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Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

Filtering by Category: Dexcom

#574 Swiper and the Map

Scott Benner

Ariana is the mom of a young type 1, she also has her own struggles.

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

+ Click for EPISODE TRANSCRIPT


DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello everyone, and welcome to episode 574 of the Juicebox Podcast

Ariana is on the show today she is the mother of a young girl who has type one diabetes. And Arianna has some struggles of her own. Today we're going to talk about all of that on the Juicebox Podcast. While we're having that discussion, I'd like it if you could 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're a US resident who has type one diabetes, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box and fill out the brief survey that you will find there. That's it. You'll help people with type one diabetes and you'll support the show T one D exchange.org. Forward slash juice box. Looking for community around type one diabetes, look no farther than the Juicebox Podcast group on Facebook Juicebox Podcast type one diabetes over 17,000 people talking everyday about type one

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 Podcast is also sponsored. I just pause so long that I forgot what I was gonna say. Let me do it again. This episode of the podcast is also sponsored by the Contour Next One blood glucose meter. Head over to contour next one.com Ford slash juicebox. To learn more about the most accurate and easy to use blood glucose meter that I've ever held. There. See I got it no problem. There are links in the ship. Boy, I'm a mess this morning here. There are links in the show notes of your podcast player and links at Juicebox Podcast comm to these and all of the sponsors. Please click the links. Alright, here comes Ariana

Arianna 2:28
talk and you talking at the same time?

Scott Benner 2:31
Hold on, you're being recorded now. So you know okay. It's weird. Okay. It's Oh, it's weird. Just not hearing just my voice.

Arianna 2:38
Yeah, I've seen pictures of you and heard your voice but not together at

Scott Benner 2:43
the same time. I have to admit, I don't normally look at people while I'm doing this, but I enjoy watching your smile. So Oh, yeah. Like you seem happy at the moment. And yeah, I've deluded myself into believing that's because you and I are meeting and you're happy? Yes. Oh, is that true? Yes. My wife ever hears this. I'm leaving this part in. Okay. So go ahead and introduce yourself.

Arianna 3:08
I'm Arianna. And I'm Dora's mom. She is almost eight, and was diagnosed. A little less than two years ago.

Scott Benner 3:20
Okay. So she was diagnosed when she was six. And I am now under a lot of pressure to remember as much about Dora the Explorer as I can so I can make silly jokes throughout the hour. We'll see what I can. At the moment, all I have is Swiper in the map. So we'll see where I go from there. Okay, she was diagnosed two years ago when she was six. Yes. Okay. Do you have type one? I do not know. Do you have anything celiac? Thyroid?

Arianna 3:50
Nope. Allergies.

Scott Benner 3:52
I have allergy sometimes to How about in your family line? Your mom Grandmother, father?

Arianna 4:01
No. In our family, there's type two, and gestational. And very, very distant. Like, great, great. Great. Great. Great, great aunt had type one.

Scott Benner 4:17
Yeah, that's a that's family line. Alright, and I can't the Dora have a dad. She has a dad. No, not your Dora the one from the cartoon?

Arianna 4:29
I don't know. See.

Scott Benner 4:30
That's what I've been thinking for the last 30 seconds. I'm like,

Arianna 4:34
I know Dora the Explorer. How to Mom. All right. Well,

Scott Benner 4:37
I mean, everybody gets a mom. But I mean, I guess everybody gets it, dad. So hold on a second Dora the Explorer, this assistant father.

Unknown Speaker 4:48
Yeah

Scott Benner 4:54
she does have a father. His name is Cole Marquez. He's the father of Dora. Isabella and a husband of Miami. He and his wife appeared in several episodes of Dora the Explorer. I hope he gets residuals. Okay, I don't think he I can't believe that. Okay. Dora has a father. How about your father? How about your daughter's father? We all together. Yeah. Nice.

Arianna 5:23
Watching them right now inside.

Scott Benner 5:27
Alright, cool. So we have a nice little family unit going on. Are there any other kids?

Arianna 5:34
Yes. A three year old?

Scott Benner 5:36
A three year olds. Oh, wow. Okay, cool. All right. So why did you want to be on the podcast?

Arianna 5:44
I wanted to talk about the struggles of the caretaker, with their own mental health and how it impacts the management of the child's diabetes.

Scott Benner 5:59
Okay. Is this something you're just wildly concerned about? For other people or something you're going through?

Arianna 6:06
Something having gone through?

Scott Benner 6:08
Let's start at the beginning then which is the best place to start. When Dora's diagnosed, can you kind of describe how it made you feel?

Arianna 6:21
A sense of relief?

Scott Benner 6:23
Oh, okay. Well, there was an answer I didn't expect. So she had been sick, I'm guessing and you didn't know what was going on.

Arianna 6:30
She had been having night terrors for about two years. And I'm pretty sure that that was her first symptom. Could they tantrums during out throughout the day, because of a lack of sleep? Right. And, you know, then it progressed. And about nine months before diagnosis, I took her to the pediatrician about her excessive water drinking. And she brushed it off as allergies. Okay, then we moved States

Scott Benner 7:14
took it away from that doctor for other reasons.

Arianna 7:18
For other reasons, um, and when we moved, we unknowingly traveled 16 hours in a car with the type one diabetic. And we had to wait about six weeks to see her pediatrician here. And she was very concerned, she was shocked that the pediatrician before brushed it off and came up with a game plan. And we found out two hours later, four hours later that her blood sugar was 1070.

Scott Benner 8:01
Jesus. That's insane. And that was the beginning. Well, let me go back for a little bit. Next question then. So dealing with night terrors for a long time with a young child. I mean, even if that's the only thing that ever happened. That seems like a lot. That's not something. Yeah, like when you're like, 1820 25 like you don't want me to get married and have a kid like you never think it'll wake up in the middle night screaming like someone's trying to murder it. So she was there. She wasn't she just seemed gone. Yeah. Alright. Okay. And so do you? Do you? Are you supposed to wake them up? Like, what's the process.

Arianna 8:43
Night terrors are similar to like night walking, or sleepwalking? Where you don't really want to wake them up because they're not awake. So basically, we tried everything not to get too deep into that still processing all of that and therapy. But it was tough, cuz some of the time I was pregnant, and then had a newborn and my husband was working nights. So it was not a fun situation. It definitely played a factor in my mental health.

Scott Benner 9:21
Okay, so that so let me let me ask you prior to this, did you have any issues with your mental health prior to that?

Arianna 9:29
Um, yes, but nothing to where I needed to seek help.

Scott Benner 9:37
Okay, so what I felt you felt okay. Can you give me like a brief like high level overview of how you felt prior to that, like what are the some of the things you were struggling

Arianna 9:47
with? Oh, um, some of its personal don't, but some of it was very last down. I was not present in my body. For context, my diagnosis is PTSD with depressive mood and anxiety. Okay. So some PTSD from a personal experience when his daughter was really when door was really little. That got suppressed a little bit. And then as the night terrors continued, it exacerbated everything, to say the least.

Scott Benner 10:37
Alright, so I'm very interested, but I think us having our video on is messing up our signal. Can you shut yours off? I'm sorry. Yeah, but let's see if that if that helps a little bit. So, okay, so you had something going on, we're not going to dig into. And it was, you know, it was there, and you were managing. And then you have a new baby, only a few years old, and she's having night terrors. And then that sort of just pushes you a little farther, I guess. Yes. Okay. And then it pushed you have much farther? Yes. Do you have context for why? Meaning? Was it the concern for her? Was it the adrenaline from someone screaming in the middle of the night? Like, was it the wonder of is, when is this going to happen? Like, what about it? Do you know?

Arianna 11:29
I'm, I'm sure lack of sleep played a huge factor. Because at the end, so in the last six months of her night tears before diagnosis, it was guaranteed she would have at least one that would last at least 30 minutes in the middle of the night. But then they continued. And sometimes it was two or three times in the middle of the night. Mind you. I had a new one. Oh, wow.

Scott Benner 12:00
So it kind of mimic the unpredictable scheduling. Some people will talk about low blood sugars, like get a low blood sugar overnight, you fix it, you think, Oh, this is it. And then 20 minutes later, it's low again. And like that, and so there was never the idea that a you were safe to go to sleep or be that even if you fix the problem, that it was gonna stay fixed.

Arianna 12:22
There was no fixing, and I had no one to help. She just lived through

Scott Benner 12:25
it. Yeah. Oh, so it's a process. So it's a problem. Additionally, that there's no fix for it. So there's just Wallaces happening. You just hold her or what do you do? Are they violent?

Arianna 12:44
I don't remember much of her night terrors other than they were horrifying. To have to not see your child in your child is an experience that's

Scott Benner 13:00
interesting. So she's like a zombie. And there's no connection to the kind of vessel you see in front of you in the person, you know?

Arianna 13:07
Yes. And her lack of sleep affected her daytime mood. Yeah. So it was a never ending cycle.

Scott Benner 13:17
And then are you saying that she goes on insulin and night terror stop? And that's that?

Arianna 13:21
Pretty much?

Scott Benner 13:24
Huh? Did a doctor offer you any explanation for that?

Arianna 13:30
Um, one of the diabetes educators in the hospital said she probably was type one for a while because of how high her agency was, and that it's not uncommon if you're sleeping and have high blood sugars to have wacky dreams or have nightmares. Okay. So, in my belief, and knowing my child, I'm 100% positive of the night tears were a result of high blood sugars.

Scott Benner 14:11
And they have stopped.

Arianna 14:13
Um, I think we had five diagnosis. And that was in the first two months after diagnosis.

Scott Benner 14:29
So in the last 18 months, you haven't seen one? No, oh, wow. Well, then let's hope that that was not. Yeah, but that's crazy, isn't it? Yes. So you, you move, luckily, and get to a doctor that understands that, you know, extreme thirst and small children's not to be ignored. You get your diagnosis. Did when the night terrors stopped? Did you go huh? Like is that The first time you saw the connection between that and diabetes like I imagine she wasn't diagnosed with diabetes, and you were just like, well Torres diabetes. I imagine these night terrors are gonna stop now that we give her insulin. Like I bet you you were surprised when they stopped.

Arianna 15:13
I'm sorry, I'm thinking Don't Don't

Scott Benner 15:19
be sorry. dramatic pauses are great. People aren't sure if you're crying. Oh, I wonder if she's upset? Do you think he made her upset with a stupid questions? People are not upset.

Arianna 15:34
I think I was more surprised at the light that returned in her eyes that had been missing. When she had been on insulin for 12 hours. It's quick. And then I knew like she had a massive night tear in the hospital that kind of scared some of the teaching doctors had X ray her foot. I won't go into details. Um, but I knew she had returned.

Scott Benner 16:08
That insulin hits her and you just sort of see the life come back and the person you know, in their face and everything is there all of a sudden?

Arianna 16:15
Yeah, took a while, you know, but I saw signs that she was back. And I knew and I knew in that moment that things were were better. There was a answer to the night tears. There was an answer to the mood there was I was gonna get my child back.

Scott Benner 16:35
Does that relief? lessen your burden?

Arianna 16:42
Um, I mean, it creates a new burden of caretaking.

Scott Benner 16:47
Well, yeah, no. Well, that's what I'm saying. That's what I was getting to, is it you you went from like, these night terrors, and this worry and, and the struggle of dealing with them and the endlessness of it too well, the night terror stuff put, we switched it for diabetes. And I was wondering if at least that felt my guess then it wouldn't have felt manageable in the beginning. It never feels manageable.

Arianna 17:11
Um, you know, I, some of the parents on your podcast, I've heard them be devastated. After diagnosis, I do not have that. I had, like I said, sense of relief. I had hope that was gone for a while. And while managing diabetes is not fun, or easy. It it was healing in a way. And it was a relief. And it I knew that my daughter was okay.

Scott Benner 17:57
Okay. I think having answers is an incredible relief. And even if the answer is, you know, you have to use insulin now. And there's parts of your pancreas that aren't working so great, etc. At least it's an answer, because the the not knowing to me is maybe just as bad as the knowing, you know, like, at least we know, you can do something. Yeah, yeah. All right. I believe in that. Okay, so what was management? Like in the beginning? I mean, what what did they teach in the hospital? And what was it like when you got home?

Arianna 18:33
Oh, um, you know, pretty much the standard of don't die rules for sure. I was actually lucky that one of the, actually, one of the diabetes educators in the hospital was type one. And the other had children that were type one. So they were living in it. And I didn't get the 1515 rule. I got the 10 grams of carbs for 15 minutes. Rule. So not as bad I couldn't imagine if we did 15 But she at least had the hay Dora's kind of small. We don't need 15 would probably be too many carbs for her. But other than that, you know, checking in. Oh, 274 Right now she's a month into diagnosis. That's fine. We're okay with that sort of thing.

Scott Benner 19:39
How much does she weigh when she was diagnosed about

Arianna 19:42
like 4849 pounds?

Scott Benner 19:46
Does she put any weight on afterwards? Haha, yes. Right. Because she it seems like she had it for a while.

Arianna 19:54
Yes. Um, yeah, she's she's a solid now.

Scott Benner 20:01
Oh, well, that's great. Hey, listen, I have a weird question that you might not know how to answer. If she didn't have night terrors. Was there other indicators about her behavior that would have led you to believe something was wrong?

Arianna 20:16
Yes. Can when I realized that it was really wrong, we were in the process of moving. So, and I obviously didn't trust her pediatrician. So what was I going to do? Um, yes, her obsession with water was so bad. It was traumatizing. Her obsession with food. Like she ate as much as a 300 pound football player would eat. Um, he didn't necessarily

Scott Benner 20:55
I'm sorry that that flourishes eating was that at the end before diagnosis or Had that been going on for a while.

Arianna 21:04
It increased over time. And I just thought it was a growth spurt for a while. And then it continued in three full breakfast, and then a snack and then two lunches and snacks. And like three servings of dinner is ridiculous.

Scott Benner 21:23
Yeah, there's a physiological reason for that. Arden, at the very end was like, could barely move. She was just she was a husk of a person. But still, if you put food in her, she ate like, shit, like a little kid you find in the woods in a science fiction movie. You know what I mean? Like that, like she's been gone for three months. And here they put food in front of you sit there and just like, pushes it towards her face. Arda was eating like that at the end and would explode. Yeah. With your and not passing bowel movements, or Yes.

Arianna 21:58
Oh, yeah, fine. Totally. I

Scott Benner 22:00
was fine.

Arianna 22:01
The thing. The thing that changed like was her body. She didn't really lose weight, because she was eating all the time. She was full of food. But she got incredibly skinny, but had like a pregnant belly.

Scott Benner 22:16
Interesting. At the, the handful of days before Arden's diagnosis, she was still in a diaper. And her bowel movements were hard. They were crushable like you, you could pinch them and they would break apart like, like a dirt ball that baked in the sun. It was yeah, she could barely get them out. Just really, I don't know I enjoying. I'm oddly enjoying talking through this with you. Because I am assuming it's in the last two years now that you know more dawned on you that she was really on the edge of death your daughter?

Arianna 22:52
Yeah, she um, yeah, there was some some real stuff going on that was extended, but, you know, health care providers that actually listen to you. Big deal, um, is incredibly important. And I'm so thankful for her pediatrician. And the fact that we moved and thank goodness nothing happened. I mean, feeding a diet unknown diabetic. pancakes and syrup while in the car, like it could have been disastrous.

Scott Benner 23:23
Yeah, you were close. You really were I wonder how long it was like that. But I mean,

Arianna 23:28
and she was the craziest thing she was only mild DKA

Scott Benner 23:33
Yeah. Well, it's interesting if her body was kicking back in once in a while and fixing that blood sugar and then driving it way up again and then you know, you could see why our by our system was all messed up and were those night terrors and everything. Okay, totally

Arianna 23:49
look back and have answers and go oh, yeah, she was eating because she was starving to death but and just the energy was so low. I'm like you don't go to a brand new park and then just sit on the grass. So there were things that were for sure going going on. But

Scott Benner 24:14
we stood in front of the ocean and she did not appear to know it was there I remember that I remember putting her down on the beach and she didn't have any reaction to that at all. She just scary stood perfectly still. Yeah it's interesting in hindsight, right? Where you can go back and figure out afterwards you know, like after like your, you know, your your spouse of 20 years cheats on you. You start going Oh, nobody gets fro yo every night it's seven o'clock. I should have figured that out. You know, there's there's the things that looks super obvious afterwards that during their during it, you just don't say, you know, totally,

Arianna 24:51
and we were living with my mom. Before we left willingly. Everybody thinks it's odd and I don't know In she's a retired nurse from the ER, and she was like there's something off. But like, I don't really know, like it was clear as day in our eyes. But like, she wasn't necessarily like dying. So was I really going to take her the ER, like I didn't with a newborn, I was highly confused. And then we moved in three weeks. So then it threw everything off.

Scott Benner 25:29
So are you younger, too?

Arianna 25:32
I'm almost 32.

Scott Benner 25:33
So you just look really? Alright, nevermind.

Arianna 25:36
Yes, I do. Like you.

Scott Benner 25:37
If you told me like, if you told me you had her when you were 12? I'd be like, Yeah, I believe that. Because you, you look very young. So I get that all the time. Yeah, I just wanted to be certain because that could be a contributing factor. If you are a really young mother, it's easy to not be as thoughtful about stuff like that, you know,

Arianna 25:58
I was very in tune with her. It's just you have a doctor that doesn't listen. And then you don't trust that doctor? And then what do you do? Like I don't? What was I supposed to? Like? I really don't know what I was supposed to do other than nobody wanted to take our insurance at the time. And I had a newborn like, we're planning on moving like, at a certain point. It's just kind of like, well, we'll get a doctor when we get there.

Scott Benner 26:29
You needed somebody in that moment to step forward and say, Hey, I see there's a real problem here. We're not coming to a resolution. I'm going to help you figure out what this is not put it on you to do the exact right thing with the exact right person that I think that happens with a lot of health care. Yeah, I don't I don't think it's I don't even know that it's anybody's fault. But it's just that if you don't, if you don't ask the right questions, and have the right things occur to you, and how are you really in control of that? Then you don't even know the right questions to ask to spark an idea in a doctor's head. And, you know, I've just learned over the years that there have been as many issues resolved in my family medically from us figuring it out. Yeah, maybe even more so than from a doctor figuring it out. Oh, yeah. Yeah. So.

Arianna 27:26
And then, honestly, it was lack of her pediatrician. Because so we had one appointment. I can't remember if it was November or December before her diagnosis, where she goes, it's just allergies, come back in a month, came back in a month. It wasn't getting any better. I stopped counting how much water she was drinking at 100 ounces. And that wasn't even the whole day. Yeah. So

Scott Benner 27:54
Well, here's the truth. But it's, it'll seem a little disconnected. But my son was given a steroid pack for something. And he was told, like, in a week, this will be better. Well, three days later, it was worse, not better. And I drug his as right back to the doctor's office. I was like, This isn't working. And I think most people would have just waited the four days. I just I don't I've just been through this one too many times. Do you know what I mean? There's Yes, once common sense, but you don't. But I'm not judging you either. for not doing that. I'm just saying that. It's it's uncommon for somebody to do what I did, and more common for someone to do what you did. And the

Arianna 28:33
only reason why I waited was because Oh, and she had said give her Claritin, I stopped after two weeks. I was like, this isn't allergies. I'm not giving her clarity and just to give her clarity. I have allergies. I've lived with them my whole life. I know what allergies are. It's not allergies,

Scott Benner 28:51
and excessive. Excessive thirst got you told Claritin for four year old five year old. Yes. Wow. Was it really a doctor? Did you meet this person at a strip mall by any chance?

