roxana 1:04:02
Yeah, I want to stop a new problems. Definitely things don't

Scott Benner 1:04:05
work that way. You have your preparation is is the end of it. Like you're, you have the things you need. And if something goes wrong, then you go to the the knowledge you have and start implementing what you know, and you do your best with it. But you know, I know you know this, but you don't want it to to impede your life or, or if obvious life you don't I mean,

Roxana 1:04:29
yeah, I know and I try my best like to tone it down. And I do recognize that I do need to get like some sort of help on that part. But um, it's just hard. No, I understand. And I and I started and I when I sat down, I said I wasn't gonna cry today, Scott, so I

Scott Benner 1:04:51
make you cry.

Roxana 1:04:54
I'm just like, holding back.

Scott Benner 1:04:56
Well, you can cry if you're like, Hey, do you do you cry in Spanish?

Roxana 1:05:01
How'd you cry in Spanish?

Scott Benner 1:05:03
I don't know. I'm just being silly.

Roxana 1:05:06
I'm trying to figure that out. How would that sound?

Scott Benner 1:05:08
Does weeping have a tone?

Roxana 1:05:11
I don't know. I cry in silence remember in the bathroom? But yeah, I think I do like over exaggerate situations and not on purpose though, right? Yeah, not on purpose. Like I just like, for example, like, well get in the car. And, and like, I'm like going through my mental list of things that we have to take insulin at this and that and juices and a change of clothes, and anything like I can think of, and like, we'll get to the place and I'll say, Hey, did you bring? I don't know, the stroller, for example. And he's like, No, I left it in your car. And it just like it wrecks the rest of

Scott Benner 1:05:50
the day, for you or for everyone.

Roxana 1:05:53
No, no, not everyone just for me. Like I don't. I do have a sense of awareness that I cannot let my emotions or how how things affect me affect others. Because obviously, that's not their problem. Like, hey, we don't have a stroller, but like the little kid can walk like can you walk can walk, he can walk, right? Let's just get over it and keep going. Yeah, and yeah, but some things do really affect me like, on a higher on a higher level than maybe most people.

Scott Benner 1:06:25
I remember walking to the beach one time with my young family and my wife and she had brought, I'm going to say everything we owned. And, and I at the time,

Roxana 1:06:36
if she if she? If she loved me and I because we bring everything to the beach.

Scott Benner 1:06:45
No, she's, she's anxious sometimes, too. So yeah, so she's trying to cover all her bases as well. Like, what if we need this? Or what if we need that? Or, you know, I would say to her like, it's fine. Like we don't? Like when's the last time you use something like that? Like, I think sometimes even that's what like hoarding is a little bit like that fear of like, what if I need this? And some people can hear well, we haven't touched it in 12 years. I'm guessing we don't need it. And go, Oh, that makes sense. Throw it away. And some people think no, but tomorrow could be the day. You know, and that's a shame that is a that's a difficult thing to live with. You know, I spend it's different in you're not wrong. It's difficult for other people to who are like, Look, can the kid just walk like, look, he's walking, he's fine. And you're like,

Roxana 1:07:33
and they're telling me this? They're telling me hey, it's okay. He can walk. He wants to walk and I'm looking at the time. And I'm like, No, but it's it's like almost almost

Scott Benner 1:07:42
you create a different problem that yeah, like so. The first problem is we need the stroller. We don't have the stroller. Oh, that's okay. Okay, can walk well, I'll make a different problem now. So he's walking, but it's not happening fast enough. So now we're now

Roxana 1:07:55
or if not, it's like, it's almost two o'clock. And I know it's almost nap time. So I know he's gonna get cranky, and he's walking. And if he falls asleep, he's like, he almost weighs like 45 pounds. So who's gonna carry him? I'm not gonna carry him. Are you gonna carry him? Yeah, that's my,

Scott Benner 1:08:09
when he fell asleep. Did your husband carry him? Yeah, because I'm not gonna shut up. That's not a problem then. Right? Like, it was? Like, do you think your husband wasn't gonna walk away and leave him like, on

Roxana 1:08:23
my husband, he's like, a godsend. Like, we are total opposites. Like, he's really calm. And he's like, He'll do whatever it takes to make people happy. He is. He has a little bit of people pleaser. And him. Yeah. Yeah. But he's like, really the opposite. And we just complement each other very well. Like, I'm very grateful for him. But he he gets on my nerves sometimes when he forgets things,

Scott Benner 1:08:49
because he doesn't do everything perfectly the way you would do it. Yeah, yeah. And

Roxana 1:08:53
that's my problem. Like when letting go. That's, that's why your podcast obviously is would be very helpful in the near future when it is in Spanish. I could just play like, getting basil right on and play and like he'll go he likes to run like he likes to exercise so he can like put his little earbuds in and listen and then listen to another episode. And even my, my my mother in law and my father in law, like they can listen. Because they're based on like, they're they do it on purpose. I understand. Yeah, they're just got it. Yeah, we they're not in they're not old either. Like they're in their 60s like 50s 60s Almost. So they're very they're very How do you say that like,

Scott Benner 1:09:43
yeah, together and active and they understand.

Roxana 1:09:47
They come come to my house and we'll go to their house like they're very active in Bobby's life. But I wish that they were active like in other areas to also not just like, hey, we're here. We're going to be here. I get our visiting and then we're leaving, like, because that would that would give me a little bit of free time.

Scott Benner 1:10:07
Do you think you need a break? Excuse me? Do you think you need a break? Oh, yeah, yeah, long time. Well, how are you doing in this last? I mean, we've been talking for an hour now. Do you feel okay that he's not with you?

Roxana 1:10:19
Yeah, I'm okay. Because I see the his numbers on my screen. So

Scott Benner 1:10:24
is there a reason we couldn't do this more often? Like, like, like, let your mother in law watch him for a little bit. So you could maybe go somewhere?

Roxana 1:10:32
Um, yeah, I could, I could make that happen.

Scott Benner 1:10:36
You know, I mean, if you need a break, and this setup is working for you, then do it more often than take a minute.

Roxana 1:10:45
I was I wrote on the Facebook page, like I needed to switch as Dexcom to another cell phone. So I can get low loop setup on other cell phone also. Because my cell phone is the one that's that's everything. Everything is connected to so it has Luke has the dex home It has everything. So that's why I haven't like totally on unlatched, I guess. But I think when I get that done, and maybe when I get the Nightscout done and have the the the remote Bolus setup, I could, I could do that. I'm making a lot of a lot of excuses.

Scott Benner 1:11:23
I mean, listen, I understand anxiety. And I understand especially with a toddler type one new diagnosis, all that stuff. But if you're recognizing it, you should take some steps towards mitigating it if you can, for your own, like sanity and for the people around you. You know and for him, so he doesn't grow up. Like an anxious ball of nerves. Always worried something's gonna happen too.

Roxana 1:11:47
I'm, I have a I mentioned it earlier, I have an appointment coming up. And I will talk about that with the doctor. Obviously I do it non non mostly. I know my toddler senses my energy and like he's like in that same high as I am sometimes. But mostly for my for my, for the oldest. Yeah,

Scott Benner 1:12:10
that's good. Like, is this a therapy appointment? You're going to? Yeah, good. Good for you. It's excellent.

Roxana 1:12:16
Yeah, because it's rough. Like and my and my oldest, I don't know if he like, if it's, he's masking it. Like he doesn't want to like, Tell me about it. But I can see his face. And I can see like him trying to solve any type of problem with Fabi. Like if the alarm goes off, and he already and the point is that not everybody knows that. The alarms on the Dexcom don't all sound the same, like the low alarm sounds different. The high alarm sounds different. The will if you're going up really fast if it's going low really fast. And my my oldest he knows all of this.

Scott Benner 1:12:54
Excellent. But he's trying to protect you you think?

Roxana 1:12:57
And I don't know if it's me, or if it's more because of Fabi because he really does love his brother like not because they're brothers obviously. But like I do see that care for him. Like he's at his dad's house right now. Right? And he and he asked me Mom, can you turn on the follow app? Like I'm not gonna turn that on? And he's like, please. Oh, he's worried about him too. Yeah, he's really worried about notice

Scott Benner 1:13:27
anxiety with your older son in other ways.

Roxana 1:13:33
And the planning like Hill Hill last week when we were at school like Hill take his you know, this is not This is normal, but I don't I don't know a lot of people that do this. But Hill. He'll have his snacks ready for the next day. Like he'll already take his snacks out for the next day. He get his water water ready. He'll take out his clothes if he needs me to iron his pants because he does use uniform. He'll tell me like, hey, I need to I need to iron these pants. And he'll have everything like setup. And if he can, if he can have his backpack in the car the night before we leave to school, like the night before school day. He's like, yes. That's happiness for him. Yes, that's happiness.

Scott Benner 1:14:22
Yeah. Well, that does sound a little. A little concerning, but maybe not. Yeah.

Roxana 1:14:28
And when, like when you think about it, he's 12. Like he should be petting his backpack.

Scott Benner 1:14:35
Not planning for it for three days from now. Yeah. Oh my gosh. Well, Roxanne, I'm having a good time talking to you. But I'm up on my time. So I'm wondering if we've talked about everything that you wanted to talk about or if we missed anything?

Roxana 1:14:48
Um, no, I think we're good. I've mentioned like a billion times that translation of the podcast I know you're gonna get that done because you're you're Scott. So

Scott Benner 1:14:59
I feel like I I'm married to you now. Like, you know, like, listen, take care of this, okay?

Roxana 1:15:05
Like, I trust you, like, another level. No, I'm like, seriously, if that can get done sometime like I don't even, I'm not even putting like a time limit on it like, Scott, it's, it's in your hands?

Scott Benner 1:15:21
Well, well, I want to find some people with some deep pockets and push them.

Roxana 1:15:25
Yeah. And I'm like, I'm a stay at home mom. So if you need to hear if I need to hear like an episode in Spanish, I'm I'm here for it.

Scott Benner 1:15:34
Do you really think people would be able to find it? Like because it would exist inside of an English speaking podcast? I mean, it would be word of mouth that we'd have to get around. Is there that kind of structure in the Spanish speaking community around type one diabetes?

Roxana 1:15:50
That's another thing like, we don't have an IV? And I would, I would do it. But I just don't think I'm, I'm up for it. Because I do see that I'm the dynamic in your Facebook group. And I see how everyone is real cordial. And some people are asking, but not all of them. And people get rid of them. Like you have, like this super structured group that you didn't structure? I don't know if that makes sense. Like, that's put it out there. Here's my group and like, Take care of yourselves and, and be cordial and be kind. And I don't think that's something that would happen in in, in a Facebook community, like here?

Scott Benner 1:16:36
Well, I don't know, it's uncommon, it's uncommon, and a lot of places, honestly, it's, you know, I had the podcast to base it off of, and I just sort of laid it out there and put my vibe overtop of it. And people picked it up and kind of ran with it. So. And there have been times where I have had to surgically step in and be like, like, No, you know, but not that frequently. And, and I've, you know, I've set a tone where people are adults, and they should take care of themselves. And they, you know, they don't need me or somebody else to tell them, you know, what to say or what not to say?

Roxana 1:17:12
I would I would want it, I would want it to exist here. Like because there is no, no community, like type one community here in Puerto Rico, like, I haven't found it online. I haven't found it on Facebook. But they would, it would be great for everyone like because I know like another T one D? because he lives here in the same town I that I do I know another to Wendy because she's my best friend. But, like, community wise, like there's not much of that. So it would, it would obviously be like a lot of promotion, like a lot of Facebook ads or trying something new to get it around. But I think a lot of people need it. A lot of people need to know that. It's that it is difficult. But it's not impossible. Like yeah, I know, rice is difficult. And I know you eat it every day. So let's get a hold of it. And let's measure it out. And let's see how it reacts. And things simple things like that. So I would have a lot of impact. It's just, I would I, like I mentioned, like, a Facebook group here in Puerto Rico, like it would be very difficult. Starting at the point like where people? Like if you tell them something I know you do the whole like, I'm this isn't medical advice. Right? People don't really. I'm not offended people get I don't know how to say like people get oh, you said it was gonna be okay kind of thing, you know?

Scott Benner 1:18:43
Oh, yeah, I don't need that problem. I don't know anything. Okay. And I'm not a doctor. And this is not

Roxana 1:18:53
like in a Facebook group. Like if, if if you were to create a Facebook group, like, specifically in Spanish, for example, it would it would be a little bit like, more hands on, like, there would need to be a lot of people like promoting kindness and promoting being helpful with others not because we're not helpful. It's just because we have our own opinions. And usually our opinions are really strong.

Scott Benner 1:19:20
I see. All right. All right. Well, I'll keep thinking about it and try to figure out a way to do it. And you can keep doing your thing over there. It's all it sounds like listen, to be perfectly honest, for such a short time with diabetes, you're doing really well. I know it's not easy. And I know that it seems like it's crazy right now, but I think it gets easier as you go. You know, maybe it's not easy as much as you get better at it and it starts to feel easier. But I think you'll find your way it sounds like you're off to a great start. What's his one say?

Roxana 1:19:53
6.8.

Scott Benner 1:19:55
That's very good. You're doing great. You really, I mean, a two two year old with a say exceed eating all that food that

Roxana 1:20:03
doesn't have like, he has restrictions like on some things, like obviously really sugary things like doughnuts or something like that. But like on the rest of it like I just tried to do my best. I'm like attack it not all just crashing catch it.

Scott Benner 1:20:18
Are you good for you? Well, thank you so much for doing this. Roxanne. I really appreciate it.

Roxana 1:20:23
Thank you, Scott.

Scott Benner 1:20:24
Yeah, hold on one second. Okay. Okay.

Hey, thanks so much Roxanna for coming on the podcast and sharing your story with us. And thank you Dexcom for making the Dexcom G six and now Dexcom G seven continuous glucose monitor dexcom.com forward slash juice box. Of course, the Omni pod dash or the Omni pod five are available at Omni pod.com forward slash juice box Use my links if you have any interest or if you're just trying to learn a little more. If you can't remember those links there juicebox podcast.com. But I guess then you'd have to remember that link. So why don't they just put the links in the show notes of the audio app you're listening in? That's what I'll do. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#853 After Dark: Sexual Assault and Foster Care

ADULT TOPIC WARNING. Sexual Assault. TRIGGER WARNING: This is a frank discussion with a female assault survivor. Amanda has type 1 diabetes and she has overcome a lot.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 853 of the Juicebox Podcast.

On today's episode of the podcast I'll be speaking with Amanda she has type one diabetes, and a number of things have happened to Amanda throughout her life that are going to be difficult to listen to. I just want you to be aware of that upfront. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan or becoming bold with insulin. If you are type one or have C now I'm all thrown off by this. If you have type one diabetes and are a US resident or are the caregiver of someone with type one, please consider going to T one D exchange.org. Forward slash juicebox. So you can take the survey when you complete the survey, your supporting type one diabetes research can do it from your home it is very simple. Will take fewer probably than 10 minutes about what it took me t one D exchange.org forward slash juicebox. Again, I'm I don't want to sensationalize this, but you know be ready

this episode of The Juicebox Podcast is sponsored by touched by type one to see an organization helping others with type one diabetes. All you have to do is go to touched by type one.org and find them on Facebook and Instagram touched by type one. today's podcast is also sponsored by us med now us med is where Arden gets her diabetes supplies from and you can too. Just go to us med.com forward slash juice box or call 888-721-1514 To get your free benefits check. Hey, and do you know what US med just got? The Dexcom G seven that's right you can get the Dexcom G seven G six the FreeStyle Libre two N three systems all at US med. All that and a lot more at us. med.com forward slash juicebox

Amanda 2:24
My name is Amanda and I am 27 years old. And I've had type one diabetes for almost 17 years.

Scott Benner 2:34
How's that your work? Were you 10?

Amanda 2:37
Yep, I was 1010

Scott Benner 2:39
for 17 years. You're 27 type one. Any other stuff? You get a fun celiac thing or anything like that. I have Hashimotos you go so you got a bonus thing? Oh, yeah. You don't want to just I mean, if you just have one? Yeah, when he just had diabetes. How boring with that. Exactly. Hashimotos was diagnosed with

Amanda 3:05
I think I was around 14.

Scott Benner 3:08
Okay. Took a couple of years. How about other people in your immediate family? Mom, dad, Sisters Brothers? Do they have anything autoimmune?

Amanda 3:18
Um, I have a first cousin on my dad's side that has type one. And then my mom and grandma. I have a whole bunch of people in my family that have Hashimotos.

Scott Benner 3:30
But on you're interesting, isn't it on your mother's side? The Hashimotos on your dad or vice versa? One side house? Yeah. So I typed

Amanda 3:37
on my mom's side is the Hashimotos. And data's diabetes.

Scott Benner 3:41
Do you think people with autoimmune diseases put off a beacon that attracts other people during dating? I mean, how often do you listen to the podcast? Somebody's like, yeah, I have type one but my husband's family has and you're like, really? Like, you know how many people you you know, you don't? Maybe it doesn't seem like that. If you listen to the podcast, you have type one, but not everyone has autoimmune diseases. So you know what I mean? Like, but it's interesting how many times that kind of pairs up like that. Do you have?

Amanda 4:12
I have one. Does that kid have anything? No, she is only 14 months old. So nothing so far.

Unknown Speaker 4:20
Do you meet a baby? That's lovely.

Amanda 4:23
Thank you. She's adorable.

Scott Benner 4:25
gratulations that's wonderful. 14 months. Yes, you're maybe Are you coming out of the other side of the exhaustion and the craziness.

Amanda 4:34
I thought I was and then she just got worse.

Scott Benner 4:40
How did she get worse?

Amanda 4:42
Oh, she's just been waking up in the middle of the night and just not a not wanting to cooperate when it comes to sleep right now.

Scott Benner 4:52
You'll get her nice and settled then she'll have a tooth come and then that'll start.

Amanda 4:57
Yeah, that's what I'm wondering if that's what's going on. But it. Who knows, you know, it's like Are they sick are the teething what's going on? Pro pro

Scott Benner 5:05
tip? Sometimes the cutting of the teeth comes with diarrhea, like as a speaking of bonuses. Oh, so much. A little extra. You're married? Is that correct? Yes. Yeah. How long?

Amanda 5:19
Only four years in June.

Scott Benner 5:21
Okay. All right. I think we understand who you are, generally speaking, let's find out who you are in a more detailed way. So I guess I want to know first about being diagnosed at 10. Because that seems like an interesting age.