Arianna 29:06
Um, no, she was her doctor from birth? Yeah.

Scott Benner 29:09
Geez. Well, hopefully it's really you're good.

Arianna 29:13
I'm just I had issues with this doctor. I took her. For example, I took her when she was little for a diaper rash that I was 100%. Certain that was thrush. On the Friday. She said it's not thrush. Fine. Then I went home. We spent the weekend it continued to get worse. If you let diaper rash thrush get worse. It starts to bleed. Let's just say that next Monday. I took her back to the same doctor. And she was like, oh, yeah, it's thrush.

Scott Benner 29:48
She figured it out. I told you that don't get sick on Fridays. That's a bad idea. You get I mean,

Arianna 29:55
like yeah, just imagine any issues.

Scott Benner 30:00
At three o'clock in the afternoon on a Friday, I come to you with a big problem. You'd be like, Oh, I'm so close to the weekend. Are you sure you can just wait three days for?

Arianna 30:10
The same thing happened with my second daughter? She told me it wasn't. I was like, it's thrush. Please just give it its thrush. Stop. That's interesting. So we already had issues with her. But there was the type of insurance we had we are lower income. Nobody was taking new patients with our insurance, so there was pretty much nowhere to go. So I just said, fine. It's allergies. I know it's not allergies. But whatever we'll try. It waited two weeks. Claritin did nothing. So I stopped. And then I decided to monitor and her water intake and stopped counting because I got to 100 and was done. Hey, we are back.

Scott Benner 30:59
I want to ask you a question. When you said we couldn't able to take our insurance. We're lower income is the inference that when you don't have a fancy insurance policy to throw around or money to pay, co pays or or you know, a doctor cash if you have to? If you can't get help, then you're I'm asking I don't know. Like, do you get less qualified doctors? Yes. So you get like the ones that couldn't get a job where they do take insurance and they can charge you more money, etc.

Arianna 31:36
I mean, they're definitely they have too many patients. Um, and you're kind of stuck, because the amount of paperwork that they have to do is more than they want to do. And more than they get paid to do. I do feel bad for them. Don't get me wrong, they have a lot to do. And pediatricians have child's lives in their hands. And they have to also deal with the parents too. So I do have an understanding. But it it wasn't just them. It was also me too. You shouldn't have to go to the ER and see your doctor six times before getting a referral to an OB for an ovarian cyst. So it's not just that, yeah, it's not. And it's also the area we were in, right? overpopulated makes a difference to Yeah, where where we're at now. Oh, we have absolutely amazing doctors, and the same type of insurance. And I, I wouldn't change it for the

Scott Benner 32:41
world. Okay, that's interesting, because that's what I was trying to figure out. And I'm not I'm not generally saying that, you know, it's not like the chef at John George doesn't work at McDonald's. I'm not saying that. I'm just saying that, you know, you start getting people with fewer job opportunities. And then you get and then you put them into it's not it's not a condemnation of the person. It's more of the system and just the I'm trying to look at it the way it works. Not for sure. Yeah, you know what I mean? Like there's just the way the mechanism works. So yeah, you know, if you're in that scenario is yeah, it's it's an unfortunate scenario, it really is. So, but now, having gone through all of that, you're also still you and you still have the issues that you're dealing with. So are you seeking out like therapy mental health like through this entire thing. G voc hypo pan has no visible needle, and it's the first premixed auto injector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is G voc hypo pen simple to administer, but it's simple to learn more about, all you have to do is go to G voc glucagon.com. Ford slash juicebox. G evoke shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G Vogue. glucagon.com/brisk. Just going to remind you here again, T one D exchange.org. Forward slash juicebox. Take the survey if you're a US resident. I just saw it again online the other day, someone put up a photo of their meter and their Dexcom. Why does this Dexcom not work? Look, my meter says this and Dexcom says that while they're holding up a brand new Dexcom, right, that's the latest and greatest technology that they have. And they're holding up a meter that looks like it's 35 years old and has been hit by four different cars. And for some reason they think the meter must be right. Well, I get that idea. And meters are amazing and everyone should have one but you can't use a junky one and then expect it to give you good results. Instead, you should find an accurate meter, something that is cutting edge, like the Contour. Next One, the Contour. Next One blood glucose meter has Second Chance test strips, which means if you touch the blood and don't get enough, that's no big deal, you just go back and get the rest, not to say that it needs a lot of blood, it doesn't. But I'm just saying, you know, sometimes you mess up. And you don't want to have to waste the test trip or have to wonder if the test result is inaccurate, because you've put on some blood and then come back and put on more Second Chance test trips. The Contour Next One is also easy to hold. And it's easy to transport in your purse or your pocket or wherever you keep your diabetes gear. It has an incredibly bright light for dark times, you know, not like dark times, like what was me, I can't get out of this funk. But when the lights are off, and there's no sun dark times, I guess I should have said at night. It's too late now. And it has an amazing app, if you want to use it, it'll sync to your Android or iPhone. Now if you want more data, right to track, it has that. But if you don't want to use the app, it doesn't matter, you can just use the meter by itself. And it's wonderful. It is literally the easiest to hold, most accurate meter that I've ever used with my daughter. Contour next one.com forward slash juicebox. On top of all that it's a really comprehensive website, website. Did I say website the first time, it's a really comprehensive website, that will explain everything you need to know. And you can even see other meters that they have there. In fact, there's a test strip savings program, you could look into some people are eligible to get the meter for free and the meter doesn't really cost very much. Actually, it could cost you less in cash than you're paying for your current meter through your insurance. And that crazy, you might be paying more through your insurance to feed test strips into your old janky meter that doesn't work, then it would cost you just reach in your pocket to buy the Contour. Next One. It's amazing. I mean, I'm not sure if that's going to be the situation for you. But you should go find out contour next one.com forward slash juicebox links in the show notes, links at Juicebox Podcast COMM When you support the sponsors, you're supporting the show.

Arianna 37:19
Yes, slow. On top of the night tears and having two kids, I noticed I needed some help. I was not feeling I was not there. So I'm where we were living before I sought help. And I saw her for maybe six months, maybe a little more. And then we moved on. And I thought I was okay here until I wasn't. And then my doctor was like, I think you should see a therapist. And I said I pretty sure you're right. Um, so I I sought out a therapist, which is a feat in itself. And I found one that I absolutely love who actually gave me a diagnosis. I hadn't had a diagnosis prior, or that I knew up. And I've been seeing her for about six months, and things are so much better.

Scott Benner 38:30
Hey, this is gonna maybe just be 100% Wrong. But have you ever been tested for hypothyroidism? Or Hashimotos?

Arianna 38:39
Um, I had my thyroid tested. Because my cycle decided to disappear. And it came back normal.

Scott Benner 38:52
What came back in range? Or do you know what the number was?

Arianna 38:58
Um, I could probably look through my stuff, but it came back in range.

Scott Benner 39:07
Sorry about that. The reason I ask is because the range for thyroid and this might not be your case, but but lack of energy, depression, hair loss, menstruation changes, all kinds of different things are controlled by your thyroid. And you'll get this test and they'll say oh, it's in range. But there are like ninja level thyroid doctors that will treat your thyroid level if your TST if your TSH is over two and there are plenty people who will come back at four or five and they'll be like, Oh, you're in range, you're fine, but a tiny bit of hot thyroid hormone ends up changing a lot of that stuff for people. So I've known people who and spoken to people who thought they were depressed who I really needed a thyroid medication who, you know, thought they had all other kinds of issues that need a thyroid medication. So like when you go look at that test, if that TSH is over two, it's worth going to a doctor that will treat your symptoms, not just the number. Does that make sense?

Arianna 40:21
I also had whatever the testing is for autoimmune diseases, because of allergies. Um, and because Dora has an autoimmune disease. And it came back negative. So

Scott Benner 40:41
they are the the, the antibody testing, they did that during the thyroid

Arianna 40:47
was separate. But yes, everything. Everything came back. Normal.

Scott Benner 40:54
Okay, yeah, I saw I can be 1,000,000% Wrong. I just get real sad when I know that people miss that. And it's such a simple thing.

Arianna 41:01
Oh, totally. There is some thyroid issue in my family history somewhere. I don't know exactly where but I've been told by my mother. That

Scott Benner 41:12
is, yeah, I would want to know what your test said. It came?

Arianna 41:17
Yeah, things came back in range. And you know, while there's always the possibility of, you know, something like that, I can tell you therapy has completely changed my life.

Scott Benner 41:32
Yeah, I'm not disregarding any of the things that you figured out your mental health at all, I was just saying, like, for everybody listening on top of you, like, you have to understand that when I'm doing this with you, I'm also trying to think of what the people listening are thinking about too. So of course, I'm doing a little of both talking to everybody. And just you at the same time, I tricked them. By talking to you, do you see what I'm saying. But I'm talking to the rest of you, unless you're hearing my voice in your head when you don't have your earphones on. And that in that case, that's not real. And you should see. And for all of you ladies that are talking lately about on popping up in your dreams, it's weird, but keep telling me, it's also under, thank you very much. Okay, so you're, you're getting better. And at the same time, you're figuring things out for your daughter. But to go back to what your email said about how the diabetes impacted your mental health. Is there anything you want people to know? Is there something you wish you had known? What did you figure out? And then I want to ask you some stuff about type one.

Arianna 42:41
I think I figured out that it's okay to let go a little bit. Because, because it's okay to let them be a kid. It's okay to focus on yourself. It's okay to not have perfect graphs, it's okay to continue to put in the effort. And all that it takes to learn and manage type one with a growing child. But it's also okay to take a step back and realize

Scott Benner 43:22
you don't have to get it all right on the first day.

Arianna 43:26
Well, even over time, I worked really, really, really hard in the beginning, I studied her graphs I headed down and then we got the pump to swim. Yeah. Things change, it's a totally different world and realizing, okay, you have to go back to basics. You You have to almost relearn diabetes, it's okay if extend Bolus does not work for your child. And it's okay to let go of striving for a number in the fives and a one C in the five, which is incredibly wonderful, but not at your own detriment. If it's hurting your mental health and doing more damage for you than good. It's okay to step back. I'm not saying sitting within a one seeing the 10s is okay. But it's okay to let go of the graph studying it's okay to put your oxygen mask on first and realizing that they're getting insulin that they probably weren't getting before, and that is absolutely better than nothing. And it's okay to step aside and focus on You so that you can be in the best spot possible to teach them how to manage their own diabetes. Okay.

Scott Benner 45:13
I, so there's a tipping point. And if it gets too far one way, then you're no help at all. Yeah, right. Yeah. And so you're trying to keep a balance of your sanity? and general health about type one? Yes, I gotcha. It's easy for the overwhelming nature of learning about type one to consume you. And then yeah, how to get lost.

Arianna 45:45
Yeah, and if you're somebody that has, you know, anxiety, and some of my anxiety has to do with her numbers, I've had to stop looking at her graph as often. Because it was it was taking over, it's, it's okay to, you know, I went from having her alarm at 122, putting out 150 for my own sanity. And that's okay, because we're still catching it early, and readjusting my goals for her, because she's healthy, she's growing. She's learning, she's smart. All of these things. She doesn't have to be perfect. I don't have to get her diabetes, perfect. If it takes, you know, five minutes of showing her because she's younger, how to read the nutrition label on something and judge how much she's eating, and how much insulin she's going to need, along with having her do the math herself. So teaching her those things, and maybe not getting insulin in her five minutes sooner just to do it. That's okay. Because she's learning something out of it. Okay, it doesn't have to.

Scott Benner 47:16
I'm sorry, I cut you off. But it was there. Was there beyond your own motherly instincts and your desire to do well for Dora? It? Was there anything that made you feel like everything had to be perfect? Like, why did everything? Do you have a knot? Why, like, tell me why? Because you're wrong. And you know, but do you? Can you imagine what the influences were? That made that feel like the most important thing in the world?

Arianna 47:46
Yes, because when she has high blood sugar for too long, I can see the child pre diagnosis. Okay. The mood changes. I was worried about night terrors. I was worried about the tantrums that happened I was worried about she fights with her sister more when her blood sugar is higher. So I was concerned about keeping my child that I got back.

Scott Benner 48:20
So where are we? How long did it take you to figure out that you couldn't do that?

Arianna 48:29
Um, a little over a year.

Scott Benner 48:33
Okay. And where's her a onesie at now? For example.

Arianna 48:39
I have no idea. We haven't had it. The last time we had it. It was a 5.7. And I felt which was great. And wonderful. And I cried, and I remember hearing your voice in my head, saying, This is what it feels like to you know, you're like, Hey, keep doing what you're doing. Like, see you next time.

Scott Benner 49:04
Yeah, like, it's just gonna stay here and you're just gonna keep it so. So are you tracking are on any kind of app right now? Like, since you've kind of made this adjustment to not being so closely guarded about stuff? Do you know? Do you know? I mean, can you guess where it is? Like through Do you have Dexcom? Like through clarity or sugar majors? Yeah. And I don't look at it. Okay.

Arianna 49:29
Um, I think a lot I mean, I look at it every once in a while just to see where she's at. But she's probably under 6.5. Like, I want to say on average, her blood sugar's around 120 Like an average for the day. But I I manage as we go, and I try not to look at I try not to Look at it so much, because I try not to keep her in the two hundreds. So I know, I know that she's okay. I know that, you know, above 140s, you know, there can be long term damage and yada yada. But I know that on average, you know, I do have my goals, I'd prefer her to be under 100 When she wakes up, I'd, you know, I look to make sure how stable her line was, if it was 150 all night, and stable. I'm cool with it. I'm not gonna like, I can't lose the sleep over it anymore. I can't hurt myself over it anymore. while still being safe. And acknowledging what's happening. I still try to catch the highs. Like I still, I still try to catch the lows, but I'm not so Dare I say obsessive over it?

Scott Benner 51:03
Do you think that they'll be enough time that can pass where your growth and understanding of how to do things in general will just lead to lower stability without trying?

Arianna 51:17
Oh, I've done it for sure. There's been days where I'm like, her blood sugar was around 100 all day, and I barely thought about diabetes. And it was super easy. So there's totally been days like that. But I think for my mental health right now and the things that I'm processing in therapy, that I I need to stay here for a moment. Need to continue to process you know the time in my life when she was having night terrors and how that affected me and I have more processing that I I have to do, but I will come back to it. Like I still every once in a while maybe like once a month I come back to Okay, let's reevaluate what's been going on like her her Basal rate at this time probably needs to be adjusted or you know, but I do give myself some more leeway, but she's not. And I think because I worked so hard in the beginning and got her a one C down to a diagnosis, she was 17.6 to a 5.7 in just over a year. Well, I think I gave myself some leeway to cut can I give us grace? Can

Scott Benner 52:45
I ask a question? If like this is hard to imagine, cuz I'm gonna make you make something up. But if whatever happened to you personally, the gave you the issues you have and the PTSD and all that stuff. If that did not happen in your life, do you think the diabetes stuff would have been less overwhelming?

Arianna 53:06
It probably would have been more how so? Um, I've learned far too much about myself through processing all of my traumas, and kind of what makes me tick. To to know that this is this is just something if I hadn't dealt with those things and learned what I've learned. It would have been harder.

Scott Benner 53:48
Are you saying that your trauma drove you to learn more about yourself which create a betterment that would not have existed without the trauma you wouldn't have gone and looking for that Betterment without it? Yes. Okay. So you have a better clearer understanding of who you are and why you do what you do. But you still have the residual effect of the actual thing that happened to you. Yes, okay.

Arianna 54:13
I, I have an understanding of what makes me tick, I have more understanding of coping mechanisms, and my communication skills have gotten so much better. And it's just made me that much stronger. Mentally. Then, like, I probably would, I probably would have had the same feelings that some of the other parents have just devastated and wishing for the normal. And, you know, just that loss that happens. Don't get me wrong. I grieved some of those things too. But going through what I've gone through, gave me this fire, this determination and strength within myself that I don't think I had before.

Scott Benner 55:21
Is there a pathway that you're looking for or aware of? Or is your therapist helping you? I mean, I want to ask you, okay, so to boil it down to simple stuff, right? If, if I walk outside and somebody throws a rock at my head, and it hits me in the head, and it causes me damage, and I can do the work to come back from the damage that it's done, but I can't seem to let go of the memory of the rock being thrown at me. So every time I go outside, I have this underlying anxiety. How do we let go of remembering that the rocket thrown at me? Is that possible? Is that are you hopeful about that? Or is that not something you're considering right now.

Arianna 56:09
There's so something I've personally been working on in therapy and what my therapist calls timestamping. So, and I'm no longer living in my trauma, there's a timestamp, that feels like a time that happened. Whereas when you're still in that trauma, it feels like it's still happening, you still like you still feel like you're in it. So some of my trauma has been timestamped, some of the trauma that has come from the night terrors, and all of that prior to diagnosis hasn't fully been time stamped yet. So it's something that I'm working on. I think, once I process some of that, and get some of that time stamped, it'll definitely bring me to a place where I can be more. I don't want to say more active in her diabetes management, because I'm still active. I'm the sole caretaker, I do all of that. All right, where I can come back to it with a more

clear mind a more present mind. So processing it is definitely needed. But I needed to process the other stuff. First.

Scott Benner 57:46
I don't have anxiety. But I know enough people who do and I've spoken to so many people that have that. I understand it, I think enough, you know, but I don't have any, like personal contextualization for the idea that that you always feel at like, I never feel anxious about anything. And so like, you know what I mean, I know, you've probably heard that and you're like, well bottle that because that I would like and so and so I can deal with and I think many people listening to this, who don't have anxiety, who I'm sure feel for you right now, but don't, again, have any context for it. They don't understand like when something goes wrong, I fix it and then I I never think about it again. And I never wonder if it's going to happen again. And that's a I'm realizing talking to you and having talked to other people in the past. What a just a general blessing that is to not have to worry about that. Because otherwise, you just always feel like a saber toothed Tigers gonna jump on your back and rip your head off. And you have that, that that heightened sense of whatever that is inside of your body. So do you take medication for that? Or is it just therapy you're doing?

Arianna 59:00
Oh, yes, I am on daily medication and then I have what's called emergency medication.

Scott Benner 59:08
So something like a panel or something like that if you have an attack, I'm guessing like to say but like in that in that range, like something that like lowers your heart rate and shows you the hell out like a lot of stuff.

Arianna 59:21
Yeah, it definitely brings me down to level two. Yes, so when there's some high stress stuff, I definitely you use that and along with my therapy coping mechanisms. I I try not to take the emergency medicine. Too often I tried to use all my skills and coping mechanisms first, but it's there when I need it.

Scott Benner 59:53
If I said to you, if I said fill in the blanks, my spouse does or doesn't understand my anxiety? Is it something it's difficult to explain to another person even though they're with you?

Arianna 1:00:10
Um,

Scott Benner 1:00:11
do you think the people around you really understand how you feel when this is happening? Or that it's happening constantly?

Arianna 1:00:19
These see you, I think I'm, I mean, I'm kind of, you can see to my face. Yeah. I don't think he knows what it feels like. But he knows what it looks like.

Scott Benner 1:00:35
And then what can he do for you in those moments? Is there anything?

Arianna 1:00:42
I'm currently learning some of that I'm helping, like, for, for some reason, his way of helping is I did the dishes. And I'm like, Cool. I didn't have to do it. It's one less thing that I have to worry about. And so taking some of that does help. But it's always the dishes for him.

Scott Benner 1:01:06
Well, you realize, in a boy's head, they're like, I gotta have sex with you. Like, that's the only thing we really can think of. And so then from there, like, I guess we're do the dishes, like, if that's real? I don't.

Arianna 1:01:17
I got kind of lucky. Well, yes. Those are lots of his thoughts. He's very aware of. Yeah, no, I'm not even touching that subject at the moment.

Scott Benner 1:01:28
I have to tell you, there are a large group of men who are listening right now, in the middle of like, you know, if you if you went down in a plane crash in a cold place, and you'd look like you're gonna die on the side of the mountain, the guy would be like, I don't know if sex would help. But if it would, I'd be willing to do.

Arianna 1:01:43
Yeah. Trust me, like, you'd be like, could

Scott Benner 1:01:48
you make a fire? And you'd be like, alright, but

Arianna 1:01:53
hey, is it like, the kids are asleep, like, what's going on? And I'm like, her blood sugar's at 200. I'm trying to get it down, leave me alone.

Scott Benner 1:02:03
So all of my ideas don't sound relaxing to you. I guess I'll go do the dishes.

Arianna 1:02:09
Like, fine. I mean, they're asleep. I'll play video games. Now. It's whatever, while I'm sitting there, like, will catch that.

Scott Benner 1:02:18
So what you're really saying is it makes sure I'm understanding is that unlike a person who doesn't suffer, the way you do, everything, the idea of everything that needs to be accomplished weighs on you, and ups, your anxiety. And so if someone can just come in and grab one of those packages, and throw it off of you, it's a lessening effect for you. But is there any time when it's gone? Do you ever just think, Oh, well, I'm not upset or worried or concerned about anything? Does that ever happen?

Arianna 1:02:52
Yes, but that is new.

Scott Benner 1:02:55
And that's for the therapy? Yes. What are some of the things that therapist taught you that are helping you?

Arianna 1:03:02
Um,

Scott Benner 1:03:04
please don't tell me you're going out and murdering, like, blunder bridges and stuff like that or something. Right?

Arianna 1:03:11
No, like, I'm

Scott Benner 1:03:12
sacrificing goats now. It's, it's really relaxing.

Arianna 1:03:19
Okay. Know, some of it's just come with processing it. Before. This, the therapist I have now I physically could not talk about some of my traumas. Like, physically, they'd run in my head, I'd say, Okay, I'm going to say it now in my head, and they'd get stuck in my throat. And instead, I would just cry. And I have found words, I found my voice with therapy. So finding my voice. And words for things allowed me to continue to process instead of it just playing in my head and getting stuck in my throat. So talking has helped. Being able to be vocal has helped. And then with that, I've learned I'm not living in it anymore, that I can sit in the present in my body and breathe and know where I am. And not feel like I'm stuck somewhere else. Okay.

Scott Benner 1:04:51
I want to ask you a question that I want to also tell you that you shouldn't feel any pressure to answer but I want to keep it really general but I just feel like you've shared so much valuable stuff here. But we lacked this specific context. So would you say that at some point? So let me just make some guesses out loud? If you want to say yes or no, that'd be great. Or just tell me to stop asking, but someone hurt you at some point. Is that right? Like it was No, it wasn't a person. Okay? Was it a physical or emotional injury?

Arianna 1:05:29
Um, oh,

Scott Benner 1:05:31
both. Okay. Something you feel like you had fault in or something, you know, was not from your hand at all.

Arianna 1:05:42
But I had fault. Okay.

Scott Benner 1:05:47
You carry a lot of guilt from it.

Arianna 1:05:52
I wouldn't say guilt, I'd say sadness.

Scott Benner 1:05:55
Okay, like one of those. If I had a time machine, you know, where you'd go back to and what you wouldn't do that kind of stuff.

Arianna 1:06:04
I would probably still make the same choice.

Scott Benner 1:06:07
Interesting. Because at that time, you wouldn't have been able to make a different choice, or because it didn't look like a bad choice in the moment.

Arianna 1:06:15
Logically, my, my brain is very logical, logically, completely right decision. Completely what needed to be done. So that's okay, but doesn't mean it takes away.

Scott Benner 1:06:37
What came. So you did the right thing for the right reason, but the outcome impacts you that right. Yeah. That's interesting. I almost like that. You're not going to tell me what it is.

Arianna 1:06:52
I mean, no, don't tell me. Warning. I can tell you seriously,

Scott Benner 1:06:56
you'll tell me but you won't tell everybody else. Yeah, oh, hell, then we'll get off. And you can totally tell me Yeah, screw the rest. I still gave you a good podcast. And so did she, okay, you can't be mad about that this is private. Well, I'm happy that you feel better, and that your therapy is moving you to this place. I'm happy that the diabetes stuff is manageable, and in a good safe spot, and that you feel like you might go back to it later and tighten it down. When you have the ability to it is super commendable, that you were able to take some time for yourself and some space for yourself. A lot of people struggle to do that. And you figured it out pretty quickly. It sounds like you were pressured into it by your circumstances to some degree, but still a lot of people still don't bend they just go down with the ship. You know, they mean you were like how about if we all stay alive when we figure this out and spread some of this horror out over over time.

Arianna 1:08:00
Not to get too morbid, but it got to a point where I couldn't continue living this way. But there was no choice but for me to continue living because of Dora. So I had to I had to make that choice to you know, put on my big girl pants and put work in it had to be done. I have

Scott Benner 1:08:35
to say that I imagine I could be completely wrong but I imagine that most people live in that general space that things that need to be done feel bigger than what you can accomplish that sometimes they don't feel in any way like a satisfactory lifestyle for you. You know people think oh I wish I was doing this or I wish I didn't have to do that but I do think that most people just do what they need to do. And I wonder if I'm sorry I wonder how much of like more recent society gives people especially in in in places like American other you know you know other countries like that that have the thing excuse me concentrating on the fact that I have to clear my throat instead of talking people that have conference like this you know even you know you the poorest people in America live better than other people in other places in the world right? Like if the idea that everybody can like we raise our kids like you can be president which I guess is not as great as it used to be but you know you can be president you can be the accompany you could be rich, you could be famous, you can be an athlete, we no one ever just like hey, you know what you could do? You could probably manage an Arby's like, you know, we don't talk like that, so expectations are super high for success for money when you're younger, and for happiness to everyone gets promised happiness. And I don't know that that's exactly the way life works. I don't think we all get to run around with our like two and a half kids and a Volvo station wagon and a house it has like, you know, it's got an acre, like I don't think most people have like I don't think that's really how it works out for everybody. My husband's grade he's home by 430 helps with dinner. You know, I wear you know, like it's not it's not Leave It to Beaver, I guess is the way I'm trying to say it. And, and yet people fight against it constantly, and it makes them miserable. The the expectation for perfection makes people miserable. Instead of just going like, this is my life. This isn't so bad. You know what I mean? Like, I'll be happy here.

Arianna 1:10:50
Sitting sitting and gratefulness is is highly important. Yeah. Be grateful for all that you have. I've had this conversation with Dora, where you know, she has days where I hate diabetes is what she says, I wish I didn't have it. Boy, do I wish you to have it. But be grateful for the technology that we have. Be grateful for the type of insulin that we have. Be, you know, just to even say yes, it sucks. I'm not saying that it does it. I'm not saying that's not hard. It's for sure. Not fun. But hey, you have this really cool piece of technology that people like, worked really hard on to make it so that you don't have to have a strict regimen like eating regimen and insulin regimen, where you can pretty much say, hey, I want a piece of candy, and then get the piece of candy.

Scott Benner 1:11:59
Yeah, there's a lot of a lot of perspective that comes with knowing that, you know, prior to 1920 ish, you would just be dead if you had type one diabetes. Like that's, that's not that's 100 years ago, that's a very short amount of time ago. You know, like you just made it like, think about it. If you were diagnosed today, you basically just made it in under the wire. Like it's Yeah, yeah.

Arianna 1:12:19
You know, knowing, hearing, listen to your podcast and hearing the people that have had it for 20 years knowing what the technology was then, even 10 years ago, five years ago. Yeah, but it is when she was diagnosed, I could not be more thankful.

Scott Benner 1:12:37
Right. But being diagnosed in the 60s, the 70s, the 80s in that range. I couldn't, well, all the scary stuff that you still hear today. Those stories come from that time, because that was expectation that you hear people come on here, who are like, I was told I wasn't gonna live to 30. Or, you know, people that come on tell you like, they were told, like, you're not gonna get to have kids, you're not gonna have a life, no one will marry you. Someone was told. Do you know what I mean? Like, that's not that long ago in history, been diagnosed with type one diabetes 3030 years ago, somebody might have told you well, you know, give up on all of your dreams and get your living in now, because this isn't going to last very long. That was

Arianna 1:13:19
the two things I think they said in the hospital was, she can do anything that she wants to do. She just can't join the military. And I was like, that's something. And then two was be a pilot. And they said, Well, that's changing. And it's changed since then. Fine. I mean, it. I highly respect all military. But coming from military, my father was in the military, I am relieved that she can't. So for me personally, I was like, Okay,

Scott Benner 1:13:57
anything. But I understand what you're saying. And I just think it's important, right? It's important. And it's not just important about diabetes, it's important about the rest of your life. I mean, listen, there's reason things are written on coffee mugs, and T shirts. The reasons are, if you would just believe them, your life will get better. You know what I mean? Just be grateful for what you have is a big one. Some people have more, some people have less, you know, it's not about more or less, it's about here, like you just need to be able to look up and go my life's pretty good. This is all right. I wish I had more. I wish I had that. But I don't. These are the things that I have the people I'm around, let me make the best of this. And if this is so bad, then let me find a pathway out best I can. I might not get as far out as I want to, but let me see if I can't keep bettering my situation. Yeah, that is some real comfort in in living that way.

Arianna 1:14:52
And, again, I have that that odd thing with diabetes where I was relieved and I have I have the gratefulness of my child his back that I get to live with every single day.

Scott Benner 1:15:12
Yeah. That's amazing. Okay, I, I gotta wrap this up. I'm running low on time. I apologize. But I'm very happy for everything that's happening for you. So far. I didn't get to ask you, but the podcast has generally been valuable for you.

Arianna 1:15:28
Yes, of course, I'm learning. I go back to the the Pro Series and you know, all of that to go back to basics to go, what am I doing wrong? Because sometimes in the funk of depression and anxiety, I forget things. And I go back and I go, Oh, yeah, I got to start there.

Scott Benner 1:15:55
Well, I know I've said this before. And you might have heard me, but I'm not embarrassed to say there are times where things get upside down here. And I, I stopped myself and think if someone came to me and said this was happening to them. Well, what I tell them? Yeah, and I think that's my version of listening back to episodes. I go, I would say to do this, and this and this. Okay, well, why the hell am I not doing that? And then, yeah. Yeah, I sometimes people say like, what would Scott say? Like, I sit in my house? And I think what would I say?

Arianna 1:16:28
That has to be a weird conversation in your head.

Scott Benner 1:16:30
I gotta be honest with you. One of the creepiest things I've ever done in my life is search for something in my own website. So like, there's like this weird feeling when you're like, oh, I don't know the answer to this. But at some point in my life, I did and I wrote it down. I'm gonna go look, and I'm on my own website, searching it that makes me feel very ridiculous while I'm doing that, like, why can I not remember this? And then there.

Arianna 1:16:54
It also shows how informative your podcast is, because

Scott Benner 1:17:01
well, at the very, at the very least, present Amy really does agree with you know, past me. That's why I joke about Jenny when people are like, I say how great Jenny is, but really, when you listen, Jenny and I agree about a lot of things, if not most things about managing diabetes, so like, do I do I like her or do I think she's smart? Cuz she but I shouldn't cast that aspersion I think Jenny's terrific. I'm just making a joke. But no, it's weird sometimes to have that thought. But I'm glad it helps you and anybody else listening who is valuable, too. I thought this was a terrific conversation. I want to thank you for it and I'm going to hit stop so you can tell me stuff you're not gonna tell other people so hold on was

a huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kibo pen at G Vogue glucagon.com Ford slash juicebox you spell that GVOKEGL You see ag o n.com. Forward slash juicebox. And also like to thank the Contour Next One blood glucose meter for being a longtime sponsor of the show and remind you to go to contour next one.com forward slash juicebox. Are you a US resident? Please take the T one D exchange survey AT T one D exchange.org. Forward slash juicebox.

Thank you so much for listening. I really appreciate your support. I'll be back very soon with another episode of The Juicebox Podcast.


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#573 Adoption and Diabetes

Scott Benner

Abby has two adopted children and an amazing story.

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

+ Click for EPISODE TRANSCRIPT


DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 573 of the Juicebox Podcast.

On today's show, I'll be speaking to the mother of two adopted children, one of whom has type one diabetes. Abby's on the show, specifically now in November because not only is it diabetes Awareness Month, but it's National Adoption Awareness Month as well. And I'm adopted to, so I don't know why that matters. Sorry, I just threw that in. Now I'm feeling stupid for saying it. Let me go to something else. 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. Speaking of diabetes Awareness Month, I'm still trying to get as many people as I can to sign up and take the T one D exchange survey AT T one D exchange.org. Forward slash juicebox. It was my goal to put 1000 people on the survey this month and we're off to a pretty good start, but I definitely need more. So I hope you can help T one D exchange.org. Forward slash juicebox you have to be type one, or the caregiver of a type one and be a US citizen.

This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod dash and the Omni pod promise. Find out right now if you're eligible to get a free 30 day trial of the Omni pod dash at Omni pod.com forward slash juice box. Later I'll tell you more about that free trial and explain with the Omni pod promises. today's podcast is also sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor. You can head there right now to their website dexcom.com forward slash juice box to find out more about the Dexcom G six. Where to get started. Were the same CGM that Arden's been wearing for forever@dexcom.com Ford slash juice box.

Abby 2:18
I'm Abby, my family and I live in the Nashville Tennessee area, you will pick up a southern accent as we were talking, it sneaks out every now and then married for almost 18 years, my husband as a firefighter. So that has an interesting dynamic. We have two kiddos. My oldest is eight and a half. And he has our type one. And our youngest. also has special needs a different sort of special needs. She is seven. So that's my crew.

Scott Benner 2:51
And just so we know like right out the gate. Both the kids are adopted. Yes, they're

Abby 2:55
both internationally adopted. My oldest, Shay is our son. He came home when he was one. We actually got him on the morning of his first birthday. He is Taiwanese native Taiwanese. And then our youngest came home at three and a half. And she is from China.

Scott Benner 3:13
So that's us. Can I ask you what made you adopt?

Abby 3:17
Oh, yeah, that's like a whole separate podcast. We'll make it all part of this one. Yeah, no. So my husband and I had been married for about 10 years, we knew that we wanted children. We also were in alignment, that that wasn't happening, the natural biological way. And we did not want to have any type of like, interventions to make that happen. And so my heart was drawn toward adoption. Really early on. He has his own story. But he would tell you that he had to wrestle with some pride around well, this isn't like the way I thought we were going to start a family and kind of struggled with some maybe ego, even if he was being honest of this isn't what I expected. But obviously came around and we were in agreement that that was what we were going to do to start a family. And yeah, we started on the path of

Scott Benner 4:09
going to adoption, pick through that for a second show. i You don't have to obviously share anything you don't want to share. Why is it hard not to feel like it's your fault when you can't conceive?

Abby 4:20
Oh, that's a great question. Um, I think, you know, we did go through diagnostic testing. And so we did have answers. I do say, I will say this, I think there's something unique and as a female, people automatically assume there's something broken in you as the the woman in terms of like, this is what a female is supposed to be able to do. And I think, yeah, there was a season of life where I felt sort of broken and that and that things weren't functioning as they should be like, if I'm also very honest, this is part of my story. This sounds probably kind of strange, but up until that point in my life if I had wanted something to go a certain way of my life like it had happened, you know, where I went to college, I got my first choice. Like, when I graduated, like what job I wanted, and I, you know, things just sort of always fell into place for me. So just from a personal, honestly, from it shifted my faith pretty substantially in terms of Oh, like, I'm actually not in charge of any of this. And this is I'm not in control, and my life isn't gonna just be plotted out the way that I think it's gonna go. And so that there was a grieving process in that. Yeah, this was supposed to be something that was easy, and it's not for us.

Scott Benner 5:36
How old were you when you started trying?

Abby 5:39
Um, we got married very what we, what we now know, was very young, we didn't think we were young, we were 23 and 24. And so I was just out of grad school. And so we were when we got when we started trying, so I was two, Gosh, 28,

Scott Benner 5:54
I guess, after you started trying, how long before you thought this isn't gonna happen?

Abby 5:59
Um, gosh, so the doctor won't even talk to you about that conversation until you've tried for a year. So for a year, we were sort of in like, No Man's Land of like, okay, is something wrong is something like, are we just slow in this process, like what's happening, and so at the one year mark, when it hadn't happened, that's when we started some diagnostic testing, just to get some answers so that we knew what was going on, and then could make decisions from

Scott Benner 6:27
there about the time you find yourself under the bed with a wrench tightening up all the books. I don't know what's going on, but the bed is falling apart. That's the point at the point where you start thinking like, No, I don't want to have sex again.

Abby 6:45
Trust me, it becomes a job at that point where it's like, yeah, it was, it was, you know, looking back, it was a very challenging season of life. And that's to put it mildly, of course, you know, on this side of it, totally worth all of the difficulty and the, you know, the frustration, and I love that I often say the, the way that I know that part of my life is healed. And that story is because I would not go back and write that story any differently if I could. And for a long time, I didn't believe that was possible.

Scott Benner 7:20
So if I give you a magic wand, and I say, I can make your fertility, no trouble, but you lose the kids you have and you make your own babies, you wouldn't do that.

Abby 7:27
Never, not for absolutely any reason when I ever this is the what was meant to be for us.

Scott Benner 7:35
Can I ask you as an adoptive person myself? How do you talk to your children about them being adopted? Because but first My question is, is even though I imagined physically, they look much different than you? Does that really? I mean, what age does the kid even start noticing that?

Abby 7:54
Yeah, it's interesting, because, you know, that happens differently, honestly, for each kid. And we do have a unique situation where, you know, our children are domestically adopted, they're not Caucasian. So obviously, like, we don't physically have the same characteristics, but the, you know, we did have to go through a lot of kind of parenting prep, you know, to become parents on this path, and which I'm deeply grateful for, you know, you could be resentful and like, Why do I have to do all this, but in reality, what you are taught and trained. It's really, really important. So you learn how do you have these conversations with your children? When is the age that you start having conversation? And so the biggest thing for us is that our children would never ever remember having a conversation about, like, they would never be able to go back and be like, I remember the day I was told that I was adopted. I don't have that, either. Yeah. And so that's an indicator of success. And so I will tell my mom, yeah, we, yeah, I mean, we just named we gave, especially our oldest, we gave him language very, very early on of you know, who birth mom birth father birth family. We talked, we had, you know, books that normalize that, like families all like different, like, it just was a normal conversation. And so the, and we still, to this day, read a lot of books that help both of them understand, like, it's okay, we talked about having both and feelings like, you can feel both happy that this is where you are, and at the same time, deeply sad that you're not in your family of origin that you don't know who they are, you know, we can hold space for both of those things. I'm not saying we do this well, you know, all the time, but we've tried to be very intentional about making space for whatever feelings that they have. Our son is very emotionally mature for an eight and a half year old boy. very in tune with how other people feel how he's feeling. Our youngest one Because of her medical conditions processes things a little bit differently. So she's a little bit blissfully unaware, even though we've had conversations. It's but they're very different between the two of them.

Scott Benner 10:12
Sam, did you? Obviously? Well, not obviously. So your son didn't have type one when you got them? Correct. Okay. Did you get going for your second? Were you purposely looking to help a child with special needs?