Amanda 5:37
Yeah, that was definitely a shocker for me. But I was just sick for a long, long time. I think maybe I had a stomach virus and it just kind of never went away. My mom was actually an RN in the ER at the time. And it had went on for so long that she took me in. And we went to the doctor's lounge, and she got one of her doctor friends to come back. And he took one look at me and smelled my breath and said, Cindy, she has type one diabetes. So it was very, very shocking.

Scott Benner 6:12
Do you think he builds your insurance $5,000 to smell your breath? Probably. We performed significant testing on the kid definitely has diabetes. Do you remember much? I know why you're on the show. So everything I want to ask you seems like it should be prefaced. So Oh, yeah. Why don't you tell people what made you want to come on the podcast?

Amanda 6:37
Well, I saw in the Facebook group that you had posted about getting more after dark episodes. And so I reached out because I grew up in my teenage years in foster care and group homes. And I just thought that would be beneficial to people to understand what that was like.

Scott Benner 6:57
Can we find out first how you how you got there? Oh, yeah, for sure. So if you're 10 When you're diagnosed, and it sounds like your mother's a nurse you were you talking about your birth mom or a foster care, mom?

Amanda 7:09
Yeah, no, that was my my real mom. And everything. I hate to say everything, but all the reasons that I was in the group home was stemmed from my diabetes.

Scott Benner 7:23
Really? Because Amanda, let me tell you, have you ever watched shameless? Oh, yes. So I'm like four seasons into shameless. So while you're talking, I was like, Oh, this is definitely about math, and alcoholism. And the parents were probably pimping her out, this is gonna be a terrible episode. And then you're like, What is this about my diabetes, really something? So how?

Amanda 7:45
I mean, there's other things that that will, you know, I can get into that go into it. But the biggest reason was because of my diabetes.

Scott Benner 7:54
Alright, so, I mean, if you grew up for years and years and years in, in a classic family structure, was there. I mean, if you look back on your life, were there anything? If I how do I want to put this? I don't know if the first 10 years of your life were a TV show what I noticed anything that would make me think, oh, One day this kid is going to be in foster care.

Amanda 8:17
I'm definitely I definitely not a TV show than my first 10 years. I my mom and dad got divorced when I was three, I think, and that was really rough. My dad using drugs a lot. And it was just a really rough time. And he was never super consistent with like seeing me. But from the ages of six to nine, I was abused by my babysitter's husband, oh my God, and no one ever knew. No one ever knew for a long, long time. So that went on for from six to nine. And then we moved because my mom had gotten remarried. And then once we moved, that's whenever I was diagnosed with type one.

Scott Benner 9:10
My assumption and I'm not asking you to give me details, but they weren't hitting you. There was a sexual abuse. Yeah, from six to nine. So we your mom was in a situation where she had to leave you with somebody to go to work. She chose somebody. And

Amanda 9:25
it was actually someone from a church. It was a woman from church. And then it was her husband.

Scott Benner 9:34
Wow. Well, you know, all the people who aren't religious to her that were just right now in their cars, they this is what they did. And I know it. Yep. Yeah. Well, I don't go there right now.

Amanda 9:48
I didn't want to like, throw that in there. But I mean, my mom obviously like thought that they were good people.

Scott Benner 9:54
No, no, no, I understand. I just I don't know in the middle of such a sad story. I imagined everyone Listening just going see redemption. I told you I was doing the right thing. These church people. Anyway, not to say that, of course everyone who goes to church would do something terrible. I just I don't know, it made me laugh for a second. I don't know what's wrong with me. That in the middle of that I was like, redemption for the people who don't believe right here. No,

Amanda 10:20
I knew that was coming. Yeah, sorry.

Scott Benner 10:22
I don't know. One day I'll talk to a therapist. Probably do it on the podcast. Honestly, I need content. So

Amanda 10:28
anyway, interesting.

Scott Benner 10:31
Okay, so Well, that's terrible. But so your mom moved away? Having never known this happened to you?

Amanda 10:38
Yeah, no one ever knew until I might have been like, 14. I think whenever I finally told someone, I was in a group home, whenever I ended up telling someone, finally,

Scott Benner 10:50
something. First of all, three years is a long time. And it sounds like this person was babysitting you for your mom's job. So did you have a lot of proximity to this person? That wasn't just like a couple of times a year thing? I guess is what I'm asking.

Amanda 11:03
Yeah. My mom worked two or three jobs throughout my childhood. And so I was there like, overnight, we would go on like trips out of state trips to like their family for holidays. Yeah, I was there all the time.

Scott Benner 11:23
Can you tell me a little bit about what it's like to have this? These experiences? not tell anybody? First of all, why do you not tell anybody? Is there threats? Or?

Amanda 11:36
Yeah, I think. I don't know if it like just became normal for me. Like, it was just like, oh, this is just what's supposed to happen. And I've blocked a lot of it out. Honestly, I don't remember a lot of it. But yeah, I think it just became like a normal. And I mean, he did say like, oh, this is just between like us. And it started out as just like, minor things. And then it escalated. So it wasn't like this huge thing from the very beginning. Yeah, no, I

Scott Benner 12:08
understand. So So when this is happening, there's a lot of Imagine there's a lot of blocking it out. But how does it come to the surface? Like? It's not my first question. My first question is, do you have any context looking back about how it impacted you, I'm assuming it was poorly. But there are ways that you can point to things about your personality or how you saw life or anything like that.

Amanda 12:33
I mean, it definitely did not set me up for, like, good teenage years. I was very rebellious and very, like, would sleep around at a very young age. And I think part of that, too, is like my dad not really being involved in my life that much. Probably contributed to that. But yeah, it definitely having like my own daughter now, makes me extra cautious. And like, Look at everyone. Yeah, that's like, a red flag popping up whenever there's not

Scott Benner 13:13
gonna match. Well, I would imagine that makes sense. So okay, so you were kind of hypersexual at a young age. And was that prior? I mean, when does that start for you? At what age do you start doing this on your own?

Amanda 13:32
I started having sex at 1313. And I was still kind of in and out of group homes at that time. I didn't officially like get out of group homes until I was like right before I turned 16 I think and so it was kind of like a little bit there. And then once I got out of group homes, I was home all the time. It was it was pretty bad.

Scott Benner 13:59
When does your birth mother become? Oh god you were in the home when you told somebody the first time you said about the abuse so your your birth Mom's not in your life?

Amanda 14:12
No, she is She She is my mom's always been super involved in trying to do the best that she could with what she knew at the time and

Scott Benner 14:25
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Amanda 17:12
Yeah, she would always visit me and bring me stuff whenever I was living in group homes. Alright,

Scott Benner 17:17
so let's find out how all that fits together. So you're diagnosed when you're 10? Do you remember your symptoms were the day it happened?

Amanda 17:25
Yeah, I definitely remember. Like I said, I had like a stomach virus. And it just seemed like it never went away. I lost a bunch of weight. I would go to the bathroom all the time, I would drink so much water, I would like wake up in the middle of the night and just be surrounded by like 20 water bottles. Because I was drinking so much. And I would get like these random bouts of like shakiness. And my mom would always be like, Oh, just go eat like, you have any in a while. And I would eat and I would feel better. And the day I was diagnosed, I don't really remember. I just know that my mom knew that, like one of her friends was working in took me in just to have them look me over.

Scott Benner 18:05
Do you recall if you were in DK or not? Oh, yeah, I was. Okay, so the diagnosis happens. And then what is Do you remember your reaction to the diagnosis?

Amanda 18:20
I think at first I didn't really understand what it actually meant. Because I was in the hospital. And my friends got to come and see me and they would bring like board games and we would play and my, I think it was my grandma bought like sugar free jelly beans. I just didn't wish her disgusting. I just didn't know like what it meant. And then once I came home, it sank in more because everyone around me had that mentality of like, Oh, are you allowed to eat this now? Okay, so I think that's when it kind of started like my negative outlook on diabetes.

Scott Benner 19:03
Right away people were about what are you allowed to have? What are you not allowed to have? And it probably was constant

Amanda 19:09
constantly, people would ask me that. Are you allowed to have that? Are you allowed to eat this? Can you eat that?

Scott Benner 19:15
Did you have any, any eating disorders as a child?

Amanda 19:22
No, I wouldn't say so. I mean, whenever I started living in like foster care, and group homes and stuff, I definitely would hide food. Like in my room and stuff, but that was more because again, like Are you allowed to eat this and they would restrict food sometimes. And so I just kind of felt like I had to have it.

Scott Benner 19:43
So can I get a little background about your saying the diabetes caused your separation from your mom, but how does that happen?

Amanda 19:51
So I think it was around whenever I was 12 I've had diabetes for about a year and a half or so we had moved again. And I just kind of stopped taking care of my diabetes, I would lie to my mom and tell her I took my insulin or checked my blood sugar. And I would end up in DKA, multiple times. And I don't remember how it exactly came about, but the state got involved because I was in the hospital over and over again for the same thing. And they had taken custody of me and pretty much said that if my mom couldn't take care of me, then I'd have to go into a foster home. Like, straightened

Scott Benner 20:42
out where they also wouldn't take care of you. I imagined but excuse me, I'm sorry, I have bronchitis. I got I got um, I forget what they called it. But apparently you get COVID. And now you get bronchitis afterwards. Again, like a bonus. So Oh, yeah. Like the diarrhea with the teeth. So if I if I talk too quickly, or laugh, I'm gonna cough. I apologize. You're fine. Thanks. So. Okay, so you're just stopped taking care of yourself? About a year and a half into your diabetes? Do you have context for why you did that?

Amanda 21:22
Not exactly.

Scott Benner 21:24
I wouldn't imagine you would, but I just have to

Amanda 21:26
ask. I wish. Yeah. No, I mean, I wish I understood it more. Myself. But no, not really, I think a lot of it was because of the abuse that I had went through that, like, stopped suddenly. And then like, you know, no one knew about it, but me. You know, having to like move to a new school and having this new diagnosis and my dad not being involved. I just, it was just a lot of things.

Scott Benner 21:53
Do you ever remember feeling at all suicidal or anything?

Amanda 21:58
Yeah, I had actually, a few times throughout, like, those years had went to like a psychiatric facility because I had attempted suicide. And whenever I was in the group home at one point, like I refuse to take my insulin, and so they put me in there.

Scott Benner 22:17
And that was after diabetes. Yeah. Okay. So interesting. You said something a minute ago, you said the abuse stopped abruptly? I'm assuming because you moved. And, and that was a weird thing for you. So do you think that oh, God, I hate even asking this question. No matter. But do you think the abuse felt like attention? On some level?

Amanda 22:42
Like, did it? Oh, for sure. Oh, for sure.

Scott Benner 22:46
So when it goes away, you've been I mean, this, this horrible person has indoctrinated you already. So it now feels normal. Like, I really don't want to ask you this. But as a nine year old, when you know you're going to the babysitter in your head. Are you like, Oh, here's what will probably happen today. And like if I was like when I used to go to my grandmother's, and I knew she had an Atari and I was like, oh my god, we're gonna play Space Invaders. Like, and when did you have that feeling? Like, this is how today's going to go? It was like, I don't know. Like, I'm looking forward to it. You understand? But I mean, I'm trying to

Amanda 23:18
right? Yeah, yeah, no, I think I like did no, like, what was it depended on like the day to because sometimes, like, we would go to church, and so like, we wouldn't be at the house. So it would really just depend. But yeah, I think I did come to expect it.

Scott Benner 23:34
I see. And then all of a sudden, it's taken from you. And there's interactions and people that are now gone from your life, you move into a new place. You get diabetes, and then about a year and a half into it. It just sounds like you just couldn't take it anymore.

Amanda 23:50
Yeah, I think it just became too much. Like, I don't know, like subconsciously, I guess to handle. And it was just like coming out in a way that, you know, wasn't healthy like me not taking care of my diabetes.

Scott Benner 24:04
Yeah. So once you don't take care of it, you're not giving yourself insulin, and they send you to an institution because they think you're trying to hurt yourself. Do you then realize, like, I mean, because it doesn't sound like you were purposefully like, I'm gonna stop taking insulin because this will kill me. I don't think you were. Is that right? Am I getting that right?

Amanda 24:24
Yeah, no, I didn't. I mean, I think in the back of my mind, I knew like, I could die from it. But it wasn't my intention. Right.

Scott Benner 24:32
That's what I mean. So once it's pointed out to you that this is a tool that you could hurt yourself with. Does it become more purposeful or is it still just this? I don't care?

Amanda 24:44
Um yeah, I mean, it definitely became more purposeful like in the fact of if I didn't want to go to school like I knew that if I didn't take my insulin and I was sick, like I didn't have to go and do cuz like, I didn't use it in a way to like control anyone, but I definitely knew like how to, like, you know, use it to get what I wanted,

Scott Benner 25:12
when, when you're in that setting, and this is really what I want to start hearing about, but I'm trying to find out what it was like to be in a group home or to be in foster care. I mean, start with like a high level overview of if I said to you, hey, you were in a group home? What's that? Like? What was it like?

Amanda 25:35
The group homes were definitely harder than being in foster care, because it's definitely like a institution, like you were saying, but you're just there with usually like, if you're a girl with girls, if you're a boy or with boys. And you have depending on which one you go to, you have your own room, or you share a room with a bunch of other people. And there's just a bunch of rules that you have to follow. And there's usually like, therapy that you go to all the ones that I went to, they had like schools on site. So you still went to school like Monday through Friday? Then man, yeah, you just like eat meals with everyone like in your home? And there was staff that would like overlook you? And was it like, help help you with things

Scott Benner 26:26
set up like a barracks? Or did you have a room?

Amanda 26:29
So I was in a couple of different ones. Two of them that I was in, you had your own, like Personal Room. And then like you couldn't close the door or anything, but you had your own personal room. And then the last one that I was in, it was like an open floor plan where we like all slept in bunks in the same room.

Scott Benner 26:50
Okay, are you when you're there? How many people are you with?

Amanda 27:01
There was 20 of us in the first two that I was in. And then in the last one, I think there was only like, 12 of us to a cottage.

Scott Benner 27:12
Okay, but it's mixed, right? Like the the main site, there are boys and girls.

Amanda 27:17
The first two I was that there were mixed in. And the last one I went to it, it was only girls.

Scott Benner 27:24
Do you when you're there? Do you look at the other people and think up losers? I don't belong here. Do you look at them and think Jesus is exactly where I belong? Like, like, how was the feeling of being there?

Amanda 27:40
Yeah, no, it definitely kind of felt like, what did I get myself into? The first two an hour, I keep saying the first two because they were part of like a children's division. And the last one that I was a part of was the youth division. So that kind of makes a difference on like, why people are there. But yeah, the first two, it wasn't that bad. Because I mean, people were there for just like behavioral issues, just you know, like, not listening or not going to school or whatever. So that one wasn't bad. But the last one I went to was really rough. Because there were people in there for like manslaughter. And there were people in there for, like molesting other people. And that was pretty difficult

Scott Benner 28:30
to get around. So suddenly, you're suddenly you're I don't know how old but not that old. You've been a victim of sexual abuse. You got type one diabetes, you rebelled against it to the point where the state told your mom, hey, if you can't handle this, then she comes with us. And now you're sitting across from, from Jamie and Jeanne shank somebody. Exactly, yeah. Okay, well, that'll make you rethink everything. And I would imagine, I want to go backwards for a second and ask you a question. It's gonna be hard for you to answer. But why couldn't your mom get a handle on this?

Amanda 29:10
I think she tried. But she pretty quickly was like, you're going to do what you're going to do. And I rebelled against her pretty hard. And we've never been like, we're not like super close or anything. And so it was never like, I could just go to her and talk about anything. So yeah, I mean, she tried her best, but I was pretty difficult about it.

Scott Benner 29:39
What does that mean? She tried her best because I'm also trying to contextualize in my mind her situation, which is she was married to somebody who was a drug addict who left her with a baby. I mean, you have brothers and sisters or no.

Amanda 29:52
I have a older half sister. We're 11 years apart.

Scott Benner 29:55
Fair enough, though. She's got two kids. She She's abandoned. She's been through her own A taxing situation? I mean, I think

Amanda 30:02
yeah, I think that that, yeah, I think at that point like, like she did go through a lot of rough things in her life, like growing up for her was not easy. Her father was very abusive towards her. And so I don't want to say like she gave up, but I think she was kind of like, well, it is what it is, like, I've done what I can do. Or like, I she would just ask me a lot of times like, oh, did you take your insulin? And I would tell her? Yes. And she would just take it for what it was.

Scott Benner 30:39
Your scenario? I mean, this whole big scenario, is it geographically systemic? Like, do you really mean like, is it? I don't know. Like, I don't know where you live? And I'm not asking you to tell me. But is the my husband's an addict? We kicked him out. People abused us. Is this a story that, like, if I told you I've known a lot of people in my life, I don't know anybody who this has happened to, like, is this a thing that just happens? And therefore it's more palatable?

Amanda 31:11
I mean, yeah, I guess it could be like systemic. I guess. So. I mean, my mom also, like, had a lot of depression issues back then. And so, I mean, I really don't know, like, what went through like her mind at the time, Besides, my daughter is going to kill herself. And I'm gonna watch it happen.

Scott Benner 31:37
So hopefully, these people will come and help and we'll let the system take over. And I mean, yeah, listen, I don't want to jump to the end. But that was not valuable to you. I imagine being in this system. Yeah. So were you ever in single, like, foster care homes?

Amanda 31:58
Yes, that's where I started out. You start?

Scott Benner 32:00
Oh, because you were young and cute. And that was all like, the are those people looking to make families with foster children? Are they doing it for money? Do you think?

Amanda 32:09
No, the one I went to like, they were strictly just doing it like, like foster care, they had already adopted, I think, four or five kids. And they were older, some of them still lived in the house. And some of them were like, old enough to be on their own. So they were literally just doing it for, like, whatever reason for their own personal reasons. But the one I went to she had just became like a medically licensed foster care home. And I was her first type one diabetic. And then while I was there, another girl came, and I believe she was also type one diabetic.

Scott Benner 32:50
So she gets herself a medical distinction so that she can bring kids in that have other issues proving she can handle them. Sounds well intended. Although I imagine there's probably a little bump and pay for that. But that's I'm not going to put that on her. Was she helpful? Or did you just rebel against her?

Amanda 33:09
No, I mean, she was, she was nice. Again, like she just did the best that she could with like the information that she had. It was really the other kids in the home that were kind of rough to be around. It was always like, you don't live here. I do. Like you're a guest. I never felt like I was fully at home like that's who it was like nine months or so.

Scott Benner 33:39
That's a long time to not feel welcome. Did anyone bring up church? And if they did realize, oh, no, no, I'm not doing that again.

Amanda 33:45
Oh, yeah. No, it was a requirement for us to go to church every Sunday there.

Scott Benner 33:49
Gotcha. When do you tell somebody hey, listen, from six to nine. I was abused by my babysitter's husband.

Amanda 33:57
I think I was 14. So I was 13 when I went to the foster home. And then I had gotten out of the foster home for a little bit because they thought like, oh, I can go back home and like, it'll be fine. And it wasn't fine. I had gotten into a lot of trouble at school and gotten kicked out. And then I got arrested and put in juvie. And then I went to my first group home.

Scott Benner 34:30
I because you're part of my group, I know what you look like. And he's just such a pleasant person. That when you say, when you say things, like when I got arrested and things like that, I'm like really? This girl, okay?

Amanda 34:44
It's It's shocking. Wow.

Scott Benner 34:47
You don't look like somebody who's gonna. Who's gonna stick me sell me meth and throw me in front of a train. You know what I mean? No, just don't. So tell me tell me a couple of things. Got in trouble? How do you get in trouble?

Amanda 35:03
So, I was a freshman in high school, I was 14. And I had started hanging out with people, which is like, not their fault, like this is all on me. But I had started like smoking weed and drinking a lot. And I had taken the hochkar and a water bottle to school and got drunk. And the next day I got called into the principal's office, and I got like, expelled from school. And

Scott Benner 35:36
for the vodka. Yeah, I'm sorry. This is not an appropriate question. But how'd you get hot?

Amanda 35:44
I'm pretty sure someone like told on me.

Scott Benner 35:45
Who would you tell Amanda?

Amanda 35:48
Well, I was trying to like be cool. And I was like, sharing it with people. And that was my first mistake. Yeah, I know. Well, I guess my first mistake was bringing it to school in the first place to tell you

Scott Benner 35:59
I'm stopping myself every five minutes from asking you what part of the Midwest you're from, but am I close? Okay, other people bring it back in Jersey, too. So I'm just saying. Your story. Your story plays like a Hulu television show. It really does. Like, like, did you watch shameless and think? Are you people stealing from me? Like, I'd be like, who was in my house writing this down? Oh, my God. Okay, so you get booted out of school is the weed and the cigs and all of that just to be like, popular? Where we're, you?

Amanda 36:38
Know, I mean, I, I liked it. You know, it wasn't. It wasn't like, I was just doing it just because it was just a way for me to get out of the house and like, forget everything and

Scott Benner 36:49
wait, because the doubt your downtime when you're in those homes is sitting around, right? Yeah, yeah. Yeah. And then there's all these they give you like a tivities. But it's not like, yeah, not activities that I would imagine fill the the, the minds of people who have proclivities like you're finding they're like, these people are not like, oh, yeah, monopoly, they're like, we should go kill something. Or have sex with something or smoke something NOT. NOT see who gets Park Place? I'm imagining. Okay, so there's just a lot of time. You're around people. And let's be fair, you're one of them. Right? Like, yeah, there's somebody telling their story right now. It's like, oh, man, I was with this girl who wouldn't take her insulin? It like it like, yeah, so, but it doesn't feel like that. Right? Like, you feel like you don't belong there while it's happening.

Amanda 37:45
What do ya mean? I definitely like, wish it would have been different.

Scott Benner 37:49
Yeah, no kidding. Well, I'm Yeah, obviously. I'm sorry. Okay, so it comes out? Does it come out in therapy? Do you tell somebody you're just like, you know?

Amanda 37:59
Yeah. So eventually, I make my way into one of the group homes, I think it was the second one I was in. And we would be like in a bunch of group therapies with all the other residents. And people would, you know, talk about the things that they went through, and it would be the same thing, and I kind of realized, like, Oh, that wasn't normal. And I had like a staff member that I really trusted. And I ended up telling her,

Scott Benner 38:29
just anything happened to the babysitter's husband.

Amanda 38:35
Not that I know of I kind of purposely like didn't want to know. I looked them up on Facebook at one point. And he had died. And so I don't know like exactly when he had passed away, but he had died. And so I don't even know like if he was alive whenever

Scott Benner 38:59
everything happened. I'm glad he's dead. And however long he lived was too long. So yeah, did it give you any comfort to know he was dead?

Amanda 39:08
Yeah, kind of I mean, part of me, like later on wished I would have told someone sooner because who knows? Like, if that happened to someone else, but yeah, like knowing that if it was over, like felt good.

Scott Benner 39:28
Well, did it send you into therapy? They hear this and they go, Oh, Amanda needs therapy. Now we've we've learned this about her. Did they tell your parents your mom?

Amanda 39:39
Yeah, so my mom, they actually like at the group home, we had to have a meeting and they brought my mom in. And they told her that was pretty traumatic. Yeah. I mean, ya know, they ended up telling me

Scott Benner 39:54
I know you're not that close with her but has she ever brought it up to you she apart? I mean, not There's an apology to be made. But did she ever say I apologize? I know I put you there, or do you get anything like that?

Amanda 40:07
Maybe in the beginning, like when we like when we first told her but now we like Do not ever talk about it.

Scott Benner 40:16
Yeah. Trying to decide at what age do you think your wife mean? Because you're you're married now you have a baby. And you would describe this these things as being in your past? Yes. When does that happen? And how does that happen? Where do you? How do you make that transition? What What starts you in that direction? Like you taking care of your blood sugar? Like, I'm not talking to you right now with like, a 15? A one C, right?

Amanda 40:46
Oh, no, no, it was like five, five.

Scott Benner 40:48
So when does it start? Like, what's the thing that gets you moving? Is it your health first? What is it so I,

Amanda 40:56
I was like, 17, I had gotten my GED dropped out of school, I was still kind of just like, you know, doing whatever, wasn't taking, like the best care of myself. But I moved out of my mom's house and moved in with my best friend. And I think like reality just kind of hit me. It was like, Oh, if I don't take care of myself, like, I can't work, I can't pay bills. It was within like, the first few months of moving in with my best friend is when I met my husband. And I remember I had like, not taking my insulin, and I was going into DKA. And he came over to like, hang out and I was on the couch just dying. And he was like, are you okay? Like you do not look good. And he was just like, you know, so concerned. And I mean, I hate to say like, he gave me something to live for. That's so cheesy. But he definitely, like, made me realize like, oh, like there could be more to live for, like, it doesn't have to always be like this, you know, I can straighten up and like have a life.

Scott Benner 42:07
So a person that was concerned for you? And was there was enough for you to feel like oh, I should probably help myself.

Amanda 42:20
Yeah, I think like it was a mixture of that. And like just realizing, Oh, I cannot live on my own. If I don't like take care of myself and get a job and I can't have a job if I'm constantly like throwing up and feeling like crap.

Scott Benner 42:33
How old are you with that? When you meet him? 17 you're living with a friend at that point? Yeah, something over the park 20th floor. I'm just kidding. Amanda. Oh, gosh. Oh, gosh, no. View view of the lake. Anything. I'm trying to imagine where 17 year old our friend end up living? Not good.

Amanda 42:59
Oh, it wasn't like any Yeah, no, it was not anything special. It was very shady. And and it did take a few years. Like you know, it's like I started taking care of my blood sugar but I still was partying and you know, doing all the things for a few more years until I like chilled out

Scott Benner 43:15
helped me there Amanda partying and all the things we alcohol other drugs.

Amanda 43:22
Yeah, I mean, like it was mainly weed and alcohol and you know, you take like, a pill here. Take a snort it is here. It wasn't ever

Scott Benner 43:35
get. You're getting demure on me. Coke. Adderall? No, no. Yeah, yeah.

Amanda 43:43
Adderall, Xanax.

Scott Benner 43:47
Okay, so you're doing I mean,

Amanda 43:48
it's, yeah, it's hard for me to like tell because like, sometimes it would just be like, oh, like, take this and it's like, okay. very irresponsible.

Scott Benner 43:57
So you're taking all this stuff? You could take your insulin.

Amanda 44:01
Yeah, it's funny, right?

Scott Benner 44:03
Well, no, but why? Laying on the sofa that day? Feeling that terrible? What stops you from just going maybe I'll just give myself a couple units. Were you doing basil? You must have been doing basil on that covering meals, right?

Amanda 44:17
Yeah, I think I think it just took me a while to get out of like, not taking care of myself, because I had done it for so long. Like I didn't remember how to carb count. Like, I didn't remember how to do like a correction factor. No, none of that. And so I think it just slowly took a while. Because once I kind of like realized, oh, I need to like straighten myself out. My agency was like, probably in the 12 or 13. And it took until I was probably 22 ish to get it down into the sixes sevens. Five. Yeah. Yeah, I mean, it was like a very slow like, I remember going to my endocrinologist and it would be You know, 11.5, and then it would be like 10.5. And then it would be 9.7. Like it was just a very slow decline. So

Scott Benner 45:07
when you were younger, did you not know how to take care of yourself? Or were you not? You knew and you weren't doing it, and then you forgot along the way?

Amanda 45:17
Yeah, I definitely knew how to I just wasn't doing it. It was definitely old school. You know, I was on like syringes. And I'd have to eat like 45 grams of carbs for this meal and 60 for this meal. But I definitely knew like how to do it. I just was choosing not to,

Scott Benner 45:36
and I'm talking to you. You're a bright person. So you weren't overmatched by it? You did not understand it, right? No, no, definitely

Amanda 45:42
not.

Scott Benner 45:43
What's your was your mom overmatched? By it?

Amanda 45:47
No, I mean, she was pretty always like, I don't care what you eat as long as you take insulin for it.

Um, but I do wonder if like her experience in healthcare kind of gave her like a jaded look towards it, because she'd seen so many people come in. Like not taking care of it. So I don't know if she kind of expected it or just was like, like I said earlier, like it is what it is or

Scott Benner 46:17
what about in the foster care system? Was your care being monitored by anybody there ever were you ever like suddenly have like a seven a onesie? Because somebody was paying attention? Or did

Amanda 46:31
I don't know if it ever got that low, but it definitely like my control was better. But the foster mom, like she was the one that like, oversaw everything. And you would have to like, come down, and she would have to want to give the injections and she would keep like the insulin locked away. I think at that point, I was on pins. So yeah, she definitely watched everything. I did end up having a seizure at her house from a low blood sugar. But that was the only thing that ever really happened.

Scott Benner 47:06
Was that a loving situation in any way? Or was she just an overseer?

Amanda 47:12
Yeah, she was nice, you know, and she she was pretty understanding. But she had also, you know, already seen a bunch of like, foster kids and stuff like that. So she didn't take any crap, for sure. She kind of knew, like, if you were being fake, or

Scott Benner 47:31
Yeah. So you said earlier that all this came from your diabetes, but I'm gonna wander while we're talking. And I'm gonna wonder after we're done talking, how much of this isn't really the abuse? And then the unluckiness of running into the diabetes? Like if this wouldn't have just been something else? 1011 13 years old, you know what I mean? Like, like, if you didn't just need any tiny little tip to just run in that direction. I'm going to do something unfair. You don't have to answer me if you don't want to your dad, your mom and your abuser. Whose fault is this? What happened to you? And you I'm gonna put you I'm putting you in there too. Right? Who do you see is that fault?

Amanda 48:20
It's kind of I don't want to say like, it's like, completely on anyone. I mean, I guess if, if I had to choose one, it would be like the abuser. But cascades though, right? Yeah. But I mean, like, my I mean, second runner up is my dad.

Scott Benner 48:36
Well, yeah, we'll see your father doesn't do his job. Right. He doesn't do the thing. He promised He doesn't do the thing he needs to do. Put your mom in a bad position. Your mom is having her own crisis. Her life is falling apart was your mom using too or just your dad? Just my dad, your mom's life's falling apart. She stuck putting you in care. She does. The best she can. I mean, she goes to a church to find somebody to put you in with boom. Now you're being I mean, we're not saying it out loud. But you're being raped for three years by by an adult. You know, then you get out of that situation. And before you can even come up for air. You have diabetes. Yeah, yeah. Yeah, I don't think you had much of a chance Amanda. Like you would have to be. I don't even know what's that you're like, I don't know what you needed. Like, you don't I mean, like in that scenario, I'm trying to think of what could have been added to your life to stop any of this. And it's sad but I don't see. I don't see like a simple answer. You know.

Amanda 49:41
Yeah, I was just dealt an unlucky hand.

Scott Benner 49:44
You needed some adult to do the right thing. You that's what you need. You need an adult to look at and go there's a kid, they need stuff. I will be the person to facilitate that stuff for them. Show them comfort and calm you know, care and, and and make the decision For them, the children are not able to make it people just let you down the whole way. And then you get into a system that lets you down. I mean, I mean, with the exception of a foster care mom who did what you explained, you're not, you're never in a good scenario, were you abused inside the system at all?

Amanda 50:17
No, no. Not that it doesn't happen. It does definitely happen. But no,

Scott Benner 50:24
when you start becoming sexually active inside of the system is with is it with other children inside of the system?

Amanda 50:33
Um, it was never like in the system, definitely, like in foster care I was. But otherwise, like, it would just be whenever I would get out on they call them furloughs and it was just like weekends or, you know, four or five days at a time that you could go home.

Scott Benner 50:53
So is like, I don't know is 14 year old Amanda getting a day off and thinking I'm gonna go find some cigarettes is a voc and have sex

Amanda 51:02
is definitely not I think, whenever I ended up losing my virginity. I was like on like one of those furloughs at home. And it was I want to say I was about to turn 14, if I remember correctly, and it was like two weeks away or so. And it was by an 18 year old and he had kind of already groomed me from a younger age. And so I kind of already like I didn't have like an issue with it, but I kind of knew it was going to happen.

Scott Benner 51:39
Okay, you expected it to come. I I'm so sorry. I'm going to ask you something that I feel bad about asking but lost your virginity. Are you saying that as that was the first time you had intercourse or the first time you did it willingly? Like willingly? Okay. That's what I thought I just wanted to be sure. I gotta tell you, Amanda, like 10 years ago, I thought, I'm going to start a podcast about diabetes. And now, I'd like I mean, the situation like, I don't know if I'm doing a good job at this or not. But am I okay, so far? Are you alright? Yeah,

Amanda 52:13
no, you're doing great.

Scott Benner 52:15
I don't know. I'm shopping. I feel like I'm being abused. But I'm just like, I don't know what I everything, I think to say I'm like, I think that's what people would want to know.

Amanda 52:26
And it's been so long for me that it's definitely not well, you're

Scott Benner 52:29
so chill about it. You're freaking me out to be perfectly honest. Like did you go to? Or are you high right now? I used to calm?

Amanda 52:37
No, no, I definitely like had some therapy. Probably not as much as I should have. But I did have some. But I mean, it was so long ago for me. And like I said, I blocked so much of it out that I'm just in this spot. Like I can't. I can't and I don't let it get to me like I just have too much other stuff. Well, I have a full time job. I have a husband, I have a child like it's just it is what it is like it happened and it like really, really really sucks. But like, I mean, it's done.

Scott Benner 53:12
Right? So yeah, well, I'm gonna get I want to move forward with you. For sure in the in the story. But I want to make sure I understand that transition again. So you you meet by the way, is there any chance that your husband is a handsome car thief? Oh, God, no, no, I would have been great. And if people don't watch shamelessly, they'll know what I'm talking about. But anyway, so Oh, God, no, Which part did you say? Oh, God, do you know he's gonna hear this? Was it the car thief part of the handsome part that you're like, oh, no, no, no.

Amanda 53:47
The car fee.

Scott Benner 53:48
That's what I thought. All right, I'm sticking up for him a little bit. So he comes into your life. He gives you some stability, something to shoot for you. Basically after reteach yourself diabetes as an adult, you don't have any children. Money. I'm imagining. So are you still? What are you using to manage at 17 years old, which is now 10 years ago? 2012.

Amanda 54:09
Like, device was yes. I was still doing pins and just finger picking.

Scott Benner 54:16
Okay. And so how do you get better at it? I mean, I'm assuming first step is deciding to get better at it, right?

Amanda 54:23
Yeah, I think I started like taking a sample and to set the time I was taking my Lantis every night. And obviously that helped tremendously. Just having like the basil. And then yeah, I just started like taking, trying to take insulin as I was eating. It wasn't until I was 20 or so that I found out what a Pre-Bolus was. And that's whenever I really got my agency down. It was like low seven sixes when I started doing Pre-Bolus thing,

Scott Benner 54:58
that's seven years ago, you figured that part Oh, yeah, do you have a CGM at this point?

Amanda 55:04
No, I didn't get. I didn't get a pump until I was 22. And then I didn't start wearing a CGM until maybe three years ago.

Scott Benner 55:19
Oh, wow. Okay, so you haven't had? Are you automating now? Or are you still making decisions? Like,

Amanda 55:24
oh, no, I mean, I'm on the T slim with the control IQ. So

Scott Benner 55:29
very cool. And g six. You've come a long way. Does the boyfriend back then learn about diabetes with you? Or do you keep it to yourself?

Amanda 55:44
I pretty much kept it to myself. I mean, he kind of saw in the background what I was doing. And he would ask me sometimes, like, Oh, are you low? Like, do I need to get you something? Or, you know, he'll he'd asked me like, do you need this to eat? Or he kind of saw in the background what was going on? But I never really, like taught him.

Scott Benner 56:07
Okay. He was just kind of picking up by being around you.

Amanda 56:10
Yeah, like if I needed later on, like, when I got like, my pump supplies and stuff, like if I needed to change it, like he would know what to grab to change it.

Scott Benner 56:18
I mean, how do you decide using your husband? Back, but then your boyfriend? How do you decide? This guy isn't using me? Like, how do you make that leap after the 18 year old, groom's a 14 year old you after you're abused as a child, as you've gone through a system where I mean, it has to occur to you while you're a kid, like there are people just watching me for the dollars, right? Like just to get paid? Like, how do you? How do you make that leap to? This is a real person who cares about me and I can believe that

Amanda 56:53
definitely took a couple of years. We were just like, kind of friends for the first year or so that we knew each other? Yeah, I think it was just like the way that he acted towards me, you know, like, you'd just randomly bring me a soda. Or he would, you know, ask if I wanted to go to the movies, or we would just like ride around in his car and just talk. There was never anything like attached

Scott Benner 57:21
to it. You didn't ask for anything? Yeah, you ever felt like the time you spent with them? You had to pay for somehow?