Abby 10:26
No, not intentionally. So we felt very strongly that so I mean, a lot of people don't know this, when you adopt part of the paperwork, especially for international adoption is you have like a medical questionnaire that you fill out of what types of medical conditions and are comfortable parenting. And this is like this massive list, and you literally have to check off boxes of when I when I accepted child that had this not this. We, my husband felt very strongly, you know, this is not a puppy, right? Like, you're not selectively choosing things. And we also felt like if we had had children biologically, like you don't, you don't do that, right, like you, this is your child, and whenever that child has his, you manage it, in whatever situation. So, um, there might have been maybe two things that we said that we did not feel equipped. And it was more about, like how our home is set up. Like we have stairs, if you have a children that a child that's in a wheelchair, like obviously, like you're going to have to sell your home and find something that's a little bit more accommodating. So minus like very one or two conditions. We were open to anything. Um, when we got matched with our daughter, she was not known to have any special needs. We knew she was at risk for something, but in so she could get stateside and get an MRI that could not be confirmed. But the third day we were in China, she had a seizure on us. And we very quickly realized that she did have it's called sturge Weber syndrome. It's similar to epilepsy, but a little bit more complicated. And our son was with us on that trip. And at that time, he was undiagnosed type one.

Scott Benner 12:11
Okay. Can I ask an honest question? Sure. You're in China, that happens. Is there any part of you that's like, just back up and leave?

Abby 12:22
Oh, so I do not say this, like flippantly at all that experience, there was 100% trauma experience, like hands down, it was trauma experience for us. And for for both kids, it was probably, up until this point in my life, maybe the worst thing of one of the worst things that I've ever lived through was that experience. Um, I remember when we went to the emergency room, we were with our translator, the first and this is things we take for granted in the United States, like walking into an emergency room and being treated and the first er, we walked in, they were like, we can't help you because she's a child. And we only treat adults, so like you need to leave. And so we like get back in the van and like drop to another emergency room that would see children. It's utter chaos. There's no order, there's no organization. And there was a, you know, we had a CT scan, they literally Googled her syndrome, printed off the information and handed it to us and said through the translator, we've never treated a child that has this. You just need to go back to your hotel room like we cannot help you. We don't know what to tell you. And we got got back to our hotel room. This was again, we'd been there for four days, and we still had 10 days left in China before we could come home. It's a very regimented process. You don't just go at your own pace. And I remember sitting in the floor of the hotel room is she she appeared as if she'd had a stroke. I mean, that's what had happened. We later found out it something called Todd's paralysis. It's like a temporary paralysis that can happen. But we didn't know that. And I remember just this utter overwhelm of we flew over here with like a healthy child. And you know, we knew this was going to be tough, but all of a sudden, like is she going to be permanently disabled? Like is she going to recover like we have we're here restrained and it was Yeah, overwhelming would be an understatement. At least

Scott Benner 14:41
I know the intention is to adopt a baby but your entire lead up to that is not expecting anything like this. It feels like it would be like if I took you into a hospital and just said okay that person's troubles are your troubles now.

Abby 14:54
Yeah, just because you know, they say you know in adoption into unique because you You know, biological parents, the bond is instant, right? Because that child was grown, you know, in a in your womb, and when it's delivered like that bond, it's instantaneous. And in adoption, it's okay. To name that that bond isn't instantaneous and, and especially for our daughter, we, I remember we talked about this and this is true for for Shay as well, our oldest, like we had loved them from afar while we were waiting, but like when we got there and got her and in her instance, like we were complete strangers to her. Yeah, so like, she did not love as she did not even know us. And so, yeah, it's, um, love is an is a choice in that moment, right? It's not like it's not a feeling it's a decision that she is mine. And even if those like feelings, aren't they, I mean, and also she was three and a half, you know that it's, it's different than a newborn. And so, so you're very unique process. So

Scott Benner 16:02
even though it's not instantaneous, you have to make the decision in that moment, that this isn't, this isn't a transactional thing. No. I'm gonna She's mine. Yeah, this is my child. I love this child. And let's figure out what to do next.

Abby 16:17
Absolutely. I mean, you go, I mean, you do go into 100%. Like Mama Bear mode in a moment. You're so overwhelmed. But it's also like, this is my child. So now we got to get it, we got to get to work, we got to figure out

Scott Benner 16:31
so even though you haven't given birth, you have that it's so funny that you're on today. Last night, I was in the in the house with Arden and a number of her friends. And in the course of some conversation, one of her friends was saying, I don't know that they didn't think they were gonna have kids or something. And I said, I there has to be a switch somewhere on the way out when the baby comes by and like, flips it. I was like, because you'll just, you'll be surprised at what a different person you are after you're a mom, but you have the same exact experience.

Abby 17:00
Oh, without question. Now, of course, I can't. You know, I don't have children biologically. But I would argue extensively that my feelings toward my children are 1,000% the same. They are they are mine. And that those maternal instincts, they are they're just as present and known as if I had carried them. Yeah, it's, it's really amazing how that works. And now some of that takes grows, right? Because again, it's not a I didn't have them for nine months and carry them in that sense. And so

Scott Benner 17:41
I guess you're lacking all the hormone to that you have during pregnancy lately, right? Yeah. Well, I can tell you, I have two younger brothers that are biological to my, to my parents. And I never once felt like my mom treated me any differently than the way I couldn't sense it. If she was doing it. She was hiding it really well. That she wasn't. So all of this happens. Yes. And I love making this podcast, I just realized, while you were talking, I was like this podcast thing. In general, it's like maybe the greatest thing I'm ever gonna do. So at what point the shake, get type one.

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And what age

Abby 22:24
so we came home from China. That was September of 2018. So we get home and you know if I'm honest, like life isn't awesome. You know, that's kind of common. She again, she was medically complicated. You know, we work we're very pro therapy in this household. And we have a counselor that we work with. And she has sort of laughed and said that we live the trauma trifecta, which is my husband comes from a kind of a childhood that had trauma, he is exposed to a job where every third day for 24 hours. He's in trauma environment as a firefighter, and then we're raising children that come from a trauma environment. And so you know, that isn't always fun. And so that first year we were home was really, really tough. And you know, again for Shay, imagine like you get a sibling overnight, that's three and a half. And she's getting a lot of attention because she's medically needy and complex. And we were you know, ambulance at the house overnight stays in the hospital, you know, Mrs. Appointments, lots of you know stuff, and she was getting a lot of attention. And so behavioral was like he struggled in that year we were home, we all were struggling to just sort of stay afloat. So, in retrospect, I can look back and see some of his behavior issues. I do think were related to the fact that his blood sugar was probably off the charts. And what I can now see in him like when he's high, it's that like massive irritability and you know, like explosiveness, sometimes I can see that. And so I can look back in that lens. And probably guess that some of that was his blood sugar, you know, making it worse because we didn't know that that was going on. But there was just some things that started to emerge, that we started to put the pieces together that something else might be going on. And so Sophie, you came home in September of 2018. And he was diagnosed November 8 of 2019.

Scott Benner 24:45
So just did you just go into a room for a half a second and be like, Oh, come on.

Abby 24:51
No, I can tell you where I was sitting. I was and we came home from the hospital and I was sitting on the edge of the bathtub. Just weeping and feeling like, wow, like, I am not equipped for this journey. You know what I mean? Like that. And also if I'm just very honest. Like, again, from a faith perspective, like really god like, what, what else have you got for me? Because this this is a lot. I'm not sure I'm capable of walking this road. I mean, I really had that feeling.

Scott Benner 25:29
Are you even 30 years old at that point?

Abby 25:32
I was actually I'm much older than I'm right now. Almost 42. So

Scott Benner 25:39
you're like, you're 12?

Abby 25:42
I'll take that. Thank you. No, I feel like I trust me since November 8 of 2019. I feel like I've aged significantly, but no, I'll be I was, I guess, yeah, I was 40. I just turned 40 A month before when he was diagnosed.

Scott Benner 25:55
It's telling because, you know, people who are younger than that, who don't feel like they have things together, probably the back of the hair like, oh, I have to have it together. By the time I'm 40. Right. And I was already there. So I share on the podcast pretty freely that I don't think I was even like, the person I am right now as far as like, thoughtful. You've just over the last couple of years. I just feel like, I'm a guy. But like, as my I get older, my testosterone dwindles a little bit. I can focus a little more on other stuff. But it is like, you don't know what it's like to be a man. It's, it's like a med tear to see. Yeah. Yeah. You know, like, it's hard. Like, it really gets a hold of you. So

Abby 26:37
yeah, well, and it's interesting. I think that's one thing that made, you know, again, when when you when your family gets a type one diagnosis, and I do feel like, you know, the family honestly gets the diagnosis, because it has a ripple effect, as you know very well. And where, and this, again, is part of our story that we try to share openly and honestly is like, yeah, it will, it will take your marriage and test it to the limit as much as possible in terms of we already felt like we were sort of fragile. You know, we were had just walked through a lot. And then that when that diagnosis came on top of that, it really, you know, I grieved and was and felt really sad. I let myself kind of sit in that sadness. And my husband's response to that feeling instead of grief. It was rage. He was just so angry. So angry. Angry that it had happened. Angry that just angry. Yeah. 100% the only thing that felt like he could sit with was like utter rage. He was just so mad. Yeah. And that was very hard for us to walk through together of me feeling sad. And him feeling Rayji right.

Scott Benner 28:01
And like it was you're taking care of the kids. So right and like

Abby 28:05
me, me wanting to just like, not, it's so interesting, again, that mother instinct, I can almost take you back there was like a moment, he was probably been diagnosed for two weeks. And there was like this feeling that like rushed over me of, you know, Abby, get it together, like the you are his mother. And you can be sad, but you have got to fight like hell. Now. There's no other choice. Like you don't get to lay down and just give up or just feel like this is overwhelming or feel like, you know, there was just this primal urge of like, fight and do whatever you need to do to make this the best it can be that like, I could take you to the moment of like, I remember that feeling of okay, that's enough. And like, now it's time to get to work.

Scott Benner 28:58
Yeah, cuz the the, the alternative is you just lay down and die. Yes.

Abby 29:02
I mean, you could just let it slide. I've talked to other moms, you know, that have been their children have been diagnosed, since shame and just can empathize so deeply with that feeling of just wanting to, like let it swallow you up, like the grief and the sadness and the overwhelm of like, I just, I cannot do this. But as a mother, it is simply not a choice that's afforded to us. Right? You You do not you do not do that. It's your child and you'll do whatever you need to do.

Scott Benner 29:35
Right. It's a for me, it was more of a leap. I think because I'm not a mom, you know, honestly, yeah. But I was a stay at home dad. There was this time where I felt like my wife if she was with them right now, like if she was with them every day, she would know what to do. There'd be a more instinctual thing going on. And then that would mean they'd receive something that they probably need. deserve. And I have to stop acting like I'm just keeping them alive. throw myself into this, this feeling and which is why now I feel like I'm probably just too overly shy from being able to give birth myself. But I just realized that guys, like if I'm not as emotional as I need to be, and I don't overcome all the demons of how I grew up and all of my problems, then I am just going to extensively throw everything that went wrong with me on to them. Yeah, and steal this experience they would have had with my wife it financially, we could have done it the other way. Yeah. And so I was like, alright, well, I'll give over to it. But it's the hard part was that it felt like you were giving something else away. And I didn't know what that thing was the idea of what I thought my life was going to be or what I wanted it to be or something like that. Right. But once I realized that they were the most important thing, then, and I dedicated myself to it, then I didn't feel like I lost anything. Now I just feel like I'm I have a different purpose. And I'm doing a really good job at it. Yes. Interesting. You know, absolutely. Yeah. Phil. Oh, wow. See how much diabetes Yeah. I get notes from people sometimes, like I learned a lot about the world from your podcast, it's always about diabetes. And I was like,

Abby 31:18
oh, wide range of topics. You never know what you're gonna hear.

Scott Benner 31:21
Talk about Bolus is every time. That's no fun. Okay, so what was the diagnosis? Like, what what made you notice that it was happening?

Abby 31:33
Again, my husband is a firefighter. He's also an EMT. And so he has, you know, he's medically inclined, I'm not a clinician by background, but I have worked in health care for years. And I'm like, clinically, I guess, literate would be the best way to describe that.

Scott Benner 31:48
I guess then you found out he had type one diabetes when your husband ran his head through the drywall. Not quite. You just You heard him yelling, going. And then boom, but

Abby 32:00
that was not quite. So there. Again, behavioral was, we had seen some regression in Shea's behavior once Sophia came home, and we were trying to parse out like how much of this is adoption behavior, how much of this is developmentally like he's just struggling because he has a new sibling like it was, we were in this space of there's some stuff going on, he had had a history of like occasional urinary tract infections. And so we started to see some regression around wetting the bed. And this was a child that was like, the easiest kid to potty train, like had never, I mean, he just was simple. It was so easy. And then all of a sudden, it became like, this repeated thing. In full disclosure, I have a lot of mom guilt about this, like it. I was irritated and angry with him at times, because I was like, it felt in the moment like regression around attention seeking, right, I just have been trying to do something like power staff it was, and I'm like, I know you're capable. You've been capable of this for like, so many years, like what's going on? So that and then so that was one thing, one part. And then that was coupled with he is, you know, does so well at school and is a very, like rule oriented kid, meaning he like, loves his teacher doesn't get in trouble. And always, he's just that kind of kid. He always has been. And he got his card pulled in first grade for asking to go to the restroom, when they had just gone to the restroom at lunch. And I was like, Why did you need to go to the restroom? He was like, I just, I was thirsty a lot. And so you know, it was funny, but not funny. Ironic, I guess my husband that it's like, and maybe you've had people say this before, it's like, if we just didn't say the word then it just wouldn't come true. Both of us like telepathically, you're like, we need to make sure he doesn't have type one. But in but to say out loud, let's go get him screened for diabetes. We just were like, Yeah, let's just like make an appointment as a pediatrician and double check that he doesn't have a UTI that there's not something like strange going on very, under the radar. Like we're just gonna this is a it's gonna be a non issue.

Scott Benner 34:20
being super casual knowing that you're wrong.

Abby 34:24
I mean, honestly, I'm going to be I know what you mean. Um, this is part of me being naive in this I was like, you know, he's Asian. And the propensity of type one in the Asian population is a lot lower. So I was like, He's not gonna have diabetes. He's, he's native Taiwanese, like the odds of uttama nice child having type one has to be even more tiny, then like, the average, you know, population. And so in my mind, I had sort of already written it off of like, there's no way this could be it.

Scott Benner 34:58
Yeah, you didn't do the math for you. Like we flew all the way to China to do a lovely thing. And the baby had medical issues immediately. Maybe we are the people this stuff happens.

Abby 35:10
Yes, obviously not done the math.

Scott Benner 35:13
So can I stop for a second? It's super funny, because I hope people are listening who have, you know, natural children who have these problems? And they feel like, oh, it's, you know, like, we're cursed, or did this stuff always happens to us, like, you randomly took people from other places still had the same issue was

Abby 35:35
absolutely I'm still, oddly enough, Phil, you know, I've read and listened to people talk about this weird feeling of like responsibility of like, Oh, these are my genes. And like that is that I, quote unquote, cause this, you know, like that what happens is a parent, I even had those same feelings. And again, you know, genetically, I have no responsibility for either my children, they do not obviously share any of the same genes. And I still had this weird feeling when he was diagnosed of like, I'm responsible for this or like, did, what did I do here? You know what I mean, even though that made no logical sense. But that's how I just resonate with biological parents who have that feeling of Gosh, this, these are my genetics somehow that like, set this up to happen.

Scott Benner 36:22
That's not Yeah, that's not even specific to people having genetics, like their own biological children. Wow. Yeah. I don't even know why I brought up what I said, other than I think there's a lesson in the word somewhere, but I haven't parsed it out yet. I don't know what it is, but that you can let go of that guilt. Now. If you have it. It's not you didn't do anything?

Abby 36:42
Absolutely. So much.

Scott Benner 36:45
There's so many people that I talked to through the podcast, that it's become kind of obvious that a lot of people who say they have type one have sort of like Irish English backgrounds. And I know that anecdotal, but I mean, unless that's the only people are listening to the podcast, but it seems they see I'm not marketing to it, just a pasty white crowd, you know, so I don't think that's what's going on. But think about that, like, what if that's true, like, forget it? If it is, or it isn't, just make it true for a second, for the sake of argument. You didn't choose where your ancestors were from? This has nothing to do with you. And yet you'll spend time like beating yourself up over it. It's sad.

Abby 37:25
Think it's because our brain desperately wants to assign meaning to something when it's catastrophic, right? We just need we need meaning and we need a reason. And so like, our brains will do anything to try to make this make sense when like, it's never going to make sense, right? You just have to accept it. You could almost pick Yeah, so I'm sorry. Um, so yeah, so we had these, you know, symptoms, and this is how nonchalant we were sort of being about it. My husband was training for this very intense. It's called smoke diverse training. He was going out of state for this. He'd been training for like, 12 weeks crazy intense, like, it's like the Navy Seals of like firefighter training that he was like going to do. And he was leaving town that the morning of the appointment. And so he was like, Look, let me take him to his appointment, we'll do like a daddy son breakfast date at like waffle house, I'll take him to his appointment, and I'll take him back to school. And that way, I can see him before I leave for the weekend. And so I'm always the one that like, goes to the appointments and does all that. And I was like, You know what, you take it, that's fine. That's how naive I was at this is gonna be like a non issue. And, you know, he called me and they had done, you know, a finger stick and his glucose in the office was over 500. And he was like, You need to get in the car, like, you need to get here. And so, um, barely remember the drive to the pediatrician. It was about 15 minutes away. I was probably doing 100 miles an hour to get there, like threw stuff in a bag, because I knew we were going to the emergency room because that, you know, and so we got there went straight to the local children's hospital. And it was on a Friday morning when we got to the emergency room and very thankful that we did apparently intervene soon his agency at diagnosis was only 8.4. So he did not have to go. He was not in DKA. We did not have to. We didn't even get admitted. We stayed in the emergency room for about 12 hours. And then we're able well maybe not even that long. We were able to be discharged straight to the outpatient endocrinology office on campus and get all of our education and stuff and so the whole from the appointment to the time we got home that night was probably about 15 hours and then yeah, so he didn't even have to say yes no and then so he is always reminds me now of like Mom, I told you I was doing the best I could But like you didn't believe me, and I'm like I know. And that makes me a horrible mother because I did not believe you.