Amanda 57:29
Yeah, it was always just very easygoing and free.

Scott Benner 57:34
Okay. When do you tell him? I mean, I mean, obviously, first of all, you're not at Juilliard sitting around in the hall playing piano, but so I'm assuming he was doing some of the pills and stuff that we're talking about as well. Yeah, yeah. So, but when do you tell him? I've been abused?

Amanda 57:57
For a long time, yeah. Yeah, it was a long, long time. So like, I think we were already married. Okay. All right. Yeah, no, I mean, that was like, that was really hard.

Scott Benner 58:08
Yeah, sure. Did you feel like if I tell him that he'll leave me?

Amanda 58:15
No, I kind of felt like not necessarily leave me. But like, when he looked at me differently.

Scott Benner 58:23
Do you tell? Like, as a matter of course, now, your close friends all know this about you?

Amanda 58:30
No, not really. I told like one part, like my best friend, the one that I lived with. And then actually, like some of my co workers, because I was talking to them about coming onto the podcast, really? And yeah, yeah. So we kind of talked about it a little

Scott Benner 58:50
bit, when? Why not? When? Why did you want to do this?

Amanda 59:00
I mean, I just, I just think it's kind of important for people to understand that, you know, when a young kid or teenager is not taking care of their diabetes, you know, there's, there's something else it's not just, Oh, I'm just not going to do this one day, like, there's something else going on. And definitely, like being in the group homes. I just feel like there should be more awareness towards that and how difficult that can be. And I just never really heard anyone talk about it before.

Scott Benner 59:33
Yeah, I'm, I have to be honest. I don't know how long ago was now it's probably three or four years ago, where someone said to me, can you have someone on the show who drinks a lot and has type one? And I was like, I mean, I guess so. You know, so do you think people are like, Could this guy put some effort into this pocket? There's a lot of effort that goes into it. I just I don't always think I was like, alright, they want to hear from a person who was like a Real, like, not just a casual drinker, right, but somebody who was drinking a lot, and frequently, and you know, I think what people wanted to hear was there must be a way to manage it. And then you get the person on there, like, tell you what they do. But it's like hard and fast rules. You know what I mean? It's, it's more like, this is how I got through it. And then I record the show. And I think, well, this is like, my show has a clean rating, which means I don't curse, right. And if I curse, it gets bleeped out. And as odd as that is, to me, I have a fairly heavy following of people who my wife and I were talking about the other day, I'm like, you don't even religious, like, really religious minded people listen to the podcast. And she's like, it's a lot, right. And I was like it is. And so I think I need to tell them, I can't believe this is how it occurred to me. But I'm like, I think I need to tell them, there's going to be a lot of talk about stuff they don't usually hear on the podcast. And I ended up calling that episode after dark, just for that reason, not because I think if you're a drinker, it's something that should be hidden. I just thought, well, these are things that don't get talked about a lot. I need to mark this episode, so people can skip it if they want to. It's really how it started. And then somebody said, Well, can you get somebody that smokes a lot of weed? And then it just kept building from there. And the first time that somebody emailed me to say, like, I have bipolar disorder, and I want to talk about it, or, I mean, you're not even the first person that was raped by your babysitter, Amanda? Yeah, I'm stunned by that. You don't need me like, I didn't think I was gonna have conversations like this. And every time I get done recording, I think how grateful I am that somebody like you, has the balls and somehow the mental fortitude to tell a story like this, and the desire to share it with somebody else. I feel like glad somebody else is going to hear this. But what allows you to do it is last on me. The I, if I had your story, and I heard someone say, I'm looking for more people to tell stories like this, I think, well, I have that story. But I'm not doing that. And I I don't know, I just it's a very kind thing you're doing today.

Amanda 1:02:18
Thank you. I'd actually like wanted to reach out for a long time about it. And then that night, I saw your post on the Facebook group. And I was like, Oh, well, here's my chance.

Scott Benner 1:02:30
How does that feel? By the way? When the when the the sign goes up that basically says, Do you have a really tough life? Could you come on a podcast? Like and you go up life? Yes, that's me. I'm here. Like, is that a? Is that a? Is that a bad feeling? Or is it? Did you feel like, well, I can help somebody?

Amanda 1:02:50
Yeah, I think it's more of it. I can help somebody. And I'm just at like, such a good part in my life right now that all of that stuff. Doesn't matter anymore. Like, like you said, like you would never know, like, I was telling the people at work about this. And they're like, Are you lying right now? Like, there's no way that this happened to you? And I was like, no, like, really? This all happened? I'm just really good at not showing it.

Scott Benner 1:03:14
Like, do you feel steady as we're doing this? Or are you gonna go like smoke your baby when this is over? Something like that? Like, are you like, are you okay? Like, roll up anything that looks dry? Are you Are you okay? Right.

Amanda 1:03:26
Oh, I'm good. I'm good. That's fascinating,

Scott Benner 1:03:28
Amanda. It really is. It's very cool. But it's fascinating, that you're not wavering. I mean, I've talked to people in all I mean, if there's a spectrum of, of confidence and togetherness, I've spoken to people who I mean, you you've heard a lot of that after darks. Right? Oh, yeah, there are people while I'm talking to them that you're thinking like this person is not okay. You've ever had that feeling? Like you've right? You don't feel like that at all?

Amanda 1:04:01
No, not not at this point in my life. I don't. I mean, like I said before, like it really just, it happened and I can recognize that it happened, but I've just got so much other stuff in my life now that it just it doesn't matter.

Scott Benner 1:04:16
Are you an anxious person? Do you have depression? Anything that I'm missing? Oh, no, I

Amanda 1:04:21
definitely have a lot of anxiety and having a baby definitely heightened that. I don't. I mean, I don't say I have like depression. I have my days but definitely a lot of anxiety.

Scott Benner 1:04:35
Listen, everyone has. I gotta be honest, the I was sitting in the urgent care yesterday, Amanda, and I was like, This is ridiculous. I felt so spoiled yesterday. Like seriously, like I had access to good health care. And I still was like, this is ruining my day. I actually sat there thinking like what a waste. I don't get that many Sundays off. And I'm sitting here at this freakin urgent care. I already know what's wrong with me. I like it when the doctor came and I was like, just give me a steroid packet of antibiotics. I know we trust me, you know, then an x ray and a blood test and 73 things later, she comes back and she goes, you know, we're gonna give you a steroid pack and some antibiotics. And I was like, oh, fascinating. She was how did you know that? I was like, I don't know. I've got a cough that won't go away. I've been alive for 50 years. Like, I clearly have something viral, you know? Or, excuse me, like, there's germs out there. You gotta kill my germs, like get them in there. But anyway, like, my point is that I guess that it just, it felt like a burden. Like, I mean, I wasn't like, don't get me wrong. I wasn't huddled in the corner. But I still was pissed. Like, somebody had taken these couple of hours for me. And I was pissed about it. And you, you lost gaps of your life? Like, I mean, honestly, the last, how long did you say your blood sugar has been down? You gotta pump it.

Amanda 1:06:03
Yeah, I mean, it's been like 10 or seven to eight ish years that I've had it. Going down, you could make

Scott Benner 1:06:12
an argument that the last seven or eight years are really the only years of your life that have been yours the way you want them so far.

Amanda 1:06:22
You don't I mean, that's very true.

Scott Benner 1:06:23
Yeah. Does everything feel new to you? Like, like, the possibilities feel endless. You don't feel trapped or worried about? I mean, you're okay, right. Yeah, no,

Amanda 1:06:37
I definitely. I mean, it took a long time to, like, get to where I'm at, but no, I feel good. And some things you know, I hear people talk about like, their childhood or like being in high school and I'm, I just can't relate to that. So that's a little difficult sometimes. But other than that, it's, it's good.

Scott Benner 1:06:58
Listen, you're not. If you were telling me right now like Scott, listen, I want someone I get stressed out. I go out back and I kill squirrels. I'd be like, Yeah, I got it. You're like, but you're just like, that's good. had a baby. Everything's fine. Talk. How did the hug? I gotta ask you, though. You tell the husband about your life. He, what's his reaction?

Amanda 1:07:19
Well, he also has had a pretty rough life up until we met. And so he was just kind of like, oh, let's add more crazy to the crazy. Cuz Yeah, he had a pretty rough childhood also

Scott Benner 1:07:33
got so. So you didn't say anything to him that he was like, Oh, gosh. Oh, goodness. Me.

Amanda 1:07:40
Yeah, he was just like, Okay, well, here's my stuff. And we're like, all right.

Scott Benner 1:07:45
I grew up here. So I know what happens. Yeah. Yeah. Really something? Do you? Do you still live where you grew up?

Amanda 1:07:55
I live near it. Yeah.

Scott Benner 1:07:57
Do you ever think about 45 minutes away? Do you ever feel like you want to leave?

Amanda 1:08:03
There's times that I would like to move away not for like those reasons, just for other other things.

Scott Benner 1:08:14
What am I not asking you that? I should be asking you?

I really don't know. I'm off center today. Meaning like these conversations are. I'm always pretty sure I'm doing a bad job while I'm having them. So. Oh, no, I'm just worried that I that I didn't say so. Have I been insensitive at any point so far?

Amanda 1:08:40
No, not at all.

Scott Benner 1:08:43
Oh, good. Excellent. It's a weird thing to pick through. It really is. Yeah. You heard the one where the girl came on, and talked about how her mother was complicit in her father's abuse of her. Have you heard that

Amanda 1:09:04
one? Yes. That was a really rough one. I

Scott Benner 1:09:06
was gonna say, were you able to listen to that?

Amanda 1:09:10
It was yeah, I listened to it. It was pretty rough to listen to you though. Yeah.

Scott Benner 1:09:14
That's terrible. Actually. It still comes up. I want to tell you that I really enjoy making the podcast but I make it a lot. And so it blurs together to me most of the time. But, but her episode just like sticks in my head. Yeah, yeah. All right. Well, listen, you're amazing. I hope somebody tells you that every day where you have a T shirt that says it or it's written on the wall somewhere or do you I would write it right on the refrigerator tomorrow.

Amanda 1:09:45
No, it's okay. I know that.

Scott Benner 1:09:47
I'm okay. Amazing. Right on the frigid air. I've circled it. People tried to rub it off. I'd like that stays there. I need that. Somebody better be telling me every day. What are your goals? You said you baby daughter. That's right. Okay. So everything. I mean, everything I experienced growing up informs how I raised my kids. Right and nothing nearly as bad as what happened to you happened to me. I mean, I my ass kicked a little bit by my dad. But, you know, like, it was actually a moment when you when you were talking about how your mom couldn't get it together and I thought oh, I would have like found my head in a law, I would have been like, oh Bolus, sorry, but not Not that I'm saying that was a good thing. But but but my, my upbringing, we were broke, people weren't particularly kind or around a lot. And I saw how that hurt my mom. And that made me want to be around and want to be kind. And some people have the exact opposite reaction. Some people are around horror, and they just, they give out more horror. And so you're around it. You're you've I mean, you've made it an incredible journey to get out of it. And now this is this opportunity is before you, right? There's a guy that loves you, you love him, you made a baby, there's a lot of love here. Everybody's dealing very well with what happened in the past your health really moving forward? What are your goals? Like for the next 10 years? What are you trying to do?

Amanda 1:11:26
Just be better than what was done with me. I just really want like my kids to know that. I'm always here. And I'm never gonna turn them away for anything and just be like a happier home. And I always wanted to have like the home that, you know, my kids bring their friends too, because it's so nice to be here. And definitely, like love my career and want to be able to stay in that and advance in that as I want to. And yeah, just just be better, I guess.

Scott Benner 1:12:05
You don't I mean, in my mind, my wife talks about that all the time. Even now that our kids are older. I want the house to be somewhere where the kids want to bring their friends. And then when their friends get here, they're comfortable and Arden's in her first. Well, gosh, she's got four more days of her first semester of college. And they're already talking about the girls are already talking about coming home, like her friends. You know, when are we going to get together? What are we going to do, we're all going to go out to dinner, then we'll come to your house, even right before they left for school, all of them they kept coming here. And that's just that's a it's a great goal. And it's very doable. So I'm sure you'll be able to do that. It's exciting, isn't it that you can that you'll be able to break such a terrible circle and just one generation.

Amanda 1:13:00
Yeah, that's that's all I want is to just show better and do better.

Scott Benner 1:13:09
Why is that? What you want? Why aren't you? Why aren't you? Hi, we're running away. We're abusing people. Like why aren't you doing those things?

Amanda 1:13:22
Um, well, I mean, as much as like the group homes like didn't benefit me that much like it did make me see like how bad it can get with people. You know, and I don't I don't want to put that onto like my child in any way. But yeah, just part of me almost wants to like make up for lost time. Like I never you know, had that great family atmosphere. You know, I never like I said, I didn't really go to high school artists. I want to see like my kids do that and and see like, what life can actually be like,

Scott Benner 1:14:03
Have you ever felt regret for not pulling it together and being with your mom?

Amanda 1:14:09
I used to a lot. That used to be a big thing for me. But not whenever I had my daughter we kind of got closer. We're not like still the closest but we are closer.

Scott Benner 1:14:30
Okay, do you think when you say you're not the closest? Is that because you grew up? Not around her? Is it because you blame her? Do you think it's because she loves herself?

Amanda 1:14:45
No, I don't blame her at all. I think it was just us not being around each other. Like it was very awkward whenever we were and that was one of the reasons that I moved out whenever I was 17 was it was just really awkward and we didn't know like how to interact And just, you know, obviously I was a teenager just wasn't getting along with my mom, either

Scott Benner 1:15:07
your dad ever come back?

Amanda 1:15:11
I, you know, I talked to him every once in a while and I see him like once a year for Christmas, but not Not really.

Scott Benner 1:15:19
Is it? Is that that situation where he's an older man now and you and he regrets his life or?

Amanda 1:15:27
Yeah, I mean, I don't really talk to him about it, but I can imagine that he, you know, didn't really take care of themselves, like between the drugs and drinking like, he has arthritis really bad. And he ended up losing all of his teeth and he never like saved up any money. So now he's I think he's like in his 60s and, you know, doesn't have anything to show for his life.

Scott Benner 1:15:56
Yeah, that's depressing as hell okay. I'm a Europe party. Teeth by the way on dead. What's that math teeth? Did we lose the bad hygiene?

Amanda 1:16:11
I mean, I'm close with my answer that I am. That's like, one thing I'm gonna say is I'm really close to them. And a lot of them have had their teeth taken out too. I think like there's like just really bad gum disease on that side. And then I'm sure if you throw in like, hygiene and using drugs isn't

Scott Benner 1:16:30
able to visit doctors or having the hey listen, brush and floss. Amanda, you understand what I'm saying? Oh, yeah, yeah, seriously, really get in there with those rubber pics. And like you don't I mean, like really, really good at these the pics isn't

Amanda 1:16:45
clean. No, I actually use like a water flosser for the most part.

Scott Benner 1:16:48
Oh, fancy. You look at that. Show off.

Amanda 1:16:54
It was recommended.

Scott Benner 1:16:56
I want one. I'm too cheap to buy it. There. That's the modesty. I've always thought this would be way better. So much money. And I don't know what's wrong. All right. I made it. This has been a lot. Are you okay?

Amanda 1:17:12
I'm great. Yeah. Are you? Okay?

Scott Benner 1:17:15
I don't know. I got the bronchitis. But I feel weird. You know? I mean, I'm not gonna I'm not a person is ever going to complain around you, Amanda. would imagine when people complain around you, you're like, Oh, shut up. Seriously, how do you think all this perspective? Is is something you draw on day to day?

Amanda 1:17:43
Oh, um, yeah. I because I work in healthcare. And so I see a bunch of things that definitely like, like I've had experience in. So for sure. Okay.

Scott Benner 1:17:57
I mean, you're 27 You've got a story of like a, you know, like, you're 50 or 60. That you've been, you've been through more than anyone's fair share a couple of times over already. Yeah, yeah. You're really something. I'm, I'm really pleased that you did this. And I don't know how to thank you, obviously. But this was wonderful. Did we do anything or say anything that you're now like, oh, I shouldn't have said that. Or do you feel okay.

Amanda 1:18:25
No, I feel fine. Yeah, I think, like, I knew what was what I was coming on for. And I'd already kind of prepared myself so

Scott Benner 1:18:34
well, this is great. Let's put this out of Christmas.

Amanda 1:18:39
Man, do you hear?

Scott Benner 1:18:40
Oh my god. Yeah, like, don't you think I should? I should throw this one right out a couple of days before the holidays. So people can feel freaking grateful Amanda be like, Oh, I was gonna complain. But then I realized that none of the stuff that happened to Amanda has ever happened to me. So I'm just gonna shut my mouth and move forward and smile.

Amanda 1:19:00
You have something real to complain about?

Scott Benner 1:19:02
No kidding. I'm gonna let you go. Because I don't know what else to say. I just want to make sure that you've said everything you wanted to say.

Amanda 1:19:11
Yeah, no, definitely. I just wanted to come on. And, you know, I see like a lot of parents kind of say sometimes like, oh my kids rebelling and this and that. And it's not always like a black and white situation. And there's other things that can be going on and it's important to figure that out.

Scott Benner 1:19:30
Oh, Amanda, you've definitely helped and freaked out a lot of parents today no, no doubt. No doubt they're peep there are people listening right now like Oh, great. Okay, okay, let's go okay. This was gonna

Amanda 1:19:46
be like that extreme. No, no,

Scott Benner 1:19:49
your story is obviously I mean, honestly, it I joked about at the beginning but your your life was at one point so ridiculous. Still, it feels like somebody made it up. You know? Because yeah, it really does. It really feels like did you ever have that moment that people talk about? We're like, Am I remembering this right?

Amanda 1:20:12
All the time? All the time. Okay. I still like there's some times where I think about it. And I'm like, did that actually happen to me? And I don't think it was until I was older. And I was out of that situation. But I realized how traumatic everything that happened to me was,

Scott Benner 1:20:29
oh, I mean, no kidding. Like, I can't remember anything from the time I was six till I was nine. Like, if I'm sitting here right now thinking. I don't I don't have any recollection of anything. Like you don't mean like, you can remember moments or flashes, but like, you know, I'm sure I had a great day when I was eight. I don't know what I'm sure I had a terrible day when I was nine. I don't know it. So that that even seems like torture. That I don't mean that idea of like, this really happened to me it did it just listen to me. If I could grant a reset to somebody, or a do over, I would give it to you. I think you deserve it.

Amanda 1:21:12
Oh, thank you so much.

Scott Benner 1:21:14
I appreciate you doing this very much. Would you hold on one second for me? Definitely.

First, I'd like to thank Amanda for being on the show and sharing so openly and honestly. Of course, I want to thank us Med and remind you to go to us med.com forward slash juice box or call 888-721-1514 To get your free benefits check and get started today. You're looking for that Dexcom g7 You know where to look at us met. Thanks also to touched by type one.org. head over and check them out. And don't forget to follow them on Facebook and Instagram touched by type one. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#852 That Blows

Tim has type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 852 of the Juicebox Podcast

Tim is a type one he's been living with type one diabetes for quite some time. He's an adult. This is his story. I enjoyed it. I think you will too. I'm almost down to just not doing these opens for you. I don't know what to say about this episode. It's great, really great conversation with him. You know what I mean? He has type one diabetes is an adult, I don't know what else to tell you. I will tell you that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before you make any changes to your health care plan or become bold with insulin. Are you a type one like Tim? Or are you the caregiver of someone with type one? If you are and you're a US resident, you are eligible to fill out the T one D exchange survey. This takes about 10 minutes and helps people with type one diabetes. And how does it help? It helps because you're supporting type one research. T one D exchange.org. Forward slash juicebox never has it been so easy to be so helpful. You know, don't let my open make you feel weirdly about this episode. It's so good. I just don't know how to explain an hour and 20 minutes of talking in two seconds. You know. This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter contour next one.com forward slash juice box. Today I saw someone online they were so confused about why their meter was so far off from their CGM. And I looked at the meter and the photo I had never heard of it before in my life. And so I said how do you even know that meters accurate? Got to get an accurate meter contour next.com forward slash juicebox. You want to know something else? This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox.

Tim 2:14
My name is Tim. I am a type one diabetic. And I have been for about 22 years. How old does that make you? So I'm 39. I was diagnosed April 18 2000. And I was 17 years old and I was diagnosed it's

Scott Benner 2:35
gonna say you're getting ready to graduate from high school.

Tim 2:38
I was a spring of my junior year. So like a little bit of a diagnosis story it was I was I still am a classical musician. I play the French horn. And I was preparing for college auditions because I was going to major in music I had. I grew up in Seattle. And my mom and I were going to Florida to take lessons with a couple of different for insurance teachers at Florida State and I believe University of South Florida both had really good teachers there at the time. And so we flew to Florida to kind of get lessons with those teachers and tour the schools and stuff like that. And she that's when she noticed because we were at close quarters that I was really skinny and drinking water all the time and waking up middle of the night. cotton mouth drinking like, you know, five glasses of water and going back to sleep. Peeing constantly all that stuff. It's kind of funny, because I still kind of joke that I blame Florida for my diabetes. So

Scott Benner 3:52
I blame them for some things as well. Yeah, yeah.

Tim 3:55
And this was before was it? Yeah. 2000. It was before the bush Gore election, but you know,

Scott Benner 4:04
it's him getting my reference. Okay, so french horn, you do that for a living.

Tim 4:12
So, I'm a music teacher, but I freelance as much as I can. My undergrad degree was in music performance. And a lot of my friends from my undergrad degree are like, making it big time like playing on Hollywood films and stuff. And I just play in local orchestras, Brass Quintet, woodwind quintets, on Cortez. Kind of wherever and I don't need since I'm a full time music teacher at a public school. I don't need to freelance to make a living. I just enjoy it.

Scott Benner 4:48
Okay, that's excellent. And you probably named your episode. This blows depending on what else happens for the next hour. So we'll see. The French horn makes me think of trying to force A tiny bit of air or a lot of air through a tiny passage. But that's a lot like that is it's

Tim 5:06
Yeah. And it's all about the air. Yeah.

Scott Benner 5:09
Kidding. How do you become interested in that?

Tim 5:13
Well, I, I was in band, well start off my older sister was in band, and my older brother was an orchestra. And so I always knew I wanted to play an instrument. I just wanted to take piano lessons at a young age for a couple years, then started playing the trumpet. And then my my brother's best friend had been a French horn player, I remember when their band toured our elementary school. And I saw him in the horn section holding up his horn when they were going through teaching the instruments. And I was like, Oh, he's cool. And I, when the band director said, Hey, we need to switch some people to Horn you won't have to rent a trumpet anymore. We'll provide a horn for you. That was enough to convince my mom. And little did she know how much she'd be paying for music lessons. Once I started taking private lessons and practicing a lot, so I remember

Scott Benner 6:08
that moment in, in school when they introduced you to all the the instruments, and I wanted to play the cello so badly. And by the time like, I just got up in line. The cellos were gone. And the guys like you should try a saxophone. And I did not like not the same. Yeah, I did not like that did not do it very long. I think honestly, carrying it back and forth in my house a couple of times is what did me and but I'm sure I wouldn't have enjoyed, maybe I would have liked the cello. Enough. I would have tried it. I'm not certain. But yeah, I gotta eliminate it from my choice. Just because there weren't enough interest. And it sounds to like, your school did something similar. They're like, hey, we need a French horn. It's free. Come on, take

Tim 6:49
it. Yeah. very motivating.

Scott Benner 6:52
That's wonderful. Well, that's, that's really interesting. So you do it now as a as a as a profession. You teach other children, you teach children how to how to play music?

Tim 7:02
Yeah. So I I went to let's see, I went to school for music performance at in Southern California. I grew up in Seattle, and ended up going to USC. And speaking of Hollywood, like, all my teachers were like Hollywood guys, just cool. And the one when I finished my undergrad, I wasn't sure if I wanted to be a music teacher. I thought I might be good at it. And it might be something I'd want to do, but I wasn't quite sure. And I ended up taking a year off. I actually played in Mexico for a little while. And that's also kind of interesting as a type one diabetic, taking all taking all your Medtronic pump gear down to Mexico and spend like four or five months down in Mexico. And then after I finished kind of playing down there, I end up starting a master's in education, and got hired in. I'm in Orange County. And I got hired down here in the middle of my student teaching.

Scott Benner 8:09
Did you play classical music in Mexico? Or did you play more cultural stuff?

Tim 8:14
Yeah, no, it was a classical music and the occasional Mexican pop concert. Yeah. Sounds like fun. And so it was a really fun experience. I was a professional orchestra experience. So we do. You'd rehearse Monday through Thursday, nine to noon, you'd have a concert Thursday night, you have two days off another concert Sunday afternoon, new music the next Monday, and did that September through December and then came back for like a month and a half in January, February?

Scott Benner 8:44
I bet you that that makes you nimble, huh? Like it really teaches you how to how to learn and relearn.

Tim 8:51
Yeah, it's it also is you spend your entire undergrad as a music as a musician, kind of putting the orchestra life on a pedestal. And then you got to taste it. And granted, it's not the same experience as someone who plays in the Los Angeles Philharmonic, but it still I was like, You know what, this was great. But I don't feel like I have to do this to be happy. Like I thought I maybe did. And it kind of gave me permission to pursue life as being a music teacher and feel feel content with that and not like I was like, giving up on my dreams, you know, excellent.

Scott Benner 9:25
Yeah. Did you ever get to play in the marching band at USC?

Tim 9:29
I, I was very non marching band oriented all through high school. And and I actually did not play in the marching band at SC and I always get asked that question.

Scott Benner 9:42
Well, it's just an iconic image in my mind, right?

Tim 9:45
Oh, yeah. They're a great band. Yeah. Yeah, they are a fantastic band. And I my roommate played in the band and had a great experience. I a lot of friends that played in the band. I was I've always been an orchestra. And maybe when ensemble that even that's like, I prefer orchestras.

Scott Benner 10:04
Alright, let's ask the real question here. Tim, before we move on, can you get girls playing the French horn?

Tim 10:09
No, no, I shouldn't say that. It's not true. I did not meet my wife playing the French horn. So, okay, fine. I'll just say, Oh, no. You said no, no. Yeah, well, actually going back. So when I was in middle school, I started playing the horn in sixth grade. And I started playing the guitar in seventh grade. Largely because, number one, they wouldn't let French ones play in the jazz band. And number two, I knew that French horn wasn't gonna get any girls

Scott Benner 10:39
did the guitar work?

Tim 10:42
Vaguely. It's a lot more about confidence than it is about what instrument you play. And that's, you know, I was never confident. I think

Scott Benner 10:51
that's something I think even visually confident people, it doesn't seem to mean as much about how they look even confidence. Confidence plays a big part. Anyway, so are you forcing any of your children to play an instrument or do they seem interested?

Tim 11:10
Well, I am, I'm always a fan of exposing them to lots of stuff and seeing where their passion lies. And if it's playing an instrument, that's fine. And if it's something else in the arts, that's fine, too. But you better believe there'll be lots of arts right, so my daughter is at a incanto summer camp right now.

Scott Benner 11:31
Oh, wow. That's really cool.

Tim 11:32
I still she's six. She's the right age for that.

Scott Benner 11:35
Without any hesitation. If you asked me the best concert I've ever been to. Yo Yo Ma playing Bach Cello suites. That was it. It's the best

Tim 11:42
thing. Oh, yeah. I played with, with Yo Yo Ma in college. And it was a fantastic experience.

Scott Benner 11:47
No kidding. Here we went. Go ahead.

Tim 11:50
I'm sorry. He's every bit as great as his reputation precedes and he's also every bit as humble and kind.

Scott Benner 11:58
It seemed obvious. He just he, we were at the Washington cathedral. And it's a very small stage. We drove all the way to Washington from New Jersey to say it and I think we're about eight rows from the side of the stage and he just came out, sat down, spoke for 30 seconds. Played. Got to the end of the suite, stopped, stood up spoke for 30 seconds sat back down played again. Just rolled right through them. It was did you roll through all six? Yeah. Was something else? Oh, gosh. That's

Tim 12:26
amazing. Yeah, it was.

Scott Benner 12:28
It was one of the most amazing things I've ever seen live. So and it sounded it sounded better than I imagined it was going to.

Tim 12:38
It was we played it was right after his Ennio Morricone album came out. And we did a bunch of music from it was like, like, like the mission and good, the bad and the ugly and stuff like that, that we played with him.

Scott Benner 12:52
Wow. Sounds fun. Okay, so you get diabetes when you're 70. Do you have any brothers or sisters? Does anybody else in your family have type one?

Tim 13:00
No one has type one. Grandmother had type two. But autoimmune stuff was pretty rampant in my family. So my grandmother died of scleroderma. And she had been a smoker her whole life and so slow drummer, like turns her tissue hard, weird autoimmune thing where it turns her tissue like really hard. And it has affected her lungs. Oh, and so that's what took my grandmother. on my mom's side. My mom has it's actually gone into remission, but her motto myositis. When she was in, like, when she was young, like probably about younger than were how old I am now. So I think she was in her 20s or early 30s when she had her moto myositis. And that ended up going into remission. That's also autoimmune. Everyone seems that well, no, not my oldest brother. My mom and my sister all have thyroid problems. I have Hashem overdose also, I was diagnosed with that, I think like 2010 or so. So it was about 10 years after my type one diagnosis. And then my daughter just diagnosed this month with celiac.

Scott Benner 14:22
Okay. And you have two kids.

Tim 14:26
Yeah, my son is 19 months. And so far, everything's a okay, we're planning on we did. Right when we were going through all this bloodwork for my daughter, we did trial net. And she was negative for type one auto antibodies. And so hurray, it was fighting one small bit of one small bit of positivity in the midst of other difficult medical diagnoses. But when my son turns to I'm planning on doing trial net with him as well just to see,

Scott Benner 14:56
okay, that's funny because I'm looking up thick You know, when, when people talk I google and a lot of the word rare, fewer than 2000 or 200,000 cases a year pop up when you're talking the sclera, DOMA or Derma, could it could impact anywhere but it it specifically impacted your grandmother's lungs? Yeah, yeah. She

Tim 15:19
had been a lifelong smoker. Okay,

Scott Benner 15:21
so maybe the weakening of from the smoking might have a draw to that area. Is that what I'm thinking? Or maybe yeah, you're susceptible perhaps.

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Tim 18:39
Yeah, I think so.

Scott Benner 18:42
And then Ooh. DERMA town. What is it Derma termies. microsite

Tim 18:49
moto myositis your Moto myositis

Scott Benner 18:53
and in full inflammatory diseases mark my muscle weakness and a skin rash. How long did it impact your mom?

Tim 19:00
Um, gosh, just a few years, I think. And it was it was the point she said that her muscles were affected where she couldn't even raise her arms above her head. And yeah, I know, it was really difficult. And then it went into remission. Just so. Yeah, like she's not affected by right now. So

Scott Benner 19:20
and she's in her 60s now. I'm guessing by your age.

Tim 19:24
She's in her 70s 70s.

Scott Benner 19:26
Okay, yeah,

Tim 19:27
I my my. I'm the youngest of four and my oldest is 11 years old and meet my oldest brother. So it's a bit bit of a spread between us.

Scott Benner 19:35
Well, there might have been a gap in there where your mom wasn't up for making a baby, too if she wasn't feeling well, right.

Tim 19:42
It was. She had the oldest two and then there was a big gap and then she had my brother and me.

Scott Benner 19:48
How did your Hashimotos present?

Tim 19:52
Um, I didn't recall necessarily having all kinds of weird symptoms, but I went into my endocrinologist and my endocrinologist always kind of as a matter of course would feel my thyroid. And so I went in this time and he felt my thyroid and says, Oh yep, you have a goiter, you are passionate motos. I'm going to send you in for an ultrasound to confirm. And then so they did an ultrasound on my neck and and then started me on label thyroxin. Yeah.

Scott Benner 20:29
Just take batteries take a T three supplement as well. Oh, so

Tim 20:32
that's I actually do take it through T three supplement as well now, which kind of goes back to just kind of recently, it was about probably a year and a half ago was right after my son was born. I started having these really weird symptoms. And it was it was like gastroparesis symptoms and at the time, I didn't know what gastroparesis was. But I had just, I had what was the book that I looked at? It was it was the Bernstein book, which I'm not a big proponent of but I was looking through and I remember reading something about gastroparesis. So I went back and looked at the Bernstein book, and he had this whole thing talking about the symptoms of gastroparesis, and I was like, that is what I'm experiencing, it was like, I would eat I would only be able to eat a little bit and I'd feel full and nauseated for like, four or five hours, okay. And then I was so I, I was like, This sounds like gastric creases. I went to my primary care doctor, I said, I feel like I'm showing these symptoms. I said, Okay, we'll refer you to a GI the GI doctor ordered like the it's like the barium drink test where you like drink a barium milkshake, and then they like take pictures of your stomach. But it wasn't really conclusive for gastroparesis. Meanwhile, I saw my endocrinologist we did bloodwork, my thyroid was at like 12 and this was like a year and a half ago, my thyroid has always been well controlled. But my thyroid went way out of whack. Like and I don't know why it went way out of whack, but we increased my thyroid medication like by like, two increments right up to like 150 I was I think I was at like maybe 112 He moved me up to like 150 And then that was too far and then we ended up pulling it back to like 137 And then I still was having weird symptoms. And I believe that like the last time that you and I like messaged each other it was like over up iron supplements. Because I messaged you about like iron supplements and I you talked about your low iron issues. My iron was at like 11 though.

Scott Benner 22:49
Yeah, that's low that make you feel like you're gonna fall right over on top and then you can misconstrue that with thyroid symptoms too. Huh?

Tim 22:57
Yeah, yeah. But my my after the doctor fixed my thyroid dose that gastroparesis. symptoms resolved within a month. Yeah, because it wasn't gastroparesis. It's the it was Yeah. Thyroid induced dysmotility.

Scott Benner 23:18
Yeah. Hey, I'm gonna say about that. Were you very stressed about the baby at that time or anything like that?

Tim 23:26
I don't know, I was particularly stressed about the baby

Scott Benner 23:30
or anything like, you know, something that could have you had a virus and illness, something that could kind of throw you into flux for a while? Yeah, I

Tim 23:38
don't, I don't think so. I mean, this isn't the heart of the COVID stuff. But I, we never got COVID. So we were always pretty careful. There's they're actually, I'm sorry. I changed when my my school like, when everything closed down. Like in spring of 2020. My district opened up a virtual school. And I actually transferred to it, just because I it was still so early, and I just didn't want to be back in person. Like, just, you know, they all they're saying, you know, if you have type one, and you're well controlled, it's not going to give you necessarily a worse outcome. But I was like, I don't want to mess with this. So. So I went to a virtual school and I've actually stayed there. So now I teach. I don't teach band choir anymore. I teach like guitar over zoom and music appreciation and songwriting and things like that.

Scott Benner 24:35
So you're teaching strictly over zoom. So yeah, you can teach the guitar I guess you can, right? You can. I mean, I saw Metallica teaching people how to play riffs the other day in some paid service. So I assume it's this idea right?

Tim 24:49
You know, a works pretty well. You use a lot a lot of other things like you have to use other like, that's a quick take quick little snapshots of their own playing like after every lesson. So He asked them to make like a flip grade, which is like a short little video or something like that to show that they're practicing the skill you're working on, because they're all muted. So there's no way that you can like really know how they're doing unless you're doing those other things. But yeah, we can, we can do it.

Scott Benner 25:15
Also with large class, like,

Tim 25:19
under 15. Kids, but yeah, well, I

Scott Benner 25:21
mean, if you're, if it's music, any, anyone over one is large, because you can't so there's no audio. So are you? Are you studying their their finger work and things like that, I'll look

Tim 25:29
at their finger work. And then I will have them I'll show them a technique. I'll give them time to practice it. Maybe like have them work on an A chord. It's like a beginning guitar class. So it's like, like, basic chords and basic note reading stuff. And then, yeah, they'll make a little video of whatever the scale is, like of them playing a C chord or a G chord, or where

Scott Benner 25:56
How long do you let somebody go before you tell them? They're not good at it? Oh, I

Tim 26:00
don't I don't tell people. They're not good. Never kidding.

Scott Benner 26:02
Just keep going. Okay. Like, I

Tim 26:04
mean, people know if they're not good. But I will tell them if they've been playing tests, I'll, I'll give them accurate score.