Scott Benner 40:05
I tried to be really honest on this podcast. And if you think that you can't feel attacked by your children, sometimes it's a completely irrational thought. But they do something sometimes. And it's hard not to think, Yo, you don't know me, but I used to be a person with dreams, who was in charge of someone's life, and I'm here doing this thing I can you run through that thing in your head, then you're like that. They didn't ask to be here. Yes. Or no, like, I'm thinking, you know,

Abby 40:31
and I say that a lot is like, you know, neither, especially in our children's situations, like, you know, they, they, this is not the life like they had no say, in any of this, right? Like, this is like, they are here in this world in this life. And, yeah, they didn't really have a

Scott Benner 40:48
choice in that being adopted. It's twofold. Really, like you really did decide to get them You didn't just be like, Hey, let's see which one comes out. You were like, I'm gonna go get somebody, you know, yes. Intentional? Not that. Not that. Not that having sex. Maybe isn't intentional, but I don't know, there's something about that, that makes it feel like, like, more so. Okay. So

Abby 41:07
and good. It's, it's interesting, because, you know, I didn't when we brought home, Sophia, I did not feel I didn't identify as like a special needs parent, or like a child, I just, you know, he was always like, my healthy 95th, percentile height, weight, you know, just, he, you know, I just didn't identify that. And then overnight, you know, I was the parent of a child with a complex medical condition that was going for testing, and it needed medication and needed monitoring. And I didn't know anything about that world. And so it literally was a flipping of the switch with her. And what I'm grateful for is that I can clearly see how hurt her joining our family was in some way equipping me for what was ahead. I just did not know that was coming. Right. So I was already in a much different place. Thanks to her. In terms of I know what I'm capable of, I know that I can manage something. So that I don't know when when we got his diagnosis. Yes. Well, obviously, like overwhelmed and all of the things that is it's a natural feeling. I also felt strangely strangely equipped, because I already had a child that had complex medical needs that I had to manage

Scott Benner 42:23
your expectations for yourself are different at that point to where you don't. It's not like, I wonder if I can do this. It's like, well, yes, I know. I can, you know,

Abby 42:31
I've proven it. Yeah. I'm capable

Scott Benner 42:33
doesn't mean you deserve more for all the, for all the religious people listening right now, I'm not saying that Abby was, like God, a baby with type one because she was ready for it. Because I, I understand the sentiment behind that. And I know when people say that to you, like, Oh, if anybody could do it, you could like that's a nice sentiment. But I mean, in real world, that's bull, you know. So

Abby 42:56
I agreed. I had a pastor one time that's used an expression that he says things say easy, but they live hard. And I feel like that's in that category. Right? Like, it's easy for someone to say that about, but like the lived experience of that is obviously a completely different

Scott Benner 43:11
story. It also paints the picture that if I'm, if I'm a screw up, then nothing bad will happen to me, which is weird. Like, like, I tell people like, look, just don't be ready for anything and nothing battle. Yeah, it'll be. Yeah, I do. I do want to, before we move on, reach back to something you said so, so long ago already, that I let get past is that your life just worked up until then. You had something you wanted to do it? You did it, it happened. And I think that is so common for people like, you know, I mean, I can be honest, I guess you you grew up one of two ways. I can tell you that. Nothing in my life happened easily. But I grew up that way. But for somebody who did, like I watched my kids, like my son's athletic, he's handsome, he's strong. He goes to do something he does it, he decides when he's 2121, I might want to try to pitch and goes out and like throws a ball 91 and a half miles an hour, the first time he's like, Oh, maybe I could just get drafted and do this. I was like, you know, like, like that stuff. And then out of nowhere, he got Hashimotos. And I watched it, like, crushed him. Not for long. He pulled himself together, but it crushed him because I kept thinking, nothing's ever really gone wrong. Or, you know, like he doesn't have any perspective for something not working out the way he wants it to. Yes. And I keep wondering if maybe when he's older, hopefully I can try to stay alive long enough. I wonder if he'll look back and think like, Thank thank, thankfully, something happened. That gave me some better perspective. Because when stuff goes too well for you, you really don't have any real world perspective. And

Abby 44:48
yeah, grit is not developed, right? In that sense whenever it's only easy and not that you you know, want to sign up for like tough experiences in life. But I think, again, that's why on this side of it I couldn't say I'm grateful that it happened the way that it did for us because I would not be the person. I mean, I know that's sort of cheesy and people use that expression in different ways. But like, honestly, I wouldn't be the person that I am. If that had not happened, and it shifted me and shaped me in a way that like, it changed me for the better, you know, even though it was not something that I would have willingly, like signed up to experience.

Scott Benner 45:25
No, I I understand that sentiment, I completely agree. Okay, so you're home from the hospital? Yes. It's only a few years ago. Do you start with like Bucky? Or do they give you the start out?

Abby 45:38
So we started out on asking like, what do we come home from the hospital

Scott Benner 45:43
insulin needle? Yeah. So we came

Abby 45:47
home on nollag. Obviously, injections and on Oh, my goodness, I just went blank on his long acting insulin. No, the other one. Just see, but thank you, my brain. It's been so long since I've had to think of it because he's on a pump now. And so like, I haven't hit? Yeah, so we came home on Tuesday, but and no vlog. And yeah, you know, the first that first weekend was horrible, like, a lot of parents, like, you know, he cried. And, you know, he also was a constant snacker. And he loved second portions of everything. And, you know, for him to realize that this can't be, you know, that that world is over, at least for now. And we have to figure out how to do this. And that weekend was horrible, you know, for him and just grieving, watching him grieve the loss of what he knew prior, you know, I always have deep empathy for kids that are diagnosed, even in their, like teen years, because it's like, you clearly know what life was like before this. And even for him at, you know, seven. He knew what life was like prior to this. And so yeah, so we were on that combination from diagnosis in November, and because of the podcasts, and because I'm an avid reader, and I, like will devour content, if given the opportunity. I always laugh and say, I just proceeded to get myself a master's degree and all things like diabetes related and studied and proved to our endo that we were not a typical family in the sense that we could handle, we could handle the data of having a depth Dexcom it was not going to overwhelm me. You know, we had that whole conversation of, if we put you on one too early, it's going to overwhelm you because there's so much data to look at. And I just made the argument that the lack of that data was giving me anxiety, like I wanted to know, honestly, he got the Dexcom, the week before Thanksgiving. So again, we we got it pretty quick. Yeah, that was the first time I felt like I could breathe was just when we got that I felt like, Okay, I feel like I can breathe just a little bit in terms of sleeping, which still doesn't, you know, isn't super great. But it was better than and then started to advocate pretty heavily that we wanted a pump. But we wanted to make sure that we were letting Shea drive that conversation and not us. And I actually think it was maybe one of our diabetes education classes where one of the nurses had said, like, parents push often for a pump very quickly, but just be mindful, it isn't on your body. And so like, you do need to make sure that it's what your child wants, and that you're not the one trying to push for that. And so I I did try to take that to heart and make sure I was we were giving him voice in that. And we actually went to a like a regional type one event in January of that year. And he was in like a kid's class that day while the parents were in sessions. And it was it was a JDRF event. And we got in the car that day to come home and he was like, Mom, they all had pumps. I want to pump like, you know, that was his first visual exposure to other kids that had it and he was like, Yeah, that's what I want. Yeah,

Scott Benner 49:16
no one had a pocket full of needles like me. Yeah.

Abby 49:19
So once he was able to verbalize like, Yes, I know, I want that. Then I started full force. Like we're doing this like as fast as possible. And so he transitioned to a pump in March of 2020. Literally, he was on spring break, and never went back to school of course because of COVID. And so when on the on the pod and yeah, we've been on that ever since.

Scott Benner 49:47
Well, I think when Omnipod five happens your overnights might get a little better.

Abby 49:51
Oh, I just Yeah, I was reading an article just this week to my husband and we were just like, Well, life is gonna be awesome. Very soon.

Scott Benner 50:00
had COVID not happen? I think it would be out already. Yeah. So

Abby 50:04
we were willing, he's been very vocal again, he loves his AMI pod even, like, we let him of course he came home with, you know, a couple different options and tried them but for him the the, because of the fact that his to Bliss, I mean, he just he was like there is no other option for me. He was adamant that that's what he wanted. And it's been, like, wonderful for him and life giving in so many ways.

Scott Benner 50:33
How did you find the podcast?

Abby 50:35
So I have a, I grew up in a small town and the neighboring county, like we were very small town as well. And, you know, we all you know, everybody close by you and that sort of thing. And so there was another mom that she went to like a local high school that was like in the county over from mine. And we've always known each other and her daughter has type one and I believe the Facebook post I made of when we came home the next day, it was a picture of him in the ER and asking, you know, letting everybody know what was going on. I can go back and look, I actually think she commented in that thread tagged you or the podcast when you you commented back. Oh, did I? And yes. Remember, and yeah, so that's he was the weekend we were diagnosed. And so

Scott Benner 51:27
he found it right away. Like listening. And

Abby 51:31
yes, I remember, binging multiple is pre pro tips. Like, that wasn't a thing. Really. I mean, like you hadn't organized it in that sense. And so I just remember, like binging I think in that Facebook post, I asked, Where should I start? And you gave me some suggestions in that thread of like, here's a few episodes to get you started. And yeah, so thankfully, I didn't go too long at all, before I found you as a resource.

Scott Benner 51:59
That's cool. It's hard for me to remember the podcast the way I intended it in the beginning, because it was so like loosely like I'm like, let me just get started. And like, I'll tell the story. And we'll see where it leads to. It's fascinating, like I'm really, really touched by the fact that it could be valuable to anybody.

Abby 52:19
Well, you know, and really neat story. I've used it so often. I mean, even in my current full time job, I work remotely that was pre COVID. It's a virtual organization for the most part, and you know, a person on a different team than mine. Her daughter was diagnosed just a few months ago, and even just this past week, she had DM to me and slack and said, My daughter, we're struggling, she's still on in VR. She's sneaking food, I don't know what I'm going to do. And immediately I was able to go and like you had an episode on that. And I was like, Damn that to her and said, like, Have you listened to this? And she's like a habit. So thank you. So it's just always nice. I feel like when somebody has a question, there's usually always an episode that matches

Scott Benner 53:03
I'm starting to feel good. That that's true. Because I'm starting to find myself seeing people's questions and be like, Oh, I can just answer with an episode. Like, that's really cool. Like, what you get out of longevity, too. Yes, it's been around for a while. I'm thrilled that it. I didn't ask you, but it has been helpful for

Abby 53:19
you. Oh, no, it's been immensely helpful in so many ways. Um, yeah, it was. It gave me language that I didn't know that I needed. And I really do feel like it helped me advocate in a different way, I felt more confident in my ability to advocate for even for a pump. I just felt like I had the language to just know what I wanted to say that the whole thing about, I know, it's a tagline now, but like being bold with insulin, I'm so thankful that I listened to that early on. So that that feeling of being afraid of giving too much like that just never I didn't sit in that space because I had listened to that episode. So early on maybe in the first week we were diagnosed that that didn't have time to take root where I had that fear. And so I don't know, it's just always it started me off on a foundation that I felt like made. Yeah, it made our transition to this world. A lot less lonely. For sure.

Scott Benner 54:20
That's excellent. I have to say that. The idea of I know, I've seen people, like, you know, people who are like maybe like more low carb, they'll be like, That's the bold with insulin guy. And I want them to know, like, I didn't come up with that. Like, I know, it's the title of the episode. But if you listen enough, you realize that while I'm editing, I just go Oh, those are words that sound like a title. And I put them on. I don't really think too deeply. So it was maybe two years after that episode came out that I started seeing people use the phrase on social media. And I remember thinking, that has to be me, because I've never I heard anyone say that before, so much so that I was like, I think that's an episode title. Like, I wasn't really even certain, you know. And then I went back and it was I started asking people questions like, yeah, there's that episode that teaches you to be bold with it. And I was like, Oh, is that what it does? Like, that wasn't like I was just telling a story that day. You know, I think that was just that's a one on one episode. I'm just talking into the microphone. Yeah. And I think back and I'm like, I wonder what would have happened if I picked three different words out? That that would have been it would have been it, you know, Would you've been running around saying a different thing? Or? Yeah, it's, it's a, it's kind of weird that that's the case. And I just spoke with them. I've spoken recently with two different hospitals. And I should knock on some blood because I really want to do this. But I think I might be invited to teach their staff how to talk to people about diabetes, that would be here. And that is just comes from having all these conversations with. Yeah, yes. And you guys are all like, sort of like, my knowledge is now an amalgam of all of your experiences. Yeah, it's weird. I feel like I'm, I don't know. Like, I feel like I'm like, I'm like, Siri.

Abby 56:11
So good. So good analogy I like,

Scott Benner 56:14
and I love like getting better and better. I got a thank you from a little kid today, like a little voice note. That was like, it just is like this little six year old kid. And he's like, Thanks for teaching my mom all this stuff. And I sent it to Jenny. And I said, I'm better at this because of you. And, and so I think it's just starting to be that thing where it's just we're feeding ourselves and each other. And it's a very, very cool, so I get a little misty when I talk about and usually recording, so it's easier to get away with. But your story is messed up.

Abby 56:49
Oh, I say like, when I we go places like we just went to family camp for our second year in a row. And I was like, meeting with the counselors that we're going to be working with him. And I'm like, like our family. We're a lot. We're very complicated. So just buckle up. Let me explain all because a lot going on.

Scott Benner 57:07
Has anything helped you? And your husband like you were sad. He was mad? Are you guys in those places? Still? And if not, what do you think helped?

Abby 57:18
Yeah, oh, I mean, a lot of therapy, honestly, a lot of support. I mean, really, honestly, therapy has helped immensely actually talking about. I mean, we were pro therapy before this, but I think like specifically being able to process that process that and how each one of us were feeling very different and having very different reactions to that. And especially for him helping him come to terms with like, what caused that in him. And it was like the lack of control and as a weird and maybe you can relate to this as a dad also this like, we talked about, like mom instincts with this, like, primal feeling as a dad that my job is to protect and feeling like for whatever weird reason I didn't. And this even though that's illogical, right? Like, that's not possible, but him feeling like this has happened. And like, again, this, I didn't do my job as a dad, like I don't I feel like I messed up somehow. And which was not obviously a healthy response, which he had to unpack and figuring out, but I think it was I read something not too long ago, and she used the analogy of scaffolding on a cathedral and how, you know, scaffolding is so ugly. And it may it takes a building that's, you know, beautiful otherwise, and like, it just makes it look so ugly, but it's necessary to restore and maintain something that's precious. And, you know, I think I've said we have lived these last few years with a lot of scaffolding up. Yeah, it's been ugly, but it's also been very necessary to preserve what's precious, you know, underneath all that. And so we are slowly like those pieces of scaffolding are being like removed. But it's been an ugly process. You know, it's not been always nice and neat, but it's worth it. It's just it takes time. Right healing around that sort of stuff just is a long process. But we're it's a much better place and where we were, it's just it took a lot to get us where we are.

Scott Benner 59:32
I have two episodes coming up soon that will be out for months by the time yours goes up. There are two different therapists and they're both about relationships and yeah, around type one because it's so difficult and I relate to what you're saying because I am inherently inside of me. I want to fix problems. Yes. And then just not just big ideas. Like if you were to come to me and tell me about your De, and it sounded like something inside of it wasn't going right. There was a time in my life where I wouldn't have been able, I wouldn't have even been able to hear your story, I would have already been constructing a way to fix the problem that you just, I wasn't even listening to the people who were talking to me. I was like, How do I fix this for them? Yes. And it's obvious, like if you listen, it's obvious. I'm adopted for one, right? My parents, even my adoptive parents are divorced. And when my mom when my mom dad broke up, I became kind of the de facto parent of my brothers. Like, I've been fixing people's problems since I was little. Yeah, yeah. You know, and now I get into a situation where every problem doesn't need to be fixed. Yeah, I can't stop myself. Like, I'm a fireman who sees a fire everywhere. Even. Yes,

Abby 1:00:46
exactly. Yeah, that was like, he was used to being that guy, right? Like, I'm on scene, I'm in control. Like, we're gonna get this figured out. And then, and then it like, struck really close to home of just being reminded like, I am not in control. I think the fragility of life gets very thrown in your face, right? Instant of like, okay, there are some things that I this is real, like, I can't prevent things from happening, you know, they're gonna deal with hardships, and I cannot take away from them. And so what, how am I gonna sit with that uncomfortable feeling? You know, it's something I can't fix.

Scott Benner 1:01:26
You also get a false sense that you're actually fixing something like even even in the firemen analogy, you go, you put the fire out, you leave. And you're like, we did it. Except they still don't have a place to live, their cat's dead. They don't have clothing. They look like you didn't really fix the whole thing. You put the fire out, right? And so even when your kids are asking you stuff, and you're like, Well, you know, I don't know, XYZ do this, that fixes that problem. I still wasn't listening to all of the other emotional entanglements that were going on. I was like, Well, I see a tangible problem in front of me, I know how to fix it. Which is why you'll hear me like joke and not joke on the podcast. And I say like, if the zombies come you come find me. Because I'm gonna be at the end, right? But it doesn't mean I'm going to be alive and happy. I'm just gonna be alive, right? I'll be, it's not like, um, it's not like, I'm going to be able to build a utopia somewhere. I'm just not gonna let the monster get me. Yes. Yeah, kind of how I feel. Let me sense anyway, I imagine your husband probably had similar feelings. It's cool that you did that. Did you have to cajole him? Or did he go willingly? And what way to therapy?

Abby 1:02:34
Oh, no. Well, I think because we had already we had such a foundation of like, being a pro therapy family, because we needed to be even before you know, he was even before she came home. We've always been a family when you when your kiddos are adopted. You know, if you're if you're wise, you don't wait for problems to emerge. Like you're you try to be in front of a lot of that. And so a lot of what we've done was probably what I would call proactive therapy. And and we were kind of trying to get in front of things have good conversations about stuff. But this No, he didn't fight it. Because he also knew that the end result of if we didn't process it, or like, you know, walk that path to healing was not going to end well. Like he knew. So yeah, he went, it took us a little bit to find the right person. We struggled a little bit with that, but it's been one of the healthiest things and I think honestly should be required for your link every newly diagnosed family, I think you should get you know, and Dexcom and a therapist.

Scott Benner 1:03:42
I just said this somewhere else, but I'll put it here too. COVID did one good thing. If it did anything. His mental health has gone online in a big way. And yes, it made it much more accessible for Pete green. So I think that's great. Yeah, dude, you were amazing. I didn't know you were great. I struggled to get you. So what happened that I moved you first because of my trip? Oh,

Abby 1:04:07
yes. So I think so. We had booked it. And then you emailed and needed to move it. And I think I must have not moved it on my calendar. I left the original appointment. So I thought it was yesterday. Yeah. And then when the reminder came out from Squarespace. It was like it's today. And I was like that I'm like, I have a team meeting at that time slot that was like we had a training and it was like non negotiable. I had to attend. I was like, I'm not going to be able to do it. And so yeah, I'm glad that

Scott Benner 1:04:35
thank you. I can tell you that. I can tell what you do for a living because you are You were so good at laying this out. Oh, yay. I've never not I don't think I've spoken this little in a long time.

Abby 1:04:50
I'm a talker too. So I'm from the south. We thought I don't

Scott Benner 1:04:55
know. But had you gone in a way that I would have been like, Oh, this is blowing the flow of this. I would have Like redirect, did you okay, but I was like, wow, she's doing so good. Like, there was a moment. I was like, I wonder if I could leave? Do I mean to be here? She's doing such a good job, I could probably go make a sandwich or something and come back and just be like, you know?

Abby 1:05:17
That was a compliment. I hope it wasn't that I was taught. No,

Scott Benner 1:05:20
no, absolutely compliment. You. There are Listen, you guys hear every episode that I record? I think of only maybe destroyed two or three of them for reasons of the people that recorded asked, you know, and they've always been reasonable. I've always thought at the same time, you know, you're right, let's be done with this one. But there are some people who are more natural at getting their story out. There are some people who feel the flow of it, there's some people have it planned out in their head, and that stifles them. And there's some people that have it planned out in their head, and that helps them. Yeah, I think about like little Sophia from Russia. And if you heard hers, right, at one point, I tried to move on, and she was sort of like, huh, we're not done here yet. We need to go through this cart. Alright, geez. You know, like, but that's But everybody's different. But everyone's great in their own way. Yeah. Just you were. You clearly talk to people and explain things to them. Yeah. In Your Life. Yeah. So yeah, really good.