Scott Benner 26:13
But you never pull someone aside and go, Listen, you're wasting your time. This is never gonna come together for you. It's no

Tim 26:18
not not with the phase that I would be. I mean, if I was like a college professor, and like someone was trying to make it for a living like that, sorry, buddy. You don't have what it takes. But not but no, not like, not for, you know, I, I've only had I've been teaching music for 15 or 16 years, and I've only had one or two kids go professional. And that's fine.

Scott Benner 26:41
So that would be the expectation, right?

Tim 26:44
Yeah. Well, the expectation is for teaching music for kids is that they're going to hopefully learn to enjoy music,

Scott Benner 26:49
right? Yeah, no, I imagine. Does that work? Or do you not? I mean, like, do you see it translate into their lives? Do they? Are they listening to music that you're surprised by? Or do they appreciate things that you wouldn't expect for their age when they're when they're playing?

Tim 27:04
I think so. Not all the time. But I think so. Yeah. Yeah, I think. And then you can see kids, I remember having kids were like, I had a kid who didn't really even want to be in band. He wanted to be an ASP, but ASP was full. And then I got him started and on. He was on trumpet, and I switched him to French horn. And then he like went on to major in music. Like he really took off like, so. Like, you have kids that don't know they love it. And then you teach them some stuff, and then they take off. Wow, that's really rewarding. What is ASP? I'm sorry. Oh, it's like, student leadership. Okay. I

Scott Benner 27:39
thought it was like a porn genre or something was I don't know what. Like, Jesus, I know. Kids are doing stuff I don't even know about anymore. Yeah. Okay. So alright, so Okay, wait a minute, I want to go back to the Hashima. So Hashimotos presented the way it did. And you took care of it. And but you added T three. What?

Tim 28:01
Yeah, so I was still having weird energy things. And I just my thing I really liked about my inner my current endocrinologist, not the same one that diagnosed me with Hashimotos. But he, I didn't have a Dexcom before I saw him. I didn't get on the pod before I saw him. He has been always very upfront about current tech, and advocating for it. So I currently I currently loop and I, I use Omnipod and Dexcom. And he has been supportive all along. He hasn't been like, Hey, you should look i That's all been me. But I said, you know, I want to do this. And he's like, do you understand how the settings work? And like, yes. And he goes, okay. Let me know if you have questions, you know, so. And then he's always if I'm like, hey, I want to try. You and Jeff, because the ASP isn't covered right on my plan. We tried it I actually had the same experience as your daughter burns, burns, burns, burns and pods all fail but like a day and a half in Okay, so I went back to novel Novolog

Scott Benner 29:17
her parla last and she just so fast she could she could take the fiasco but it made her very sore at her so yeah,

Tim 29:26
I I can take it via syringe I keep a vial of it around for if I'm like stuck high. But because it works and it works fast by syringe and it doesn't burn by syringe, but in the pump, it burned and then I would get inflamed. My site would get inflamed and it would fail by the end of the second day. Yeah, always that's interesting sometimes earlier

Scott Benner 29:49
we kept it around to we use it with a syringe once in awhile to I'm sort of like, you know, let's stop messing with this and just go crush this real quickly. The loom JEV she came to me within hours and said, I'm taking this pump off right now.

Tim 30:03
Yeah, it burns.

Scott Benner 30:04
Yeah, that that she didn't she didn't jive with very well,

Tim 30:08
I wish I hadn't but because I liked how fast it worked Oh,

Scott Benner 30:10
I really enjoyed fast it made it made an actual difference in her in her blood sugar's and that's saying something and it created a lot more. A lot fewer choppy lines kept things more smooth. Just and you know and kept you from having to Pre-Bolus as far out it was it was very nice. Had it not stung or she would be definitely using it right now. I'm sure it's working for plenty of people. It just sadly didn't work out for her. Actually, I wanted to tell you that before T three for Arden. So Arden takes cider mill as her T three.

Tim 30:50
My son takes mine's like a cider mill generic. Okay,

Scott Benner 30:53
my son takes Armour Thyroid, SS T three. And for him, it's just it's a good balance for him. His energy is good. His muscle tone like everything just works for him. And add he's a terrific endocrinologist though, especially for thyroid and but aren't and so Arjun tried to armor because coal was using armor didn't work for. So Addy moved her to cider mill and boom, she's good again, without cider mill. Here's the example. You know, you know, in the yearbook since you're a teacher, you can buy like an ad for your kid. Based on it basically just says like, congratulations, you graduated in the school, make some money off it, you throw a picture and you write something. That's it. We took one lovely photo of Arden and surrounded it by I think eight or nine photos of her just slumped over sleeping in our house in the strangest places, like facedown on a countertop or in the fetal position. But up on her knees and her head on the floor or under a blanket or under a jacket. We had so many photos of her just asleep in the string sad and funny. Yes, exactly. So I forget exactly what it says. But it says something like you know art and we're very proud, whatever you would say. And at the end it says if you see our daughter sleeping at college, please put a blanket over her. And but, you know, she just I mean she'd come home from school and we had like a barstool, you know, a cold piece of stone. And she just lay down face down on it and go to sleep. And it's and then you give her that T three and I'm telling you in mere days, it's over. It's just

Tim 32:29
gone. Well kind of a percentage of because the way my endo explained it is the the T three is five times stronger than T four. So like, I was taking like 137 of t four and he reduced it to 112. But they gave you five micrograms of T three?

Scott Benner 32:46
I think so. I think that's five mils. five micrograms. Yeah, yeah.

Tim 32:51
It's interesting. Yeah, that same amount. Yeah. He reduced He reduced my, yeah, he reduced my T four, which is levoxyl, which is the one that actually shaped like a thyroid. And he's like, Yeah, you we've talked about how you talked about how generics thyroid pills like to be careful about. And so by doctors like that levoxyl is the generic I prescribe because I like it. It's consistent. And we're

Scott Benner 33:18
good. Might both of my kids take tiersen as their T four. Which is a just a pure form of it. It's an a cap capital, what would you call it? It's not a tablet. It's not a capsule. It's a gel cap. Thank you. I don't know why that word escapes me. One of them is at point seven. And one of them's at point eight, five. I'm not sure which is which at this point, to be perfectly honest with you. But anyway, that's so there's a ton of this and your family, you know, your your do you say your daughter has celiac?

Tim 33:48
Yeah, just diagnosed we're really fresh. Okay.

Scott Benner 33:52
Anybody else in the family? How did you figured out her celiac.

Tim 33:55
So she's very small. She was like, probably like 10th percentile when she was little, like very little. And then she's kind of slowly creeping down. She was at fifth percentile when she turned five. And the doctors like they were watching this closely. Now. fifth percentile is a big deal. If she gets any lower than that we need to really look at what's going on. Yeah. And then when she was five, we did a full panel of bloodwork and a bone X ray on her wrist to see her bone age. And the her her celiac indicator level is that it's the level of auto antibodies against against gluten in the bloodstream was like, right at the borderline, like, borders. It's like 20 and she was at like 21 And so they'll be like, Okay, well, that's a little concerning. Let's watch it for a year and see what happens. age six, we did the same test she was over at like 86 So um they're like, Okay, that's conclusive for celiac. So we'll refer you to the GI. She just did the endoscopy, like the beginning of this month. And then that came back conclusive. But she's not symptomatic, other than being small, and occasionally complaining about tummy aches, but not chronically,

Scott Benner 35:18
but they're going to set her diet. Yeah,

Tim 35:21
we've already switched her diet. Okay. So as soon as she came back with the positive endoscopy, then we switched her diet. Okay, so we've already kind of transitioned our kitchen off of gluten. How long has it been? It's beginning of this month.

Scott Benner 35:37
Oh, very recent. So you shouldn't even ask if you've seen any difference.

Tim 35:42
Yeah, it's too soon. But right now we're just getting used to it and learning how to eat at restaurants and things like that,

Scott Benner 35:48
right? Did the whole family switch

Tim 35:52
our household, but like our kitchen, just because we don't want her to get cross contaminated. But it's important that my son continue to eat gluten. That's what our GI doctor said. Because if we take it out of his diet, he could develop an actual allergy to it to it. So he said that it's actually important that he continues to get it. So we're trying to figure out how to do that. But we'll figure it out. Like, you know, if we go to a restaurant or something like that, like you can have the bread and she can't, you know, so. And so we're trying to keep it in that way.

Scott Benner 36:30
Gotcha. Have you noticed any improvement for yourself stopping gluten? Sometimes people stop and they're like nothing changed. Even if they don't have a problem with it. And sometimes people feel like it was a good thing to do.

Tim 36:41
haven't noticed yet. Yeah.

Scott Benner 36:43
Thank you would if you were going to interesting, your wife, I'm assuming is just waiting for a moment when the three of you turn your back so she can run away. I'll be like, Oh my God, what's happening? Does she have any issues on her side? No, not really didn't attract a girl.

Tim 37:02
One now What? What? With with our son actually blinking if it was my Son or Son or daughter. It was our son. She had gestational diabetes. Okay. Wait, no, it was what

Scott Benner 37:22
is not funny. You don't know.

Tim 37:24
I Yeah. Why? Why am I blinking on whether it was which kid it was?

Scott Benner 37:28
Didn't see my daughter or did it not seem like a big deal?

Tim 37:33
It wasn't a huge deal. It's probably just eating more low carb and managed it that way.

Scott Benner 37:40
That's a great look into what life does to you right there. How old are you? How old your oldest? Six Six. So in the last six years your wife's had gestational diabetes and you're not sure with which pregnancy

Tim 37:51
sounds terrible? No, no, it's gonna listen to this and laugh and

Scott Benner 37:55
laugh at you we're not talking to you for three days one or the other.

Tim 38:01
Well, the thing is with with my daughter she had she ended up having sorry, my brain just went foggy house

Scott Benner 38:12
your blood sugar. Okay, you want to take a look at your CGM?

Tim 38:15
No, I actually I really high why don't I go high? I think I'm I think I'm stressed out talking to

Scott Benner 38:19
you. Stein excited. That's all demo. Basically celebrity. I got like

Tim 38:23
6.6 units of insulin onboard and I'm rising.

Scott Benner 38:26
No kidding. Yeah. Just at the beginning. You said I'm not nervous. This is fine. Yeah, yeah. Let's not try to figure Yeah, listen, it's a it can be can be scary. Talking to a person with as big of a public profile is

Tim 38:41
kind of a big deal. So you have all leather bound books. Your apartment smells like rich mahogany.

Scott Benner 38:50
That's not what's happening at all. But I mean, you and I have texted about like iron supplements. I don't imagine you would have been nervous to talk to me, but that's really interesting. Do you want to get a drink of water or anything? You okay? No,

Tim 39:03
I'm good. Okay.

Scott Benner 39:06
Okay, so your wife may or may not have had gestational diabetes and other things happening, but God knows what they were. That's a long time ago. Who cares? Really?

Tim 39:15
My daughter was born preemie and my wife had, like 21 days in the hospital. No, sorry. Two weeks on the hospital. My daughter had three weeks in the hospital. So Wow. It was my daughter was in the NICU for three weeks. So there is enough trauma there.

Scott Benner 39:34
Right now it's a lot to I'm telling you. It's a lot having kids is stressful. Forget the rest of it. Forget if it goes. If it goes right or wrong. It's it's still very stressful. How do you enjoy? Well, that's not my question. How did you manage prior to looping?

Tim 39:51
Okay, so diagnose. I did MDI for a few months and then with it by July, and I was diagnosed April Oh by July I was on a Medtronic pump. Okay, so I was doing Medtronic pumping for my senior year and then all the way through college and then till about um I went to an omni pod probably maybe eight years ago maybe less. And then I right about the time that we got married. That was 2009. I was trying the Medtronic CGM. You know, the old harpoon. It was terrible. It was. It was such a deep insertion and it like almost always bled. I remember. We were at our rehearsal dinner, and I had an in infected CGM sight from the Masonic harpoon. And I had to like pull it out in the bathroom of this big the Spaghetti Factory that we are eating our rehearsal dinner at and like gush blood all over the bathroom. Like it was, it was gnarly. And I was like, I couldn't wait to be done with that. And I was not wanting to try CGM again after that. Until so stated my Medtronic pump for a while. And then my, my endocrinologist, the one that had diagnosed me with with passionate motos. He didn't retire. But he closed his practice, because he came to medical became the metal direct medical director of the hospital, or like the diabetes director of the hospital, they have a diabetes Center. So he was closing his practice to like, focus on that administrative role. And then I was like, Well, you know, it's fine. I'll just control my, I'll just see my local my PCP for diabetes related stuff. And, and this is still doing, you know, poking my finger, hopefully four times a day, and managing with my pomp and Mike, my control was just not good. It was like, mid sevens, if I was doing well. I think it went as high as the mid eights. I think one point I got up to the low nines, just wasn't good. And then finally, I was like, it was just wasn't really getting better with my doctor. And I was like, I'd like to see an endocrinologist again, that endocrinologist was my current new one. And he was the first thing he's like, I want to get you on a Dexcom. And I was like, Well, I tried this other Medtronic. One. It was terrible. And he's like, Dexcom is way better. Try it. Okay. And it was amazing.

Scott Benner 42:45
I have questions. Hello, sir. Thank you. Oh, just out there. Because I have a few questions. First of all, I just want to let people know, the Old Spaghetti Factory does have open positions if you're looking for a job.

Tim 42:56
And if you want to clean up blood out of the bathroom front, it might still be some they're in one of them. Yeah, the one in Fullerton, California.

Scott Benner 43:06
Can you imagine people are like, Oh God, I go to that one. Trust me,

Tim 43:10
there's bound to be listeners to go to that. Well, I'm

Scott Benner 43:12
gonna say whatever happened to him in that bathroom is not nearly the worst thing that's ever happened in the Spaghetti Factory bathroom. Which, by the way, a way to splurge on that on that meal. It's really nice.

Tim 43:22
We kept our we kept our wedding under budget. Like we were

Scott Benner 43:25
like Intel when you said the Old Spaghetti Factory. Yeah,

Tim 43:29
I mean, I think we kept our wedding under 10 grand, which is really hard to do.

Scott Benner 43:33
This meal might have been at least $75. I've never been to a Spaghetti Factory. I don't mean though. All I know is that if I try to eat at a place called the Cheesecake Factory, I don't know if it's any relation. I will become physically ill for many hours afterwards.

Tim 43:50
Oh, yeah. Yeah. But yeah.

Scott Benner 43:52
So So tell me first talks about your management you said, you know, if I'm lucky, I'm in the sevens. What did that mean? Because we're not talking about such a long time ago. Right now you're painting a picture on 2009 Is that right? Right around them? What Weren't you doing that you could have been?

Tim 44:09
I mean, I wasn't poking my finger like before and after every meal. So I'd usually do before but usually not two hours after so never have a real representation of like, whether the insulin you gave yourself was working Pre-Bolus thing wasn't a thing. So sorry, my microphone is like drifting down it's on a little boom. Justice hopefully doesn't Creek

Scott Benner 44:33
figured it was in your vision. You could just see it dropping. Yeah. So

Tim 44:41
I bought I invested when I started teaching from home I invested in a really nice.

Scott Benner 44:45
No, you You sound to our microphone. Which one is it? It's a blue spark. Oh, it sounds great.

Tim 44:52
It's like a yeti but it's actually an XLR cable microphone, not like a USB microphone.

Scott Benner 44:57
Oh, yeah. I can't expect everybody to do that. Um, But good mics makes God happy. Okay, so were these things were these besides the Pre-Bolus? Well, you said Pre-Bolus thing wasn't a thing because you didn't do whatever because nobody told you about it.

Tim 45:10
No one ever told me I was always told to give myself my insulin when I eat. And there was never emphasized that I should do it before. Okay. And then, you know, at that point in my life, I was lucky to give it when I eat, oftentimes I would eat and then be like, oh, shoot, I forgot. And then I'd give myself insulin.

Scott Benner 45:29
So you get insulin when your blood sugar was 200. Maybe sometimes. Oh, easily. Yeah, but I mean, no CGM. So

Tim 45:34
how would I know? But yeah,

Scott Benner 45:35
and you weren't testing later. So you would just so you'd eat. Okay, so maybe you would test and say, Alright, my blood sugar is 150. And I'm about to have lunch. But then you eat take in. I mean, the Spaghetti Factory, we're going to call 170 carbs for your meal. That salad looks like it has 40 carbs in it. And I love that in a restaurant. You're like, it's a salad. I'm like, is it and anyway, so you're, you're you know, whatever your meal is. You eat your blood sugars going up from there you Bolus but you never check in again to see what happens. Yeah. And it's still it's still you're in the sevens. Yeah, oddly, oddly started creeping

Tim 46:14
up a little bit. But yeah. Okay. And then at this time, too, it was if I was making changes to my insulin it was with when I was in the endocrinologist office, looking through my inadequate charts. So, you know, we're still at this point, you still have the logbook? Yeah. I was passed that I think when I was diagnosed in high school, I was listening to someone. Recently, on the podcast, he was talking about fudging numbers in your logbook, when you're a kid so that you don't get yelled at by your doctor. Yeah. And I was like, I remember doing that number. Yeah, like, so. Like, I just look at all these blank spots. I'll just write a you know, 200 there and a 150. There, whatever, make them feel good. But you know, I was past that point. So I was willing to own up to not checking my blood sugar enough. But yeah, once I got the CGM, that was helpful. But it still was, like the the indicator of a bad job that I was doing. So you'd start to see like, oh, yeah, I'm spending a lot of time spiking, or I'm on a roller coaster or things like that.

Scott Benner 47:20
Yeah. To generate. Oh, it's generational for people who came up like you. Getting a CGM did exactly that. It was like, Oh, look how bad I am at this is how it's how it felt. Right. Yeah, absolutely. Which is, if you've been able to get past that.