Abby 1:06:20
Um, absolutely. So thank you. I'm, like, I really am grateful for for I mean, I know people say that to you. And I know, you probably. I don't think I mean, you don't probably get tired of hearing it. But in, honestly, like, you were a lifeboat to our family when we like desperately needed it. So now I'm gonna cry. Okay. Thank you very much. I really appreciate people don't understand this world. And you feel so lonely when you're first diagnosed, and there was something so comforting about like, I just didn't feel alone, because I could listen in it. I mean, it just, and it also an action person, I just felt like there was this like, again, when that primal instinct of like, get to work, I felt like it gave me something tangible to do, like I can do, like, I can consume his content, and I can do something with it. And I felt like it gave me empowerment of like, I don't have to just sit here and wallow and feel like it because this is bad. Like, I can do something about this. And so the actionable part of it, I've always appreciated.

Scott Benner 1:07:39
No, that's cool, because that's one of the things I did on purpose. So is the idea of boiling the concepts down that they were so small and understandable that you could actually be like, I think I could try this. Yes, you know, like, instead of just feeling because you have to get over to the idea that everyone newly diagnosed, or even if you're struggling, you're overwhelmed. If you knew what to do, you'd be doing it, of course, right? It's not happening. If you're a parent, you've got the anxiety and the stress if you're an adult with type one, or were otherwise your blood sugars are bouncing all over the place. It's difficult to think. And now people come in with these overly complicated technical explanations with a bunch of words you don't understand. And after they're done, you're like, I don't know what I'm supposed to do. What am I supposed to do with that? Right? So I thought, why don't I just explain to people what's in my head? Yeah, you know, which is just, like I've said before, like, I don't have the ability to break that stuff down, either. That's why I made the podcast because yeah, I mean, that's why the Podcast, the podcast exists, because I didn't want to count carbs. That's one reason, you know, I needed a different way to do it. I've come to realize now over time, in my heart, it's a it's a time capsule for Arden a little bit, like, you know, like I wanted to be able to, like understand diabetes, like even if like she wakes up when she's 30. And she's like, let me figure out what this guy was talking about. You know what I mean? Like, it'll all be there for for her. I love that man. And it teaches me, like, while I go, I have a lot of ideas while I'm talking to people or moments like even like when the podcast is kind of like delved into, like talking to therapists, or like that kind of thing. It's all really important. And we say it's important, but then no one talks about it. Yeah. And I think that self help, which it ends up being is far less about directions. And more about like, like visceral understanding. Yes, the shared experience. Yeah, you people give people bullet points and expect them to fix their life with it.

Abby 1:09:39
It's so true. I also think there's something again, this is my world is there is something like, deeply sacred about holding someone's story. And like that's what you do is like you, you, you, people come on here and like, You are the holder of that space and like that, that is Is there is something in that that's really, really special and unique. It matters, you know, people being able to tell their story and that sense and having somebody hold space for that, like, it is important. It really is someone

Scott Benner 1:10:14
has to do that. It's, and it can't just be anyone. And I don't mean this as a pat on my back, but like he can't just it has to be somebody who holds your attention. Whose voice makes you feel comfortable, whose Guess whose cadence makes you feel like, like, I remember watching Dave Chappelle receive, like the Kennedy Center Honors. And he said that when he was growing up his mom, um, I don't know all the details. So I'm gonna sound like an idiot for a second. But there's this this older idea of that there's a storyteller in the tribe. And that, and that she saw him that way. And and I was like, oh, that's super interesting. And, and I don't see this is any different than that? Yes. Right. So it's very specific. It's very niche. It's diabetes. Yeah. Almost more specifically, type one, although I do think a lot of the management stuff we talk about. Even the ideas if not the insulin fits with type two. Yeah, has application. But I just, I think what you said is really, like insightful. And I appreciate it. Because it's so easy to look at this and be like, Oh, it's a podcast. But it's, it's everybody from all over the world. Yeah, getting to add into the story of what it's like to live with type one place where it's actually consumable, not like, oh, I ran into an article once, but then I didn't see the next one about the next person that this is the hub. It happens here. Yeah. And so that is magical. Yeah. And, and it's, it's perpetuated by the people who listen, because you don't grow a podcast on purpose. You don't buy ads. Yeah. talk people into listening to it. It literally has to be your friend telling you, yeah, and you doing this and people have

Abby 1:11:54
to be organic. It just doesn't

Scott Benner 1:11:57
work. Well, first, let's thank Abby for coming on the show and telling us that amazing story. Thank you, Abby. I want to remind you that it's diabetes Awareness month in November and National Adoption Awareness Month. Thanks so much to Dexcom makers, the Dexcom G six continuous glucose monitor for sponsoring this episode of The Juicebox Podcast. And thanks again to Omni pod head over to their website and find out about that on the pod dash. See if you're eligible for the free 30 day trial. That's it on the pod.com forward slash juice box. And of course, the Dexcom address is dexcom.com forward slash juice box. There are links to these and all the sponsors in the show notes of your podcast player at juicebox podcast.com.

Couple of little things at the end here. First of all, thank you very much for listening to the show and for supporting the Juicebox Podcast by sharing it with other people. I really appreciate that. What else Oh, T one D exchange.org. Forward slash juicebox. US resident has type one diabetes. US resident is the caregiver of someone with type one in less than 10 minutes, you can fill out a survey that will help other people with type one diabetes, and it will help the podcast. If you're enjoying the podcast, you should check out the Facebook group Juicebox Podcast type one diabetes, it's a private group so you can go in there and really talk about type one. There are over 17,000 members in that group who understand life with type one diabetes, the group is absolutely free. should go check it out.


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#571 Insulin Cost: A Father's Fight

Scott Benner

The father of a type 1 is trying to change insulin pricing in America. Support H.R. 4813 — Matt’s Act of 2021 at Insulin-Matters.com

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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 571 of the Juicebox Podcast.

When rods child was diagnosed with type one diabetes, and he found out how much insulin cost, he didn't just sit on his hands. He got involved rods here today and tell you about some legislation that he's trying to get passed. And he'd like you to listen to his story. And then consider helping out by calling your representatives and sending emails. We'll talk about that towards the end though, for now. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. You may have heard me talking about wanting to add as many people to the T one D exchange as I can in the month of November. Well, diabetes Awareness Month is one day old right now as I'm making this. And on November 1, you guys added 54 completed surveys at T one D exchange.org. Forward slash juicebox. If you're a US resident living with type one or caring for type one, please head over and give it a look. This show is sponsored today by the glucagon that my daughter carries G voc hypo pen. Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored by my favorite blood glucose meter, the Contour Next One, go to contour next one.com Ford slash juicebox. To learn more, and to get started.

Rod Regalado 1:57
Yeah. Hey, Scott. My name is Rod Regalado. And you and I briefly spoke a few weeks ago and and and you were kind enough to invite me on because we're we're trying to we're trying to pass a federal bill which puts a price cap on the cost of insulin. And so I'm really I'm just a single dad with a couple of kids at home. And, of course, that wasn't enough for me. I'm a glutton for punishment. So in fact, I actually brought in a foreign exchange student. So I've got three kids at home. And yeah, so that's kind of me and my son, Matthew was diagnosed with type one diabetes. And that's essentially how I started down this path about two years ago.

Scott Benner 2:43
So when you say we you're not you don't mean your lobbying Consortium? You mean? You? Right?

Rod Regalado 2:49
I mean, me? Yeah. Yeah, pretty much. Yeah. Let's find out. Yeah, pretty much a one man show. But, you know, this bill is going to die unless, unless our our brothers and sisters, our nieces and nephews, our parents and our kids demand some kind of change. And, you know, the status quo is just not acceptable. And that was, that was a reality. That hit me hard. When Matthew was diagnosed,

Scott Benner 3:18
how long ago? Was he diagnosed?

Rod Regalado 3:21
Yeah, it was September six. When he was 13 years old.

Scott Benner 3:26
It 2000 Yeah.

Rod Regalado 3:29
2019 19 2019 Yeah. Okay.

Scott Benner 3:33
2019 September, so you're just a year and a month into this? Two years, excuse me two years, I forgot what year was.

Rod Regalado 3:42
It happens to the best of us. Trust me, I don't think I'm the best. Well, you know, COVID COVID aside to kind of put everybody on the shelf for a year. So understandable. I get it.

Scott Benner 3:51
Fair enough. So, so two years with diabetes. You said you're a single dad have a couple of obviously a couple of people you're responsible for besides yourself. Right? What? What led to your even understanding of this? And the reason I ask is because as a person who has insurance, and whose child is covered by that insurance, I mean, I don't want anybody to get me wrong. I'm gonna play I'm gonna do a lot of devil's advocate thing while we're while we're talking today, right? Like,

Rod Regalado 4:20
no, perfectly reasonable. No, I want you to go right ahead. Hit me what you got.

Scott Benner 4:24
I don't know that in law. Listen, I know intellectually, that that insulin is incredibly expensive, and it's overpriced and, and all that goes along with it. None of that is lost to me. But in my life personally, insulin cost me $20 a month. Right. And so you know, what led to you being so aware of this and then tell me about how it impacted you and so forth.

Rod Regalado 4:49
Yeah, yeah, sure. So So Matthew was diagnosed and we take him to Children's Hospital. Truly, we found it accidentally I took him in for a sports physical That's how it kind of started, took him in for a sports physical. And that exposed the diabetes. And the very next day we were at Children's Hospital in Omaha. He was in there for about two and a half, three days. And they released him. Of course, I had to get all of the insulin and the ancillaries all the supplies, test kits, everything that goes along with it. And so after insurance, my out of pocket was north of 1000 bucks. But keep in mind, that's not just insulin, that was everything else

Scott Benner 5:36
hospital stay

Rod Regalado 5:37
the whole the whole kind of thing. No, the hospital stay was separate. Oh, okay. That was that was just the supplies I got you know CGM at that point.

Scott Benner 5:47
Meter Test trips, a little glucagon, some insulin needles, correct thing. Okay.

Rod Regalado 5:52
Exactly. Right. Yep. So 1000 bucks flies out of my bank account. And surely, if if they didn't ask me for 2000 that have given it to them. I just wanted my son home just wanted him home. So the following month rolls around, and time to replenish the insulin again. This time, I only need insulin, I've got all the ancillaries. And again, for short acting and long acting month supply after insurance. My cost was about 400 bucks. And now the gears are grinding between my ears. And I realize this is not sustainable. This is not going to work. So naturally, I call the insurance companies Is this legit? This can't be legit. I call my HR folks. See if there's any any recourse here. Is there anything else I can do? I call the pharmacist. Nope. It's this is what it is. And so I'm married to this invoice. And my son who's 13 is married to this invoice for ever. That's what got prompted me to call. Call a congressman. I don't know. I don't want to I got no rich uncle's and I've got I don't know any politicians. But I call it all. Yeah. I just called the office. I said, Hey, what is the deal with this? And that's kind of how this whole thing started. It was it was truly it was just a matter of me finding some resolution, long term resolution for my son, Matthew. That's what it was.

Scott Benner 7:27
So rod, you're talking about $400 A month by $5,000 a year that just suddenly gets added to your total of your out of your outgoing money. And it's for obviously for health. And so it comes first. Did you find yourself being able to pay it? Did you find yourself not paying other bills? How did you handle?

Rod Regalado 7:46
Yeah, right. Right. Right. So yeah, and that and that's, that's the problem. So luckily, I I make a good living. I work for a good company. And I'm my insurance I think is probably better than most. But the but my but my son doesn't have that liberty. He's He's He's 15. Now thinking ahead already. You're one right. So so yeah, to your question. How did I do it? Yeah. So you push one bill this way, and you push that bill that way? And you just figure it out? So the college fund? Yeah, sure. That takes a hit. College Fund, what college fund? Because you're paying off the hospital stay at the mera Lago with needles. If that's there, that's not going to go away. Retirement Fund. Yeah, that kind of takes a hit. Because now you got to shift what you're putting into that to compensate for the invoice that you got coming in every month. Yeah. So Right. And I'm not special. There's nothing special about me. But I do make a good living. I'm, I would say I'm middle of middle class. Not I don't make a ton of money. I'm certainly not destitute. But it's that's a burden. That's a That's a big number. Every month, every month.

Scott Benner 9:10
Is it fair to say that prior to diabetes, you felt like you were doing better than just getting by? Oh, sure. Yeah. Absolute. And then absolutely. Now you feel like I mean, listen, I don't honestly, I don't care how much money you make. I grew up broke $5,000. You might as well tell me a million dollars. That's a lot of money. You know, it is yeah. And a good point is that an amount of money that you can't come up with? Might as well be a million dollars. If I tell you if I walk up to a homeless person and say I need $50 right now to save your life. That that might or you might as well be telling them give me $50 million and bring me the Statue of Liberty. They can't come up with $50 it doesn't it's

Rod Regalado 9:48
yeah, you're exactly right. It is that is exactly it. So so we're just one family. So think about this for a minute. So in America There's roughly depends on what report you look at between seven and 8 million people that are insulin dependent. And type two,

Scott Benner 10:09
is that really the number? Geez?

Rod Regalado 10:11
Yeah, yeah, yeah. Yeah. So I think the CDC is, is claiming 7.5 million. And those are insulin dependent Americans. And, and the number of diabetics is growing exponentially every year. So when you when you factor in the type twos that are insulin dependent. I mean, that number is going to be massive in the coming years, massive. And so something has to give this log jam has to break at some point, it is financial ruin for so many families. And again, I'm just, I'm just one guy, Matthew was my son. He's my only son. Yeah, this is this is much bigger than us. When I started, when I made that phone call to my congressman. I was thinking about Matthew. And as I put my toe in the deep end, I realized this is so much bigger than me. And Matthew, is it is a massive, huge problem. Huge problem. So,

Scott Benner 11:19
okay, so you call you call, I don't even didn't even know who to call like I wouldn't. Like who

Rod Regalado 11:25
the hell? Yeah, yeah, I just so I called anybody would answer the phone, basically. And, and I realized, after a couple of months, that the only solution to this is a federal solution. And as you know, Scott, there are at present, there's probably 30 Plus states that recognize the problem. And so those states are passing legislation on a state level that price caps, insulin now, that's wonderful. But the issue with many of these state bills, is that all they'll throw $100 price cap at it. And that sounds great and makes fantastic headlines. But the issue is, if you don't have insurance, you pay the retail price. You're stuck with it. Retail Price, and and, and I do this periodically, and I'm not going to embarrass anybody. But I called last night and I do this every couple few months, I'll call and say hey, what's the price on this name brand fast acting insulin, and I did it yesterday. And I called a pharmacy in Little Rock. And they're fast acting for a box of five was 600 bucks. And then I called Tucson, another pharmacy 620 bucks. Well, guess what, you also probably need long acting. And that mirrors that within a couple 100 bucks, it mirrors the price of the fast acting. So suddenly, if you don't have insurance, and your state has passed a bill that puts a cap on it. Guess what, you're still tethered to that retail price. So Matt's act. Matt's act is truly a federal price cap. And so the way this bill works, is if you don't have insurance, the most you're gonna pay out of pocket is 60 bucks for the uninsured. Okay, it's remarkable.

Scott Benner 13:25
Alright, so I want to dig into it a little bit. So you call some you call a politician? And you say to them, This is what's happened to me. What do I do? I mean, did they say you're gonna get a bill passed? Like, how did you start down that

Rod Regalado 13:37
path? Yeah, yeah. So yeah, basically, I was calling anybody would answer the phone, and I called my congressman. And they were, they were very nice. And they took notes and they said, what we'll get back to you. And a week later, I get no phone call. There's no resolution, no sympathy. So now I'm, um, I'm agitated. So I call again. And they put me into this fellow's voicemail and I didn't know who he was at the time. And I left them pretty snarky voicemail. And literally, within within an hour or two, this fellow called me back and just so happens, this guy. I just landed in the right voicemail. This guy was the Chief of Staff for my congressman. And in fact, this fellow is a doctor. He's an MD. And he took up the cause. And he looked at the supply chain, he looked at what the hurdles are, and he looked at why, why the price is so high. And that that seed that I planted, became Matt's Act became our federal bill and it is a bipartisan bill. So you're not your congressman,

Scott Benner 14:52
after you made this phone call and you know, got it got the chief of staff and everybody starts thinking about this why he decided Did to write legislation and sponsored himself?

Rod Regalado 15:04
He did. Yes. He wrote they wrote the bill. And it is a bipartisan bill we so that that's really how it happened. They looked at the issues and why the insulin pricing is as it is, and and they found the mechanism that drives that price. And, and the reality is, it's the middlemen, the middlemen drive that price. Okay.

Scott Benner 15:31
So I guess for people who don't understand that terminology, so there's a pharmaceutical company, they they manufacture the insulin, there's you over here who needs the insulin? In the middle, there's an insurance company that you would think in the middle, there's an insurance company who has an agreement with, you know, I don't know how much of this people understand there's formularies that, you know, the the insurance companies say, well, we'll pay this much money for the insulin. I know, if I'm understanding it correctly, then the insulin manufacturers kind of set up the pricing. So that the formula, they're thinking about insured people when they're setting up this pricing. Correct, right. And I think part of how they do it, then the problem becomes that if you're not one of these insured people, the price is set up super high. And you don't I mean, like it's it's all to me, it seems like a dice game, so that everybody gets paid. And

Rod Regalado 16:29
it is yeah, right. Yeah, it's a game amante. It really is. Yeah, yeah. So basically, the way the system works right now, manufacturers produce this drug, which seven and a half, 8 million people have to consume daily. So in order for that product to reach the market, what they do, and what we're talking about is PBMs, pharmacy benefit managers, these are the middlemen, the pharmacy benefit managers negotiate between the manufacturers, and the insurance industry. And, and, and what they do is they say, well, we will place your insulin on the insurance formulary as a preferred drug. But in return, you guys, the manufacturers are going to give us rebates, rebates, you're not only going to give us rebates, but you're going to give us administrative fees. And so that jacks up the price and so these rebates, which is truly a trade secret, people don't know what those rebates look like, because they are trade secrets. It's not it's not disclosed. But if you don't, if the manufacturer does not pay the rebate, and the administrative fees, they are placed on a lower level on an insurance policy. So it might be a secondary or tertiary drug.

Scott Benner 17:59
And that's dangerous for them because then your doctor won't prescribe their drug because it's not covered by your insurance. Correct. Exactly. Right. Yeah, exactly. Right. Can't sell their stuff then. Okay.

Rod Regalado 18:09
That's exactly right. And, and not only that, but these pharmacy benefit managers also have a tremendous influence over the pharmacies, pharmacies, their pricing is set and if you don't charge your patients that retail price and they find out about it, they will cut you off. So they hold hostage the manufacturers and they hold hostage the the pharmacies and so you're saying

Scott Benner 18:41
that this is all set up so that the pharmacy benefit manager managers can make their money correct. And basically doing nothing but acting is like they're like the bag man. Right? They just they

Rod Regalado 18:55
truly are they truly are. They they are they are the they are the the dark people behind the curtain, pulling all the levers and they are they don't they don't package it any sexier. They don't make it any more potent or they don't get it to you faster. They do nothing but negotiate pricing between manufacturers, insurance and pharmacies they do nothing more than that. So

Scott Benner 19:21
how does this exist? At some point someone must have put legislation here's me guessing that years ago like oh, we need somebody to make sure everything's on the up and up so we'll put this this thing in place that and then it just they like everything else. People figure out how to game the system around good, etc. Yeah,

Rod Regalado 19:38
yeah. All I'm sure there is and surely Scott, I don't know how this thing was born. I know it goes back probably 2030 years and and I think the thought was if they have some middlemen negotiating the price, then the insurance companies would get a better return on on their negotiations. But in reality, what happened was, like you say, they figured out how to maximize their own profits. And they basically hijack the system. And that's truly what they did. It was truly

Scott Benner 20:13
any benefit that is there. Is it any good being done by a PBM? Or like, like for another drug maybe? Or like, is there I'm trying to imagine how something that's doing this can exist without somebody just going like, what we can't let this keep happening. So like, you don't I mean, does it do any good? Do you know that

Rod Regalado 20:30
that I can see no, no, truly, I can't. And I'm probably the wrong guy to ask that. Scott. Truly, I don't know. But it seems to me, if you look at the health care system as a whole. I mean, there's a reason why, you know, one in $7 is spent on health care in this country. Yeah. It and you got to think there's no way that these drugs cost that much to produce,

Scott Benner 20:55
it makes it makes you feel like it's entangled purposefully.