Tim 47:36
Yes. Yeah. So go back to I guess it was my daughter was a was a, maybe three. Before my son was born. I was I think I was on Omnipod at the time, but I still wasn't like, like, wasn't looping and wasn't taking it all that seriously yet. Okay. So when I was diagnosed back in high school, there was one two other kids in my high school that had diabetes, one of which really went out of his way to become close friends with me regarding diabetes and be diabetic buddies, right. And here's a guy named Paul was awesome guy, he was diagnosed at like age four, we both had Medtronic pumps, we would always get together in the morning and be like, Oh, I was changing my pump site this morning. And, you know, exploded blood all over the place. Like, it was like, we would share stories with each other and group. We're good friends. And fast forward. Like, you know, I'm in California, he's up in Washington, but then I heard that he died. And I don't really know the reason, but I I guessing that it had something to do with diabetes. And also, I had had an eye test recently, where they said that there was a lesion on my eye. And so those two things together, were the, the holy crap, let's get this gets get my act together, right. My daughter was maybe three and it was I was like, I just know, we gotta get this together. So at that point, I was like, I'm going to do whatever I need to do to get my diabetes under control. There was a friend of mine at church, who his sister was type one and a nurse. And she was a big proponent of low carb, so of ketogenic and so that was my first thing was like, Okay, well, I'm gonna change the way that I'm eating so that I can make this easier and have better control. So I committed to eat that way for a year and I started eating low carb, and my agency dropped below sevens. So it was like six line one 6.4 At the highest, pretty straight lines. And but what I noticed eating that way was this is probably the 2018 that I was doing this insulin resistance became a real issue. So if I was going up either from you know, your body, you know, releasing hormones or whatever, or a small amount of carbs that you take in, it seemed like no normal amount of insulin would bring it down. And no, even no increased amount of insulin would bring it down, it would just be stuck. And until you'd stacked all of his insulin on it and came crashing down, right, so that insulin resistance part of it was, like, really a big deal. Also, like, at that point in my life, I was starting to like gain a lot of weight. Partially because I was kind of eating. I was eating like, I was a 20 year old when I wasn't anymore, right? And partially because I think I was having this insulin resistance issue. My doctor actually put me on Metformin. saying like, like, you know, you're having insulin resistance, which give you Metformin, see how it helps, it helped me lose a little bit of weight, it lowered my insulin needs by about a third. And then then I went low carb, I ended up not needing the Metformin anymore, and I lost a whole bunch of weight, like I went down to a much healthier weight. I'm like five, nine, and I weighed I think, at the most I was like 215. And then at this point, I went down to like the 180s then then so the insulin after a year of eating that way, I was just finding as like, Okay, this insulin resistance thing is really like discouraging. And so I started looking at other things like other ways of eating or what you know if there's other issues and or what might be helpful. And I came across the mastering diabetes guys. Yeah. And they proposed purport a plant based whole food, very low fat vegan diet, and their whole thing is we make this diet will make you super insulin sensitive. And I was like, Okay, that sounds like the solution to my problem. So I was like, I'll try that for a year or so. And I tried that. And then I lost even more weight and went down to like 175 which is like the lowest I weighed since high school or college. did find when I was eating really consistently that way that I became really resistant to insulin. I was also exercising more which helps

Scott Benner 52:49
you I think you misspoke you were you said resistance.

Tim 52:53
Oh, I'm sorry. Sensitive, right. Thank you. Thank you. Yeah, I was becoming more sensitive to my insulin less insulin resistant, and I I was finding really helpful but my family wasn't eating that way in that made it kind of difficult and I and then the pandemic hit, and it was just a lot harder to stay as clean on it as I was I was still eating that way but I wasn't eating as clean like as allowing more oils and eating bread because I started doing the home sourdough baking thing. And before my daughter had celiac, right, so I was finding that it was being it was less beneficial. And then then I was like, I'm not sure if I want to keep up with this and then that's about the same time that I really discovered your podcast. Okay. So here I was like, like, oh the answer to diabetes controls and eating a certain way and then and that also, I started looping about that time too. And just set it up all on my own like without much guidance as to what my numbers needed to be and you know, looking at the loop and learn stuff online is helpful too but so discovered your podcast was looking at all this different stuff about loop about looping, which is really really helpful. I still don't feel like my numbers are completely as dialed in as they should be. But I working on that. I might pick your brain on that a little bit. Okay. And, but really what I was like realizing is that I don't have to eat one of these ways. If I start doing other things like if I start making sure my basil is really dialed in and Pre-Bolus saying and revising the way that I Bolus for fat and protein, I think And I will have the results I'm looking for

Scott Benner 55:02
and be able to stop pretending that you like brussel sprouts. Yeah, yeah. Because nobody

Tim 55:07
actually stopped. I don't mind brussel sprouts but but that's that's, that's only if they're cooked in olive oil with the sonic vinegar, Tim. So

Scott Benner 55:14
Tim, have you ever heard anybody say I don't mind a chocolate chip cookie? No one's ever said it that way. You don't I mean,

Tim 55:20
you're not wrong. Yeah, no one

Scott Benner 55:23
goes, Oh, Doritos. I don't mind them.

Tim 55:28
Those things are genetically engineered in the lab.

Scott Benner 55:30
I be delicious. I wish people understood that a Dorito. In 2022 Doesn't taste like a burrito from 2019 Doesn't taste like one from 2010. Like, it's fascinating how they've, I'm assuming there's like less and less actual, like food in them as they go along? I don't know. But whatever. The some, some mad genius works in those those labs making those chemicals. So things taste the way they do. It's It's really It's fascinating. But I listen, I just don't like brussel sprouts. But that's but but but I'm taking your point, which I think is that you found a number of different ways to help yourself. And now it sounds like you use a blend of all of them.

Tim 56:13
I would say so. Yeah. And I think that the the most significant thing is a lot of your advice on Pre-Bolus thing, which again, like I told you was like, wasn't something that I was told to do. But it makes so much sense. And when I actually implement it correctly, it works really well. And when I don't implemented correctly, I really noticed a difference all

Scott Benner 56:33
time on a mountain. That's it. Yeah. Yeah. Absolutely. i This is my favorite part of the podcast where people say nice stuff about me. So I didn't mean to talk over you just now. I'm sorry. Yeah, well, no, I'm happy that it meant something. I hear people talking about those. Those vegetable boys sometimes, and I don't know their names. Are I forgotten what your what you said already? What the name of it is. But tell me again, the

Tim 56:59
Yeah, so it's mastering diabetes mastering. I think that what they say is, it can be beneficial. A lot of what they do is pointed toward type twos, but those two guys are type ones themselves. And but it, it uses that coaching model, which I feel like is unethical.

Scott Benner 57:22
Okay, hold on a second. So you can talk about that, if you want what I was gonna say first was, you can't argue with it, like Pre-Bolus thing is terrific. Understanding how it works is amazing. But the truth of it is, if you eat a Brussel sprout instead of burrito, it's going to be easier on your body, and easier on your body is going to mean less insulin, etc, etc. I'm never, you'll never hear me argue about that.

Tim 57:43
Well, and here's the thing too about about their style of eating is that they, they would they completely ignore the whole aspect of fat and protein is going to have a different impact on your blood sugar that needs insulin in a different way. Okay? They just ignore that completely because it's irrelevant to their work their style of eating. Because yeah, so involved in what they're eating right? Yeah. Because you completely take out the fat and protein only get protein from beans and the vegetables that you eat, and, and whole grains and stuff. And yes, that's very healthy. I was my blood work was the healthiest it's ever been when I was eating that way. It's really

Scott Benner 58:22
astonishing. Imagine Sure. No, I would, I would imagine that taking out extra things for your body to do makes it easier for your body to exist. But in the end, Tim, tell you Look, right. I'm just kidding. But I'm just gonna say you got to choose between. I just used to know this woman who used to say you have to choose between your ass and your face. That was how she put eating she said she goes she goes a few is about I guess she was talking about fat. Basically, you know, you want your ads to look nice. Your face to look nice is how she used to say, I don't know how accurate that is. But I could just I just picture this older woman wandering through my life going you got to choose between your ass and your face.

Tim 58:59
Okay, that expression a moment on the lips a lifetime on the hips.

Scott Benner 59:05
I think that's exactly what we're talking about. But apparently you get a nice youthful look in your face. Little job like I listen, I carry extra weight and I look 10 years younger than I am. If I was super thin, I'd look Oh, I saw Kevin Bacon the other day. He's probably 1000 times healthier than I am. And he looked 30 years older than me. So I don't know. He'll probably live until he's 120 But he looks like Methuselah. So what are we going to do? Because a lot that doesn't hit for you, right? You're not sure? No, I

Tim 59:33
get it. He's an old dude in the Bible. Yeah.

Scott Benner 59:38
Exactly. Still, by the way, I'm gonna call this episode this blows. You haven't said anything else that got me off it. So I don't want to talk about anybody specifically, but I do want to hear what you were gonna say about coaching models and how that strikes you as a person with diabetes?

Tim 59:56
Yeah. So like they're there. coaching model thing is like, you sign up, you pay way too much money a month, and they have a coach that goes through your food journals and your blood sugar numbers and helps you make the right decisions and stay motivated and on their way of eating and stuff like that. And they do put a lot of their information online not needing that. And then they also have a book and their book is good. So if anyone wants to eat, eat that way and get help, I think reading the book is fine. I don't think that's unethical. But, but I think that kind of like gatekeeping diabetes management, from a coaching model, something that can't be covered by insurance, you know, like, is kind of bizarre. Yeah. And I was, I was never interested in that. I was like, I can figure this out myself, like, and I was having success with it without needing to coach them. But it's funny,

Scott Benner 1:00:55
because to me, so I take your point, but I don't have diabetes, right. And so, but I am, I'm listening, I've existed in this space for a very long time, I've been very connected with people with type one and type two diabetes for a large portion of my adult life. I can't make right in my own heart, safeguarding information like that. But I understand it from a business perspective, you have this thing, you need to sell it, if you don't sell it, you're gonna be out of the business, we'll charge everybody an amount of money, this will keep us going will make money will exist, they'll get good information. But it still keeps some people from hear from hearing it. And I, to me, I just listen, I just figured out a way to do it where somebody else pays so you can hear. That's, that's pretty much it. And, you know, would I have had I chosen I guess if I wasn't who I am, and had I chosen to, to put everything behind you no offense that you had to pay to get over. If I did that. Not as many people would know, the podcast. And to me, it's about reaching the most people giving the most people an opportunity to have a healthy happy existence. And I found a way to do that, where I pay my bills, and I reach a bunch of people and some people do it differently. I mean, I could I know what my numbers are. If 10% of you had to pay me $100 a month to listen to this podcast, I'd be okay. You know what I mean? I might actually be Tim Hold on a second. We just do a little business here with your real quick. Yeah, truth is, I'd be making a lot more money, like a significant amount more. But I just I can't I can't bring myself to do it. I don't even know if I see it as a moral thing. It's just I'm not wired that way. But I could I could clear a couple million dollars a year if I did that. So

Tim 1:02:58
I when I was like, first deciding to go on to their style, their way of eating. I was like trying to crunch the numbers. I wasn't I wanted to do the coaching thing. And I was like, I even if I wanted to like I, it would be too hard of a financial hit for my family to do that. So yeah, it's like, and I'm, you know, firmly middle class as I'm a teacher, my wife's a preschool teacher. So

Scott Benner 1:03:27
I want to be clear that I don't make anywhere near a million dollars here. I just want to say that quickly. So, I mean, what I'm trying to say is by by, by a magnitude of order, I would make more money if I if I go over 90% of you and charge the other 10% that could

Tim 1:03:44
afford it. Make a note 59 We

Scott Benner 1:03:48
just you know, I'm 30 I got it, don't worry. I just and I didn't have to say it that way. But it is what would end up happening. I would I would just have to cut most of you away and say sorry, you don't get to hear the podcast and for the people who could remain and pay. You'd make me rich. So, you know, I'm not struggling Tim, I don't want you to feel that way. You know, but it's a it's a decision. And I mean, it's hard to argue with. You'll you'll know I gave up at the end if I do it. I'm just gonna be like Scott's gonna cash in at the end. The whole podcast just went behind behind a paywall. He's given up. But you know, I've been doing this for this is the eighth season of the show. Is it 1516 1718 1920 20 This is the eighth season of the show. Like the app, you know, not the eighth, like, you know, some crap podcasts that has 10 episodes a year and they're like, it's a season I'm like, yeah, it's two weeks your life. Like I make four episodes a week and for years. And before that I was one episode a week, two episodes a week this podcast has over 700 episodes is where as we're doing this. Yeah, and I even see that as part of how I keep you all interested. So more People can come in and learn about how to Pre-Bolus and do the basic things that I don't think should be kept from you. So, you know, to me this conversation with you today is as much about telling your story so that people who need community can feel community, as it is about hopefully entertaining someone into thinking, why don't I go find out what those pro tip episodes are about? You know, like I am, I am thoughtfully trying to help the people who are listening to the show. Yeah, you know, it works or, you know, as well as it does, I'm about to hit. I would say in the next handful of days, the show's going to hit. I want to make sure I get the number right. In the next couple of days, the show's going to hit 7 million total downloads, keeping in mind that the first four or so years of it probably only had 2 million. So I've stacked on like 5 million over the last handful of years. Today, the podcast became this this month, I think it's June. So it's June 29. Right now, today, the this this day made this month, the most popular month of the podcast ever. And if the next 30 hours go the way I think I'm going to crest, a significant download number for this month. And I see that and I just think cool. Let's do more, let's find more people teach them how to get their basil set up. Let's get more people who can decide I want to control like, you know, I want on the pod file, I'm going to I'm going to wear a Medtronic, I'm going to use an insulin pen, I'm going to use a pump, I'm going to use the pen, I'm going to figure out what works for me low carb, I'm going to have I'm going to eat vegetables, I'm going to Pre-Bolus real consistently, whatever you take out of this, that helps you is what I want for you

Tim 1:06:48
that and I just you know, I went through all these different ways of eating. And I feel like if I had discovered your podcast first I might have saved although no, honestly, it was a good experience to have eaten that I don't regret it at all. I, I mean, I'm better at cooking vegetables now than I ever was before. And so I can incorporate that into when I don't eat vegetables. But I also try to eat more vegetables than I did before this whole thing. So yeah, it's. But if I'd had your podcast, I think back then it would have saved me a bit of grief as far as some of the diabetes education stuff that maybe I and maybe if I had seen a diabetes educator, I might have gotten that information. Some of it too is like, when you have had diabetes for a certain number of years, you're like, you'll see an endocrinologist and they won't necessarily think you need to see a diabetes diabetes educator, even though they might have stuff that's helpful. So I don't think I saw a dietitian or a diabetes educator since I was first diagnosed. Yeah.

Scott Benner 1:07:55
Well, I mean, the truth is, it sounds like your friend's death is what helped you the most right?

Tim 1:08:01
Yeah, I think so.

Scott Benner 1:08:02
It's ironic do you think about that often?

Tim 1:08:07
Yeah, I think about it from time to time.

Scott Benner 1:08:11
It's terrible as you were explaining your story with him. And you're talking about meeting him before school and commiserating in my in the back of my head and the bottom my heart I'm like, Oh, God, Paul's dead. Like that's exactly what I was thinking when you were telling the story. Because you hadn't up until then mentioned the birth of your children is the reason why you fixed it, which is what a lot of people say. Yeah. Don't let your wife hear that part. That the birth of your children didn't. Didn't move. enough to take care of

Tim 1:08:40
your doctor. I definitely wanted to fix it so that I can be around for my child.

Scott Benner 1:08:45
Was she that great? The kid is that what you're telling me? You should just okay.

Tim 1:08:49
She's fantastic. She's She's wonderful.

Scott Benner 1:08:56
Sure, she's wonderful. She's a great can you imagine if we got that recording in you're like, really? The kids? She's an albatross. I have to tell you this guy. complains constantly whines can't read. It's terrible.

Tim 1:09:12
Just fixing the reading thing right now.

Scott Benner 1:09:16
No, I'm yeah, I'm obviously I'm teasing. Because this point your wife's like, why did we do this? She's listening back. But no, I mean, my point is that I mean, I've interviewed interviewed enough people apparently not to be able to say interviewed but I've interviewed enough people to know that it takes some sort of a life moment where you suddenly don't feel like you're the focus of the world. And and you start thinking about other people more than you think about yourself, and then you realize I can't die. That's exactly what it ends up being. I have to be here or I love this person so much. I can't I don't want to shorten this time. And and that's usually what gets people and hope Fully, it's before something happens to them. That's irreversible. And, and speaking of that, how are your eyes doing? Since you're managing differently?

Tim 1:10:09
Yeah, so I'll first of all, since really looping, trying to Pre-Bolus as much as I can, and I'm not always great at it, but I'm, you know, working on getting better. My a one seat my last day once he was 5.5. That's amazing. And my last time I went to the eye doctor, they said that there's no sign of diabetic neuropathy in the eyes anymore. So that all resolved itself. So Ganderbal

Scott Benner 1:10:38
good for you. Congratulations. Thank you. Yeah, that's excellent. That's excellent news.

Tim 1:10:43
One of the things I wanted to ask about Yeah, go ahead. What's

Scott Benner 1:10:46
your turn is

Tim 1:10:48
loop loop related. So I feel like my, my basil is borderline too aggressive. But it's hard to say. And perhaps I just need to turn an open loop off so I can really see. But I don't like doing that. Because I like open loop. I mean, a like a closed loop. I mean, right. But, like, overnight, I'll have some nights where I'm sitting at 65, like, which is too low. I know. I want it to be higher. But then, other nights, I climb into 150, maybe even 200, and then come crashing down. And I guess it's I can usually look back and be like, okay, my dinner was like a little bit either car beer or high fat or whatever. But not necessarily always, how about might be

Scott Benner 1:11:50
pardon age of the pod you ever notice on

Tim 1:11:53
my pods. And as I'm getting, I'm seeing my pods fail more consistently into the second day, which is frustrating, but it is what it is. And I have enough of them. My doctor writes a prescription so that I could change from me to if I wanted. But yeah, I think it is oftentimes either pods or like a copier or fattier dinner I know which I ended up. Good. I'm sorry. I'll end up like what I was also kind of making adjustments to my ISF in loop. And I was it was something that Mr. Fox was saying that I haven't met him. We live in the same county, but I haven't met him. Yeah. I think we're Facebook friends. But the he was saying something about leaving your Basal the same. And I used to have a bajillion Basal rates like back when I had, you know, other ways of doing things. But I said it's a one Basal rate, and then I set my ISF aggressively. Yeah, my sensitivity factor to be like more aggressive at like, bedtime and less aggressive as the night went on. So that hopefully it wouldn't overpower me. And but I'm still getting overpowered and waking up having bad lows at night.

Scott Benner 1:13:16
Yeah, how low?

Tim 1:13:19
I'm in the 40s. Yeah,

Scott Benner 1:13:22
I just stopped the 60s. So. So Arden used on the pod five for a while, Tim, this is going to be something now that just you and I know. So when you get off of here, you're gonna keep it to yourself, because you're not going to come out for a while and you'll ruin the timeline of my podcast. Okay, thank you, but aren't used on the pod five for a number of months. Got the real gist of it. I understand how it works and everything. And it's just, it's really listened to all these algorithms are amazing. And but we went back to loop. So Arden went back to loop but she also stopped birth control at the same time. So I'm watching her insulin needs, they're starting to go down as the birth control pill leaves her and leaves her. So I'm having to I don't want to over adjust yet. I'm trying to watch but she had like a 55 Last night at like three in the morning. And I was thinking of doing the same thing that you were thinking of which is to take away some insulin sensitivity to make it weaker in the 130 to three, four or five o'clock range overnight. I think that might help a little bit. But for you specifically what you're talking about, do you have Nightscout? Yeah, yeah. So are you noticing? You said you think the basil might be too heavy? Are you noticing the algorithm taking away the basil all the time?

Tim 1:14:44
I'm gonna look and see. I haven't looked at my Nightscout recently.

Scott Benner 1:14:47
Because I mean, there's a lot to think about, right? Like, you know, is this happening on the third day of a pod? Because if it is, then maybe that's got something to do with it. The higher blood sugars but if you're getting low is a wall of things constantly taking away basil overnight there, maybe your basil is a little stronger, or maybe your insulin sensitivity is a little strong. Yeah, or maybe they're both a little stronger, I don't know. And the

Tim 1:15:10
other thing too is a little bit hard to tell because I'll I have a, you know all the when a Ginny's tips like a one point 150% Basal increase for eight hours started after you finish your meal, your high fat meal. So I have that as a as an override. And usually when I hit that, I don't have a big rise. So that's helpful. That's excellent. So or if I have a rise, it won't be it won't be like over 150. So that's that's good, too. But

yeah, it's let's see, I'm looking at my Nightscout right now to see.

Scott Benner 1:15:53
And there's nothing wrong with you know, opening the loop up and running it like a regular system for a little while and just seeing if you're getting what you want. Because sometimes your settings do get out of whack. You know, I was talking to somebody earlier today. And I said, I said the same thing. I'm like, I'd open the loop up and let it run for a little while see how your meals go. See how your stability is away from boluses and food and see if your Basal is really working or if you're being drugged down or drifting up. Because I think the person I was talking to earlier has probably found a way to compensate their Basal being too high with their carb ratio being lower than it should almost like old school MDI care, where they kind of load loaded up on basil and then assumed you work at a Bolus for your meal as well.

Tim 1:16:39
And that's where my might be like my Basal rate right now is I think I just marked it. I just brought it down on the tiny bit, but it was like 1.75 I think it's 1.65 right now,

Scott Benner 1:16:49
and you weigh are you 170 right now?

Tim 1:16:52
No, I'm a little bit more than that. Okay, 9190,

Scott Benner 1:16:55
let's not correct. Let me see there. But and are you still taking the Metformin? No. And you're not eating the the, the fruits of vegetables anymore like that? Not as much as much I'll try to eat well, maybe maybe there's that a little bit there, too. Maybe you gave up that diet and you gave up the Metformin, those were two things that were making your sensitivity greater. So now your Basal is higher. And then maybe there's times when it just maybe your sensitivity is there for reasons we don't make maybe it's exercise or something like that. And then and now you're getting low. I mean, you've been married for a while. Would you have sex? Like once a month? Is it happening once a month? Are you getting low? Once a month? Yeah, sorry, I didn't mean to just pick out a good month. But you know what I mean, like, maybe there's another impact coming in, and increasing your sensitivity a little bit and making those lows for you, or maybe have you know, big meals and crush them.

Tim 1:17:56
We're trying to we're trying to teach my daughter to swim, and we're trying to get to the pool every day. So we can let's uh, we're like, swimming a lot. Trying to exercise. But I'm not like doing like weightlifting, which really helps. And I need to do it like,

Scott Benner 1:18:10
exercise is going to help for sure. Any kind of exercise. I'll tell you right now, if you want to know, what's great about loop over retail systems, any of them. It's a lower target, and a more aggressive attack of a rising blood sugar. Yeah, that to me is what makes it special. And for all of these systems, what makes them special is that all the stuff we just talked about those variables, some of those knowable, and then sometimes unknowable things. You can have this algorithm out ahead of you going, Oh, God, Here's more. Here's less, here's more, here's less. Because without that, you turn into everybody else who's using insulin who is feeding three loaves a day, or existing with a 250 blood sugar for five hours because they don't want to get low later. Or where are the other problems? The problem is, is that this is a constantly fluctuating situation. And you are not a computer, Tim. So yeah, you know, you get your settings as good as you can get them. And you I just expect that some days, you're going to be 55 at three o'clock in the morning. But let's try to limit it as much as we can. And for people and then

Tim 1:19:21
of course, the good news is loop will then pull me back up again. So like I'll be you know, at by wakeup time, if

Scott Benner 1:19:27
you don't make if you don't make a significant mistake with insulin. The loop is very, very good at stopping you from at least having a really bad low blood sugar incident. Yeah, yeah. I mean, you can still do it. You could Bolus the wrong time or have variables that you don't, you don't factor in. And it makes some big Bolus for something when you didn't need it. I mean, you can overpower that algorithm, but in a normal situation, I mean, nobody wants to be 50 But you know, when you go back later and see how the you know, the algorithm was taken away basil for two and a half hours and it caught you at 50. You got to think in that exact same sleeping situation, your blood sugar would be zero if it wasn't for that algorithm. Yeah, that's amazing.

Tim 1:20:13
I know. I never want to I love I love loop. Man. I love it so much. Yeah. Hi. Are you you guys are still using an orange link? We are using the orange link? Yes, yeah. So as I know that they're they're not far off from 3.0 coming out and being able to use dash pods, but like, that's all the fancy computer people are working on that one right now,

Scott Benner 1:20:37
when we switched from when we called, I called us mad. And I said, I'm going to start getting the Omnipod five. Now I want to get go back to a different pod. They said we'll put you back to where you were. And I said, Can you give me a dash? So I've got Omni pod dash is coming to the house. Now we have a small stockpile of arrows pods that we're using up. And then we'll hopefully we can coincide when the loop algorithm is ready for for dash, and then just moved to that.

Tim 1:21:08
Yeah, I was actually thinking because I have a big stockpile of arrows as to I'd like practically 12 boxes saved up,

Scott Benner 1:21:14
use them out. So pardon? Do you use them up? Keep going?

Tim 1:21:18
Yeah, so I'm gonna, I'm gonna try to use them up, I haven't ordered new ones. And then I'm going to try to start ordering dashboards after that. So I can?

Scott Benner 1:21:24
Well, the big concern of the day is is that the FDA is talking about, I'm actually going to spend some time tomorrow getting behind this online, try to move some people, this will be long gone by them. But there's something going on at the FDA where they might there. It's an X, they're trying to say what are they trying to say? Is that it was cyber cyber security and medical devices, quality systems considerations and content of pre market submissions. Except, I mean, I don't know what I got my wife reading it, they explained it to me right now.

Tim 1:21:58
I did the same thing last night. I just saw them posted that it on either loop and learn or on your Facebook group and I went online and and did the form. So right, yeah,

Scott Benner 1:22:10
yeah. So I'm gonna, I'm gonna try to put the power of the podcast behind this little bit, get people to send some notes, so that they don't protect that I'm making quotes are CGM data in a way where you can't use it? Because I mean, listen, I guarantee you that at some point in the future, retail systems will have a lower target, and there'll be more aggressive, and it'll be great. But in the meantime, and by the way, too, I want I do really mean this, and I'm gonna say it over and over again, because I don't want to dissuade people. For most people, you were on the pod five control like you something like that, you are going to have a significant increase in your health and happiness, like significant for people who know how to put their agency in the fives, and who don't see a spike over 140 Very often, those aren't going to do that for you. They're not meant to. And it's unfair to hold them up next to each other to be perfectly honest. But we need as people who I said, Wait, I don't have diabetes, people who have diabetes need for industry to be pressured into moving forward. Like we don't want any listener on the pod buys ads from me forever. You guys get the podcast because of them. They're beautiful to me. And aren't we using only positive shoes for it's amazing. I'm thrilled that company exists, but I don't want anybody resting on their laurels. Like Omnipod fives terrific make it better. And to me that's target and stopping spikes.

Tim 1:23:43
I mean, I'd be more interested in using one of those products as I've well the other thing too, is I thought maybe I'll try Omnipod five too. But then I also like so wedded to my Apple products from looping and just from doing music stuff where Apple's superior. So like. I don't want to use Omnipod five until it is talking to

Scott Benner 1:24:03
Oh, yeah, i are i handed on that. PDM and she goes Oh, what's this?

Tim 1:24:09
Yeah, I could totally see that conversation happening. Yeah,

Scott Benner 1:24:13
actually, the first time I gave it to her, she went no, and put it down on the table and walked away. Just from looking at just from realizing it wasn't on her phone. Yeah, not that the products not good or anything like that. You just it wasn't on her phone. And she went no, I don't even though she said she just went no and put it down. And then I started we're gonna do this. We're gonna do it for a while we want to understand how it works. And it might be great for you and we're gonna find out you know, so is

Tim 1:24:38
she comfortable? I know she's going to school in the fall right? Yeah, far away from you. Right so is are you going to have a little lesson on how to rebuild a loop?

Scott Benner 1:24:49
Like I'm gonna get her a used laptop, put Xcode on it and have it for nothing else and ship it down to her so that if it and when it happens, she knows how to rebuild rebuild the app and the P long line have made it so now you basically click a link to rebuild the app. It's

Tim 1:25:03
Oh, I know last time I rebuilt, I use that link. And it was the easiest thing ever. People if you don't know how to

Scott Benner 1:25:08
loop, it's so easy. The internet's amazing. Listen, and

Tim 1:25:12
I'm a music teacher, and I figured it out. We're going to

Scott Benner 1:25:15
forever be grateful for the people who, who put these efforts in. And I know that doesn't always coincide with what industry would wish was happening or what the FDA would wish was happening. But you have to take a big long look at this. It's it's magical, it's helping people. It's driving innovation. And it's very necessary and if you squelch it or hide it behind some cybersecurity both you're gonna be doing people a disservice with their health.

Tim 1:25:43
Yeah, I agree with you. And sorry, I was just thinking, I love explaining to people like, Oh, I I hacked my insulin pump, like, you know, like, it makes me feel like I'm much I'm much more

Scott Benner 1:25:59
more savvy, and I really I just give it I just, I just say there's a guy in Russia named Ivan, he did it. And we download it off the internet. And people do look at you a little sideways. But listen, I'll tell you right now, as far as tight tolerances are concerned, it's I don't know who the hell Ivan is, man. But God bless you know, thanks, Ivan. Yeah, thank you very much. And everybody, man Brown, Bob da, way more other people than Ivan. He's just the name I that sticks in my head. You know, but I mean, so many names run through my head about about people who've been putting incredible amounts of effort into this for years and years and years for, you know, largely No, no thanks. And no money. Yeah. And it's sometimes

Tim 1:26:43
less than thanks. I think I'm thinking about like, you know, like, what a taxing thing as must have been for people like Katie, of putting it together, and then having people complain, and she's done such an amazing job, getting it readable and all that,

Scott Benner 1:26:58
you know, when people are complaining to you and you're like, all I can think is, you could have just said thank you, that would have been enough for me to tell me what I've done wrong here. As I'm spending massive amounts of my life for free explaining things to you. Yeah, I would imagine people in her situation have probably felt, I mean, buoyed by it. And at times, I would imagine it was frustrating. So but it's incredibly. I'm incredibly grateful for it, as I'm sure everyone else is that uses it. And everyone else should be too if you use an Omnipod five or control IQ or maytronics thing, like whatever you using, like there are people out in the world driving innovation for you don't you don't even know there's even the there used to be this little group, I don't even know if they exist anymore. They used to hammer the FDA over stuff. And even now that we're seeing exponential growth and diabetes products is because of like a small group, like this little small nonprofit that just wouldn't let the FDA up off the mat. You know, they just kept pushing them about stuff. And that's something you get diagnosed today. You're never gonna know that happen. So yeah. Anyway, alright, Tim, I kept you longer than I said, I'm assuming one of your kids is at a bus stop right now crying because they think you don't love them.

Tim 1:28:15
And no, I I'm teaching at a summer camp that I like, have had this on my books for so I told the the director like, oh, I need to tie this morning off. So I can do this thing. And, and so like, but I told him, I'd be there at a certain time. So I should get over there.

Scott Benner 1:28:32
I'm starting to think you gotta go. Yeah, unless you want to say anything nice about me. But then otherwise, we can just say

Tim 1:28:37
something nice about Scott. I'll just say this. As much as I get a lot out of this podcast for management things, I get just as much therapy and camaraderie. And I just love hearing everyone's stories. And I learned so much from everybody. So I wanted to come on and kind of talk a little bit about my story. Not that it's particularly unique, but I feel like I have kind of a a mix of a lot of the different things that people have talked about. Yeah, no, I

Scott Benner 1:29:07
appreciate it. I thought you were terrific. And you could tell that you listen, you rolled with it so well, so I appreciate it very much.

Tim 1:29:13
Yeah. Listen. I listen a lot. My daughter's like, do we have to listen to this in the car? I'm like, Fine. We'll put on in content.

Scott Benner 1:29:19
What's? What's her name?

Tim 1:29:22
Her know her name is Ruby. Oh, Ruby.

Scott Benner 1:29:25
Ruby. Ruby. Don't tell your dad to shut my podcast off. I need these downloads kit. I know you don't understand your little but this is what keeps the lights on kid. Okay. And listen to the end to all the way to the end. Yeah, there's ads at the end.

Tim 1:29:39
And there's good stuff at the end. Sometimes you have the best jokes at the end. Well,

Scott Benner 1:29:42
the secret there, Tim is that I sometimes record those very late at night. And I am very, very unaware of myself and don't care and too lazy to go back and edit and I'll start rambling and saying stupid crap. And there's times my wife's like, What did you say at the end of that episode the other night? I'm like, I don't know what you're talking about. And it's should go back and play it for me. And I think he I probably shouldn't let that in there. But what you always do, I was making an ad last night. And I got five or six words into a sentence. And I thought there's not one valuable word in that sentence. And I just said, I don't care. And I just kept, just kept rolling. It's like, I'm not stopping. Anyway, I appreciate that you like it? I'll tell you one of the greatest things for me is that somehow my diabetes podcast is entertaining to people. Like I really Yeah, who knew? What Not me, I thought I was going to pump a booze, not

Tim 1:30:34
even a diabetic.

Scott Benner 1:30:37
Not remind people all the time. And probably it's hard to listen to, if you realize that, but there was a time where I just thought, like, I'm going to do a information dump out of my head. And this won't last that long. And it'll just sit around like a repository.

Tim 1:30:49
And when I, when I first started listening, I I was like, Wait, I didn't know the full story. And I was like, wait, is he a diabetic? Or oh, he's got a kid is diabetic. Oh, this guy knows a lot.

Scott Benner 1:31:02
What's the chance? Thank you?

Tim 1:31:05
Yeah, I, I have other type one friends that I'm like, dude, check this out. Because I know I have other type one friends that don't even use a Dexcom. And I'm like, come on. I hear

Scott Benner 1:31:14
sometimes from type ones that are like trying to get adult friends to listen. And their friends will be like, I'm not gonna listen to somebody who doesn't have diabetes, about diabetes. And like, some people will write me notes and explain like, you know, my buddies got like, a nine and a half a one C and I was like, geez, forget diabetes, like, most people apparently know more about diabetes than you do. Like, just listen to anybody who would tell you like, you know, maybe just, you know, I don't know, eat a certain way or do this, or Pre-Bolus, whatever, like this little adjustments can make a big deal. I don't understand it. And I do understand it. Like, I don't understand, like, Why do you care where good information comes from. But I do understand. I've been, you know, burdened by this my whole life. And now you're telling me some guy who doesn't even have it is going to show up in my ears and explain this to me, and he's going to understand it better than me. Like I can get where that would piss you off. You know? So yeah, it does make sense in certain situations. But I'm so delightful. You would think you would just listen for the fun of it. Yeah. Put up an episode yesterday with a girl who drank out of her Christmas tree. Were you getting that? You think the ADA is telling you that story? No way, baby,

Tim 1:32:24
that that one. And the young, the young woman who's bad exploded? Those are the

Scott Benner 1:32:29
I'll tell you what, if the JDRF ever puts out any content where some girls but explodes? I give up. But for now, this is the only place you're gonna get it. And by the way, I had somebody tell me recently like that had nothing to do with diabetes. I was like, huh, you're wrong, because it has to do with wound care and high blood sugars. And it will, someone will hear that story and think, Oh, I had a sore here or I cut myself and it didn't heal or something like that. And it will connect the it'll, it'll wire a circuit in their head for them. You know what I mean? And you can only do that with interesting content. Like you can't just like, you know, listen, if I was the ADA, I think they have a podcast, but God knows doesn't show up on the charts. So anyway, um, that's for sure. Let me just I've never listened to let me just be about people try to help people. But, you know, like, if they come along and they start talking, they want to do 15 minutes on wound care. You're not going to listen to that. Because boring. And you know what I mean? Like too much content in the world. I'm going to go watch a YouTube video before I listen that I'm going to go watch. You know, some of my favorite television show for the 17th time before I do that. I give you a podcast episode with the title butthole adjacent. Anybody who sees that and doesn't think what is this about? I don't understand you. You don't I mean, so the jump on you start listing this girl tells an intriguing story about her diagnosis that ends with her taint exploding, and just like, come on. You're welcome. Just

Tim 1:33:58
better than getting it from Florida.

Scott Benner 1:34:01
Just say thank you when I do that for you don't complain. Oh, my God. Anyway. All right. You're delightful. I appreciate this very much.

Tim 1:34:10
I appreciate you too. Thank you, Scott.

Scott Benner 1:34:16
A huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. You spell that g VOKEGLUC. Ag o n.com. Forward slash juicebox. Thank you also to the Contour Next One blood glucose meter. I'm not kidding. It's a fantastic meter. Contour next one.com forward slash juice box links in the show notes of the podcast player you're listening in now. And links at juicebox podcast.com. To G voc contour and all the sponsors. When you click on my links, you're supporting the Juicebox Podcast. And speaking of the juice box podcast we have a private Facebook group. I think it has like 34,000 members in it right now. And it is worth your time. Absolutely free Juicebox Podcast, type one diabetes on Facebook. That's about all I got for you today. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.