Rod Regalado 21:00
Sure. Oh, it's absolutely they've absolutely muddied the water. Yeah, absolutely. You can't have it at all. Yeah, I know, the average guy. I can't I can't make sense of it. But I do know, I do know, they hijacked the entire insulin industry. They did. So when they're getting away with it, what's

Scott Benner 21:19
the name of the bill that they put forth again?

Rod Regalado 21:21
Yeah, it's it's hr 4813. And it's, it's called Matt's act. Okay. 4813 is our bill number.

Scott Benner 21:31
And what does it do like, like layman's terms? What does the bill accomplish if it gets signed into law?

Rod Regalado 21:37
Sure. Yeah. So pretty easy. So basically, what we did was we, with the Congressman did was they looked at manufacturing costs, and they know what manufacturing costs are for insulin, because these manufacturers negotiate with the federal government, for Medicare and Medicaid, so they know what manufacturing costs are. So they looked at that. And they thought, Okay, well, we have to keep the manufacturers in business, because let's face it, they keep us alive. They keep us alive. Yeah. So they looked at that, and they said, Well, we know what manufacturing costs look like. We know what usual and customary markups look like. So they put a $60 cap, and that number is in flux, it might be $50 at the end of the day, and it might be 65. But that's roughly the number we're looking at. So if you are insulin dependent, and Matt's Act passes, that'll be your cost, if you are uninsured, and underinsured,

Scott Benner 22:41
and that's for your need, right, not for a file or a pen. So like if you're a person who needs a vial a month $50 If you're a person who needs three vials a month, $50 or no

Rod Regalado 22:50
$50. Okay. Yeah. What's your ever your prescription is? Whatever your purse? Yep. Yeah.

Scott Benner 22:55
And and this just covers people who are uninsured? What's the No, no,

Rod Regalado 23:00
no, our bill covers not only the uninsured, but the insured. So here's the genius of the bill. So if you have one of those high deductible plans, and let's say your deductible is, I don't know, let's say your deductible is $4,000. Well, you have to spend $4,000, before the insurance pays anything, anything. So you're you are going to pay the retail price, right until you hit 4000. The way mats Act works is if you have a high deductible, your out of pocket cost is zero. The assumption being you are paying that insurance company so much money, they will that they are going to carry the burden. They will your cost is zero. Yeah. And if you have run of the mill, average, everyday insurance, like most people, your cost is 2020 bucks. So if your copay is 15 bucks, it's 15 it co pays 25 Well, that's, you know, that's that's 25 bucks. Yeah,

Scott Benner 23:54
but there's no situation where it's suddenly $2,000 If you know you're right, if you'd need a ton of it's I'll tell you, I looked at your numbers that you're that you're touting here I have it is as of 2018 1.4 million T one 6.9 million T twos. That's, um, that's astounding. Okay, so now this thing gets written it Listen, what I know about this, you could fit in a thimble, but the way you're explaining it makes sense to me. I have the heart of a liberal person, you know, and I don't think that your healthcare should bankrupt you or or cause you to have to find 1000s of dollars a year that you don't have, right or you know, to go down a different road for a second Rob, even if you come up with the five grand like you said you're taking from somewhere to pay for this, right? And so maybe today it feels like you're getting away from it, or getting away with it, but But How old are you?

Rod Regalado 24:52
I'm 57 Okay, so 57 years

Scott Benner 24:55
old, let's say 20 years from now. Rods not walking so well or not remember things so well and his kids have to put him into some sort of a home. And now because rod wasn't able to save money, he's stuck with a Medicaid or Medicare system. And now he's in a subpar place. And at some point, at some point, this chicken comes home to roost, like you might be able to, like, push it off for a while and get your son his insulin, you know, you or somebody else, but at some point in your life, this is going to make an impact. And I think it's easy for people to think well, like drive a cheaper car, don't smoke cigarettes, you know, whatever your lifestyle choices are, which is, is a reasonable statement. But I'm saying at some point, it comes back to get you 10 years $5,000 $50,000. Yeah, 20 years is $100,000 out of pocket. And just because you can come up with five grand a year, doesn't like my daughter was diagnosed at two. So I mean, hold on a second, I'll do this. I'll play this with you for a second if my daughter is diagnosed at two. And I think they I think that women live to like 84 on the national average. So at two years times $5,000. This is assuming it doesn't go up, which of course it would, in a lifetime, at $5,000. A year at a lifetime. $410,000 at $5,000 a year.

Rod Regalado 26:22
Yeah. And that And that's assuming you don't go to the hospital and suffer DKA. So think about this got. So let's say, because let's face it, one in four Americans one in four every single day rations their insulin because they cannot afford it. And so what happens, they can't afford the insulin. So they go into diabetic ketoacidosis. They take them to the hospital, they treat them for two or three days. And then they discharged him with a 20 or $30,000 invoice, well, they couldn't afford the insulin on the front end. Right. So what makes you think they can afford that invoice you just handed him. And now Now you came up with a half a million dollars basically over a lifetime for insulin, insulin only. Now now add up how many times you have to go see the endocrinologist just for your routine checkups. That's not free,

Scott Benner 27:14
yet doesn't have to be that harsh. He didn't even have to go into DK, what if you're just carrying a heavier a one C than you should be. And when you're 30, you start running into health issues, those health issues are going to cost way more to the system, like so there's no common sense. And I listen, I'm with you. Like I said like I am a I'm a person who looks at things and I try to make sense of them. So if $5,000 a year aggregates out over two to $410,000 $500,000 a year or in a lifetime, and a couple of hospital stays is going to equal that number anyway. Well, then I the only thing I can think of and here's where I want to play devil's advocate for a minute is are the people who pull the strings on this, like, what don't I understand about an economy? Like, I hate to say this, but if people weren't sick, what our economy fold, like are they're like Machiavellian lunatics pulling strings going, listen, some people get sick, they have to buy medicine. And if they do, then that, you know, keeps a pharma company in business. And then pharma company makes advancements and maybe we learn about things. 50 years? Like, I mean, is there like a big picture that I can't wrap my head around?

Rod Regalado 28:32
Oh, no, no, I don't know. I think you're monitoring capsulated perfect. Yeah, it's money. It's funny, because because if it really was about people and lives and the economy in general, if that was a true statement, then then then there's no reason that they can't sell insulin to keep people healthy rather than watch them rational. And there's a reason believe me there is a reason that the manufacturers are offering coupons. There is a reason because because they know, but it's the middlemen again, you're going right I'm going right back to the guys that are pulling the levers. These like you say the Mac of alien dragons that are between the manufacturers and the patients. Those people only care about profits keeping only care about profit and it's a sad day. It's truly a sad day that America has allowed this to manifest itself as it has over the last 1020 years so I could its present. I

Scott Benner 29:36
could sit here broad off the top of my head and I haven't given a deep thought to it but I could sit here and paint you a picture where we need the machine to grind because if the machine grinds we make advancements we learn about different things. You know, if if if there and I am a person who who fundamentally believes that people get up and go to work in the morning to get paid. Yeah, so brilliant people, you know, I mean to I'm going to make a point and then I'm going to come around to it. So if I'm in college, or I'm getting ready to go to college, and I'm a truly brilliant person, and I look at the at the world, and I say, Okay, well, my goal is to make money, let's say, That's my goal. What, what, what form of work am I going to go into where I can do good, exceed my expectations for myself, personally, make a comfortable living, raise my own family, maybe go on a vacation sometime, buy a nice car, you know, save some money, etc, etc, like, chase my dream, and move the world forward. That's just a hopeful thing that a bright person might do that, right. And so and so when you have that person who spends for eight years being educated, you know, a master's and I'm listening, we could make an argument right now that it shouldn't cost hundreds of 1000s of dollars to get quality education like that, but it does. And so I come out of school 345 $100,000 in debt, and now I need to make $200,000 a year at the minimum, or I'm going to be screwed. And this company now needs to pay me because I am the best and the brightest. Someone's got to pay for that everyone needs to make money, the company needs to make money. Like when the machine grinds like that. It does benefit humanity. It doesn't benefit someone at home without insurance who needs insulin. And when I but I have to believe that there's a way to bank the machine grind without grinding people up as its fuel. Like like, Can't there be a there's gotta be a middle ground? And you think Well, Bill does that right? Like it? Fine. They make money still. And we get insulin?

Rod Regalado 31:40
Yes. Yeah, I know, without a shadow of a doubt. And we know this because these manufacturers, here's the interesting thing. We know what manufacturing costs look like? Okay, because these these companies negotiate with the federal government for Medicare, Medicaid, right? We know what, what their, what the manufacturing costs look like. So when you take and I'll just going to throw a random number out there, but it's fairly close. Let's say manufacturing costs plus usual and customary markups. Let's say that number is 20 bucks. And that and that's fairly close. It's probably maybe 22 or 2418, whatever, right? So when that product leaves the factory floor and arrives at the pharmacy, suddenly the price is 600 or $700. Right? Now, I have no problem with these manufacturers making a profit, they have to make a profit because they're going to manufacture new drugs, new, they're going to discover new things that makes humanity better. But when the system's hijacked, as it is now, no one benefits except those middlemen. Now, think about this, Scott. So let's say you, you come from a family where you can go to college, and you can get a master's degree and you have the liberty and your genius, and you can rack up a half a million dollar debt. Think about the kids who come from families like ours, where I don't have the liberty to put away 500 bucks a month. Yeah, so my son, my son is already disadvantaged, because I can't put away that kind of money. Right. So So what about what about those kids that we push them to the side and saying, yeah, sorry. No bad luck for you.

Scott Benner 33:37
Yeah. So I'll make the I'll make the alternative argument, because there's only two of us here. But everyone, as I'm saying this, I don't think this just please, I don't feel this way. Yeah, who says everybody gets to succeed?

Rod Regalado 33:52
Yeah, right. No, it's a fair question. Yeah. Nobody, nobody says, I mean, ultimately, at the end of the day, you truly are responsible for yourself. Yeah, but I believe I believe humanity's generally good I really do I believe that

Scott Benner 34:08
I do too. I think that people generally want good for each other. I do think that there's a study that shows that they want good for each other as long as it doesn't come from them. So there's I forget what the question system is you can ask people like these three questions about what they would give to someone else. And it's a it's interesting like they'd give you no, it has to do with what you have like would you give someone the shirt off your back? Yes, because I have more shirts. Would you give somebody this no because I don't have more of that like there's a there's a way the it listen to read it's got to be a survival instinct right like I can I can part with this and still be okay but I mean I so I don't disagree with you like I think if if some broke ass kid somewhere is brilliant and doesn't have the the opportunity to stretch his his legs and and figure out what he can do in the world. That's a shame. And and it should, it shouldn't be that way. I also think you're going to get hit with people who say, Well, why do you get to tell me how much I charge for the thing I make if you don't like it, start a pharmaceutical company and make your own insulin. That's what we did. Like that. You know what I mean? Like, that's gonna be the, the kosher to some to some real hardcore capitalists, they don't hear I'm rationing my insulin, and I'm sick. And it's going to shorten my life. They here, I started a company, I made a thing. You have no idea what the the risk that I went to, to start this thing. But I could also argue that away and say that these companies have been around so long that the people who put their who put their ass in the game are long gone now.

Rod Regalado 35:44
Right. But you all also have to be aware, and I'm sure you you know this. But one of the things that, and I'm not going to knock the manufacturers I mean, they are running a business. But one of the tricks that they've they've utilized over years past is they change the they change on a molecular level, they'll change the product, so as to extend their patents. And there is a reason why there's only three manufacturers, because because there are no generics. But if you want to talk about the economics of, of manufacturing drugs, that and and I have no problem with patents. I mean, these companies invest billions of dollars to manufacture these drugs. And they should be rewarded for it. But no problem with that.

Scott Benner 36:31
But but some of these Nazi insulins they've made their money a

Rod Regalado 36:34
million times over a million times. Yes, yes. Yeah. It's obscene.

Scott Benner 36:38
And so they're protecting their patents by changing. I do know that they'll they'll change the molecule a little bit to get reprinted. And then that that starts the process over again. Yeah, they'll and then they'll kind of like legacy out the older insulin so it's not available. And now you're now there. Now they hold their they their protect right back now. Right. But yeah, but

Rod Regalado 36:59
just because it's legal, just because it's legal doesn't make it moral, right? Because really, they haven't really changed if they've changed one molecule, right? And you're going to try and tell me that just because you change this tiny little molecule that you should get a patent extension for another? What is it seven years? 10? I don't know. I

Scott Benner 37:18
don't want long enough time to come up with another molecule.

Rod Regalado 37:20
I bet. Plenty of time. Yeah, sure.

Scott Benner 37:23
And so again, arguing the other side of it. It isn't moral. And I really I agree with you like I mean, if obviously, if money. Well see, I also think it's an oversimplification to say money, because I also think they're protecting the business. I think they're trying to stay in business long term. Like, I come from a completely bizarre perspective on this, because I have this podcast and anybody who listens to me knows that my heart and soul is in this and 100%. But my wife also went to college to be a doctor, and for personal reasons, couldn't go to medical school, and got a job at a pharmaceutical company, 21 years old, coming out of college, and is still at a pharmaceutical company, my wife is brilliant. And she and for anyone listening, believe this works her ass into the ground every day. And I know it might be hard to think of like a desk job is hard. My wife's job is intellectually past, intellectually, tasks her in a way that leaves her exhausted every day. Sure, this COVID thing sat in my dining room for 18 hours a day making sure that one of the COVID vaccines was going to be safe. My wife is the kind of person you want, looking at stuff like this, and making decisions like this. And those people are not a dime a dozen. And so you don't I mean, and so in so take all this out of it for a second take out insurance and all the horribleness that this is she's a person who has children, she has a home, she's trying to send her kids to college, she is putting an honest effort into something that she took years to understand. She wants to be compensated for it in a fair way. And she'd like to go on vacation once in a while. And I will show you from a personal perspective. If I had to bet $50 Right now, my wife's going to drop dead at a desk from a heart attack one day and there's no one listening to it. Well, Trump but listen, I'm telling you how how hard the job is and how hard she works and how stressful it is. And my point is that no one is going to remember her and that she's not the only person who does that. So I listen. Is there a CEO at the top of a company whose you know, Third Mistress is driving around in a Maserati that I paid for with insulin? Maybe? Right? Is that good? No, but you can't be mad at my wife about it or people like her who were actually in in the in they're trying to do good if you met those people they are you.

Rod Regalado 39:52
Oh, I know. I have I harbor no illusion about oh, no, I know. And that's and that's the investment. That's the investment that these guys companies make, they see the value of these employees. Because every day they go to work, trying to find some breakthrough. That's their job. That's what they're good at. They're geniuses. They're brilliant. And they can't do that

Scott Benner 40:15
their brains work in a different way. I don't I can't do eight how people like that think and most of us can. I also want to say not that I feel like I have to, but my wife's company doesn't make insulin. So I feel a little unencumbered, like giving a bigger picture from there. But she has worked for a company in the past that does, and then I can tell you that while she worked there having a daughter with type one diabetes, she felt extra fulfilled at her job. Yeah, and, and even moving forward. Now. There are you know, the the workers in pharma companies, they rely on each other. Like, there's, there's these meetings that they have, I don't know enough about them to be thoughtful about them. But my wife is involved in a meeting where like, people from different pharma companies get together and just talk about problems they're having or ideas and try to how to solve things. And the amount of times that I've heard my wife on calls, helping people make better decisions about helping people with diabetes, even there's value in that now, all of this is nice, and it doesn't change what you're saying. And it doesn't make it very true that there's no morality to charging somebody $5,000 a year to stay alive. I'm just trying to paint a picture that the way the world works, is so entangled, that I'm so concerned that pulling one thread, you can't fix anything but I love the idea of what you're trying to do. So my question is is how do we like what happened to the build it stall? What does it need? Why are you here?

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Rod Regalado 44:51
No, the bill has not stalled. Um, but basically so I make I make phone calls every single day every day. And I collaborate with diabetic advocacy groups. Shout out to touch by type one, by the way. And, and I work with these people daily, I make these phone calls and emails daily. And the the challenge that I see all the time is that most, well, virtually all of the time I call a congressional office and they're completely unaware of the bill, you have to understand these people have so much on their plate, their local constituents are calling about this, and that they have their own issues within their district. So they're not necessarily, let's face it, there are 1000s of bills that are introduced every year, these congressmen and senators are not going to know that this bill exists. And that's the challenge. And that's why I reached out to you, Scott, because I don't want this bill to die in the middle of the night. So

Scott Benner 45:57
how do you stop that from happening? Because I'm so scared that what you're gonna say is it's money, but it's maybe it's no, no, no,

Rod Regalado 46:02
no, no, no, no, it's not money. No, no. It money helps. But no, it's not money. No, what all I would ask is for all of your listeners, just take a look at Matt's act, it's 4813. Just look at the bill. See what it does. It's a very simple bill. It's not like most bills that are introduced these days are 1000s of pages long and reams and reams of paper. Mats act as 16 pages only deals with insulin and pricing. And it has safety nets in there to make sure that we're not jobbed and hosed. At some point down the road. There are safety measures in place. And I would just ask that you call your congressman, and ask them to at least look at hr 4813. And look at the merit of the bill. You either like it or don't like it in something my grandfather said to me when I was just a young boy. If my nickname was rabbit, he called me rabbit. He said rabbit, if you don't ask the question, they can't say no. But occasionally, they'll say yes. I'm just asking that people look at the bill, call their congressmen and ask them if they wouldn't mind. CO sponsoring the bill. Now, the one thing I'm hearing from a lot of congressional offices and Senators, is that now we're supporting HR three, which is fine. HR three is a large bill where they want to renegotiate drug pricing, I think it's top 150 drugs or something like that. I don't really know. But what I do know is that these two bills are not mutually exclusive. HR three is fine. But HR three capstar crisis renegotiates drug prices, only as it applies to Medicaid and Medicare.

Scott Benner 47:56
So if someone said that to you, you could say listen, there's no reason you can't support 4813 and three at the same time.

Rod Regalado 48:02
Exactly right. Exactly right. 4813 covers every single insulin dependent American HR three fine idea only applies to you if you're on Medicare or Medicaid. Yeah, in other words, leaves everyone else

Scott Benner 48:19
out. Okay. And it's about more. It's like a top, you said a certain number of drugs, which probably makes it even more difficult to push through.

Rod Regalado 48:27
Right, right. So yeah, and so that was the other thing we looked at. We tried to keep this thing as streamlined as possible. Only insulin. There are no writers on this thing. There are no backdoor deals. There's it's a very simple read. It's 16 pages.

Scott Benner 48:42
So can I ask you one? Can I ask you a like an inside baseball question about the policy? The political side of this is? Sure. Are there enough? Congressmen, Congress people, Congress, women, Congress, this congress people? Yeah. What happens when you get old rocks? Are there enough? Are there enough congress people who don't take money from Pharmo? Who would feel okay, putting their name on this?

Rod Regalado 49:08
Oh, that's an interesting question. Um, well, I can tell you this. I can tell you this. So the it maybe you know, this, maybe you don't, the largest the single largest caucus in Capitol in the nation's capitol. Is the congressional diabetes caucus. Yeah, it is the single largest caucus in in Washington, DC, over 300 members of the House are part of that caucus. So they might be taking money from big pharma and insurance industry. PBMs. Who knows?

Scott Benner 49:48
Yeah, they all have to have a lot. I mean, the PBMs have to have a lobbyist on top of lobbyists. You would think of course they do. They ran out of money. So

Rod Regalado 49:56
yeah, they got to protect that. That goose that laid the golden egg they got to protect But my point is 300 plus members are in the diabetes caucus. And I would suggest they don't know about the bill, because I will give them the benefit of the doubt. They just don't know about the bill. But if they did know about the bill, maybe just maybe they'll say, yes.

Scott Benner 50:20
I'm kind of hoping that a handful of attorneys who do lobbying work have kids with type one diabetes are listening. Yeah, I mean, I think that's, I mean, I hate to say that, but I think the way that Washington is set up is this is it, right? Like, you know, what you see on the news is what happens at the very end, it's how, you know, it's been scrubbed 1000 times, the way it gets scrubbed, is by is by powerful people who represent more people. Yeah, of usually of power, getting together in a room and making a decision. And then then they're telling these congress people, this one's okay to vote for this one isn't like, yeah, that's

Rod Regalado 50:56
that. Yeah, that's exactly true. That that is, that is a sad reality of Washington, DC it is. But I think there's enough people of goodwill in, in the Congress that would look at this and say, you know, I like this, and I can also share this with you. The, the leadership, the Democratic leadership, they presented this bill to them last year, and they liked the bill. They did like it. But, you know, we're fighting COVID, the election, the Trump impeachment, the, you know, all sorts of nonsense was going on, and it was just lost in the ether. Um, but now things have calmed down somewhat. depends on your perspective, I suppose. But, but I think now is a is a perfect time to resurrect this and just say, Listen, there's 300 of you guys that are part of the diabetes caucus. And where have you been for the last 20 years when the price went through the roof?

Scott Benner 51:57
So maybe the caucus? Is it possible that the caucus isn't focused on the same things that you wish they were?

Rod Regalado 52:03
Yes, yeah. Yeah, absolutely. Yeah, absolutely true. So

Scott Benner 52:08
is it is the is the real hope here that everyone listening calls their congressperson and just simply says, I would like you to can take a look at hr 4813. It's called Matt's act. It's about making insulin affordable for people. It's a very simple bill 16 pages, take your five minutes to read it. This would mean a lot to my family, give them a half a second, a personal like, my son has type one, my daughter as type one, we're afraid we're not gonna be able to send our kids to college, we're afraid we're not going to be able to retire. We're afraid that we're going to die one day and our kids aren't going to be able to take care of themselves, whatever your truth is, share that with them. And just reiterate, please take a look at 4813

Rod Regalado 52:51
That's all I'm asking. That's all I'm asking. You know, and and I can I can I plug up a website. I created a Facebook group I started Yeah, sure. Good. Yeah. So so you can find us at insulin matters that calm. So it's www dot insulin dash matters calm, or the Facebook group under the same name, insulin matters. And I do have a letter that I posted on there, you can just download it, click on this link, it'll give you just plug in your zip code. And based on that zip code, it'll tell you who your congressman is. And you send that letter off and you can wordsmith it any way you like. But more than anything, just call your congressman and ask them to support 4813. And if they push back and say, Well, we're supporting HR three, just point out they're not mutually exclusive. They truly aren't.

Scott Benner 53:51
Right? Insulin matters. Ma TT ers.com That's it when I get there. Am I seeing blue and gray? Yeah, welcome to insulin matters a practical approach to Basal insulin management. Oh, no, no, no. What am I Sir

Rod Regalado 54:06
It's insulin matters be the difference.

Scott Benner 54:09
Insulin matters

Rod Regalado 54:11
Yeah, it'll it should pop up. Let me just see like the insulin different insulin douche matters. Calm the dash. That's yeah, little dash in there.

Scott Benner 54:21
Everybody rods in his 50s he don't know. I'm just trying to help

Rod Regalado 54:25
you. I'm a dinosaur. I'm a dinosaur.

Scott Benner 54:28
Alright, now I'm here. Insulin dash matters.com Yeah, that sounds Yeah, we need you need a tiny bit of a media prep there rod don't you? You spent this whole hour doing such a good job. Explain that you send us your website for insulin. Yeah, no. Don't worry about insulin dash matters calm as soon as it pops up. There's a cute kid here and it says support Bill HR for 13 Mad sack right at the top. Okay, so And there, I'm going to learn how to what do I click on to figure out how to find your letter?

Rod Regalado 55:07
Yeah. So if you scroll down just a little bit, probably about the middle of the body of the

Scott Benner 55:11
page. I say it man attack letter and find your representative.

Rod Regalado 55:15
Yep. And that's it. Okay. It's was that Yeah. All right, right. So yeah, I mean, I'm not truly I'm not looking for money. I'm not the letter and a phone call means way more to me, simply because that's how I got a bill. I made a phone call. And I don't I don't have any rich uncle's. I don't know, famous people. I don't know, my congressman. I simply made a phone call.

Scott Benner 55:39
Right. Let me ask you something just for clarity. Excuse me, I believe I know. Oh, I'm dying. This is the end. Let me get a sip. My tea guy called messed everything up. Um, you're not you're not making an income off of this. Right?

Rod Regalado 55:54
Nothing? Not a penny. Nothing. Absolutely nothing. It's

Scott Benner 55:56
just It's I don't believe you are. But I did see a donate button. So I just wanted you to be Yeah, people. So yeah,

Rod Regalado 56:03
right. Right. Well, the intention. Yeah, the intention is to whatever donations come in. Um, when I'm going to do with it is I'm going to buy ad space on like Facebook and Spotify just to promote the bill, just like 15 Second 32nd ad space, that nothing more than that. And if the bill makes it through, then I'm just going to donate the rest of the money to some, you know, 501 c three that gives out insulin or insulin. ancillaries. And there you go.

Scott Benner 56:36
Cool. Well, I appreciate you coming on and talking. Is there anything that we haven't talked about that you think we should have?

Rod Regalado 56:42
Oh, no, nothing comes to mind. I

Scott Benner 56:48
do a good job of arguing the other side without sounding like,

Rod Regalado 56:52
you know, what is that? You know, that's truly a lost art, Scott, you know, people, people can have disagreements, and they don't have to be so disagreeable. You've got your personal opinion, I got my personal opinion. You know, there's always middle ground. And there's I love I love having conversations, where I can disagree with someone, I can illustrate my point of view and illustrate your point of view. I think conversation is so fun. Yes, I

Scott Benner 57:17
enjoy talking. I also didn't like I mean, listen, I agree with a lot of the stuff you said. So I was I have a lot of arguments to be honest with you. But I do know that people could hear it and feel that way. And I think it's important not to disregard that. That's how people feel like, I know that you can take a moral high ground and say, Look, we're talking about insulin is people's health, money shouldn't matter. Well, that's all well and good. But you know, what matters to all the people who are making a living and feeding their kids off of the stuff that they're selling like? So you. What I am always reminded of is, is that there are a number of people who have contacted me over the years. And sometimes they want to come on the podcast talk about this. There's one person that sticks out in my mind. And this person, you know, I spoke to them on the phone, and I said, but you want to come on the podcast, what about? Well, in some pricings not fair. And I was like, oh, it's not like you have a fix for it. And she's, she says yes, you know, they should make it cheaper. And I was like, well, that doesn't sound very reasonable. You're going to go to a bunch of wealthy board members of a company and tell them to give their stuff away for less money, right? Like, is that how things have? You've noticed them working so far in your lifetime? You know, asking people about their better angels is. I mean, that's, I mean, I saw her in Brockovich. But other than that, I haven't seen it happen anywhere else, you know, in my life. Yeah, you're

Rod Regalado 58:34
exactly right. Yeah, there's one thing to bring a problem to the table. But if you have a problem, bring a solution, or at least bring an idea. Yeah. And this

Scott Benner 58:43
person then told me that it was listen, at its base, I understood that the context, they said, well, they spend so much money on advertising to get us to buy their products. And I was like, okay, and I was like, let me see where this is going. So if they just got rid of their public relations department and stopped buying ads, they could put that money towards the the cost the incident, I said, Well, that makes sense. I said, What do all the people do who work in their public relations department when they fire them? And they can't pay their bills anymore? Like, what if some of those people have diabetes, and now they can't afford their insulin? And I was like, are we just taking the money from here and putting it over there? Is it like Robin Hood, you know, stole from the rich and gave to the poor? And I know that that's what you think you're doing except the people who run the company aren't going to lose a nickel. When this happens. They're going to fire the guy that fixes the copier. You know what I mean? Like, that's the money doesn't just they don't give the money away. The money comes from somewhere. So your idea in a perfect world sounds delightful. But that isn't how it would end up working.

Rod Regalado 59:49
So utopian idea. Yeah, no.

Scott Benner 59:51
So if you're going to come at these problems, it's just my intention to say come at them with a real answer. And and to me, yours yours comes close. Because, I mean, there's can't be anybody in the world that has a soft spot for a pharmacy benefits manager. Except Except I gotta say, the pharmacy benefits manager who probably enjoys the island they live on. And which is, by the way, how I don't know if I've ever said this in the podcast. That's how I think of Pharmacy Benefits managers as big fat people sitting on an island at the top of a throne. laughing as the pennies that they take out of your dollars just keep falling into a pile. Yeah, it's

Rod Regalado 1:00:32
Yeah, yeah. It's hard. It's hard to say because you have to pull the curtain back to see what they look like. Yeah. Because they they are some shadowy characters.

Scott Benner 1:00:41
Well, I'm just saying that's how my mind mission Yeah, right on the same page got same page. But my expectation is, is that if I was a big, fat slob and leave rich person who was taken pennies out of out of sick people's pockets, left and right, I wouldn't care much about them. Because if I was I wouldn't have gotten to this space to begin with. So now we're about to have a formidable fight with a person who does not want to lose has a lot of incentive not to lose, and doesn't particularly care how they win is what That's right. Lactation,

Rod Regalado 1:01:12
you know, you know, you're exactly right. And that fight will come. I harbored no illusion, I know that fight will come. They will bring the big dogs, the lobbyists, the lawyers, the character assassins, they will all come knocking. sure of it. Well,

Scott Benner 1:01:29
I applaud you for one to be in front of that. Because I think that of all of the things that you just described that it can be scary that the character assassinations are so common in in, I mean, now that the internet's here, just so easy to just make up a lie about somebody, right? And so to want to be out in front of that is really brave, maybe you're not knowing what to put the dash in your URL is just just the amount of ignorance you need to get into this fight.

Rod Regalado 1:01:56
You know, I'm an old Marine, I am an old Marine. And really, I don't care. I'm too old in my life. And this isn't about me. Yeah, this, it was about Matthew. And now you know, it's about 8 million Americans, they can character assassinate me all they want. I don't care. If they can't kill me an evening,

Scott Benner 1:02:19
I can't yet I appreciate so much that you're that you're willing to do this and that you try this. I have to imagine that there was a moment, the beginning of where you just thought like, well, this isn't what I wanted. Like, I don't like I mean, this wasn't something you were looking to do, right?

Rod Regalado 1:02:31
It No, no, no, no, not at all. No looking back. Exactly. Yeah, but you know, you know, diabetes is an equal opportunity hater. It doesn't care. If you're on the right side of the aisle or the left side, it doesn't care if you're black or white. It doesn't care if you're rich or poor. Or if you're Jewish, or you're Catholic. It does not care. And it will make your life miserable. But it'll break you financially and emotionally. First,

Scott Benner 1:03:03
I have to ask you, this whole thing you want people to do make a phone call, send a letter? How much do you think of their time takes them to to accomplish that? Less than an hour? No, oh,

Rod Regalado 1:03:12
God, no, no. 15 minutes, 15 minutes to download the letter. It'll take you a couple of clicks. On the long end, it might take five minutes, okay to make a phone call. And I would just encourage your listeners. If you download the letter, ask him for a response. Ask them to call you back and tell you why they don't want to support the bill. Okay, I put him on the spot. Absolutely. I don't I don't want to shame any of those congressmen or senators. I don't want to shame them. I just want a fair hearing. Yeah, this is America give us a fair hearing.

Scott Benner 1:03:47
I think you'd be surprised to how little it takes to make something look like a wave. I say stuff like this all the time. And I don't know if people believe me or not. But honestly, if everyone who heard this did it, it would actually make an impact. The problem is, is that you're not going to do it. Not not in you know, I mean, listen, as a person who gets on here and says, Hey, if you want to support the podcast, you know, go go to here and just fill out this survey. For me. It's a survey that doesn't ask super personal questions. It's HIPAA compliant. Like I tell people all the time, you'll really support the podcast, and it'll take you 10 minutes. And it's surprising how often you have to say that just to get a small number of people to do it. You

Rod Regalado 1:04:30
know, it's not surprising to me at all. It truly Scott I literally every single day. So I work all day. I come home, they can dinner, maybe the laundry in and I jumped on the computer and I'll do a little bit of work. When am I driving home? I'll call this congressman or that Congressman. I call famous people I might make literally, I might make 50 phone calls. And I'll get two people to call me back. Right?

Scott Benner 1:04:58
Well, yeah, that's it. Listen, if you're, you know, if you're making that phone call, just tell people tell them say, look, I heard about it on a podcast, because they might you don't know like that, that feels very viral to people. And you know, you could give them the feeling of like, Oh, these we got to get out in front of this before more people call like, I want to be on the right. Because I mean, they're politicians, right? They just want to be on the right side of the argument. And for them the right side is you being happy. So you vote for them. It's

Rod Regalado 1:05:25
right. And let's face this got this is the right thing. Yeah. I mean,

Scott Benner 1:05:30
it has the added benefit of actually being a good thing

Rod Regalado 1:05:33
is a good thing. Yeah. There's, it's no coincidence that 300 Plus members of Congress are part of the congressional diabetes caucus, right? It's no coincidence. Now. It's time for them to do something.

Scott Benner 1:05:47
Do you know how many people you have signed on to Matt's acts so far? To two okay. And then what do you need to push it forward? Do you think

Rod Regalado 1:05:56
we need yes, we need a hearing. So the way the bill way a bill works, it's introduced, oftentimes, it's introduced by just one congressman, our bill is bipartisan. We have Angie Craig is our co sponsor, Democrat. Fortenberry is, is the author of the bill Republican. So the way it works is it has to go through a hearing a committee hearing, and in our case, it has to go through energy and commerce. And I know that sounds kind of weird, but it's energy and commerce because of interstate logs. Interstate Commerce loans. So once it goes through that hearing that committee, they'll vote it up or down. If they if they voted up, then it goes to the Health Committee, and the health committee will vote it up or down. And then once that happens, then it goes to the floor for a vote on the House floor. Yeah. After that, then it goes to the Senate. And the same thing happens to

Scott Benner 1:06:54
wow, okay, well, yeah, listen, it sounds like an uphill battle. But I appreciate that, when you're willing to fight. I hope that you're, you know, normally talk to people about their diabetes. So I hope your son's doing well.

Rod Regalado 1:07:06
He has thanks for asking.

Scott Benner 1:07:08
And was it a big? I mean, have you made the, you know, the adjustment, or is it still hard for you the diabetes?

Rod Regalado 1:07:16
Yeah, well, I'll tell you, man, you know, out of the gate, it was hard for us to find our sea legs is such everything was just kind of upside down, counting carbs and measuring. And, you know, we, we found our pace and so now it's almost second nature. You know, Matt, last night we had the pot roast and mashed potatoes and homemade mashed potatoes and gravy and, and we just know, okay, that dollop of mashed potatoes has X number of carbs in it, and he just knows off the top of his head, how many units he has to take so so it's actually a lot easier. But the the I've noticed recently the one thing that he's struggling with is emotionally it's difficult because you know, he's an athlete, he loves playing sports and he couldn't wear he couldn't want to pump so can't play football where pump had couldn't wear his Dexcom sensor because football the rip that thing off. So back to finger sticks. And, and it's just the whole sports thing, just

Scott Benner 1:08:26
right, you should jump on, you should drop on to my private Facebook group and talk to people there because there are wraps that you can put around Dexcom that make it almost impossible for them to be grabbed and ripped off. There are people playing football with them. And you could he could move to an insulin pump that's tubeless that might do similar things like that make things easier for him. So there's they're sometimes they're not that I'm not disregarding anything you just said. But I don't think you should give up. I think you should just ask other people how they do it because it is giving it I will Yeah,

Rod Regalado 1:08:58
I will. I will. It really took a toll on me. Yeah, he struggled with that. He struggled with

Scott Benner 1:09:03
that. So can imagine. Oh, it's terrible. I'm so sorry. Any other autoimmune in your family?

Rod Regalado 1:09:10
No feeling no thyroid? That kind of snow? Nothing? No, no, we're just old English, Irish, Dutch, Indian. You know, typical American mutts

Scott Benner 1:09:24
English Irish. There's a lot of I see a lot of autoimmune. We and people. English Irish. Yeah, that say that. That's their background. There's a big swath of Nordic people in Minnesota who who are impacted my wife's lineage is Irish English. Like I think there's something to that. I think taking the potatoes from those people for that long really messed them up or making me sorry, I'm sorry, making them eat potatoes for that

Rod Regalado 1:09:47
long. It could be truth. Brought Listen, I'm not a doctor. It could be the solution to my weight problem.

Scott Benner 1:09:56
Get those potatoes out of your diet. Well, I I just can't tell you how much I appreciate this or how well I thought you articulated this the the whole thing today, I really do appreciate your time.

Rod Regalado 1:10:07
Well, Scott, you know, I, again, I can't thank you enough for you know, lending me your megaphone, because without without folks like you, this message just doesn't get out. People don't know what they don't know. And it's not their fault. It's not because they're ignoring us. They just don't know. Yeah. So for what it's worth, Thanks for lending me the soapbox and your megaphone. And

Scott Benner 1:10:30
it's my pleasure, I would I would add this for anybody listening who's who's, you know, thinking about doing this is if you're listening and you really don't feel like this impacts you, right? I have insurance, I pay $20 a month, I don't even know how much insurance or insulin cost whatever it is, you're thinking, you know, right now, it doesn't hurt you. It's no skin off, you're asked to make this phone call. You know what I mean? Like, just send the letter, make the phone call, push people in that direction, you know, you'll feel good about yourself. At the very least you'll do something good, which is a bonus. And because I know how hard it is to take these earphones out now and be focused on something when your life is difficult. That doesn't impact you. But man, it could one day, uh, you know, just because you're successful doesn't mean your kid's gonna be, you know, bit when Billy's 35. And you're in a home and he doesn't have a good job. You might wish you sent this letter, you know? Because this isn't going to get better on its own. Like, I am a firm believer in capitalism. I don't think there's anything wrong with it. But this is the other side of that, which is you. It is hard to make change around stuff like this. And it really isn't. It really isn't going to happen until people get together in a group. And it I mean, look at the number what's the number how many people use insulin,

Rod Regalado 1:11:43
about seven and a half million, seven and a half million every single day. And one in four rations? Yeah, every day.

Scott Benner 1:11:50
So if you want to see the power of democracy, you put seven and a half million people send them a letter or making a phone call. And instead we'll be free tomorrow. Yeah, that's, that's yeah, that's the truth. It'll be it'll be affordable. Put

Rod Regalado 1:12:03
it that way. Yeah, right. Yeah. Free. Nothing's really affordable. And and you can afford the college fund and retirement fund. Yeah. Wouldn't it be nice to know when was the last time you gave yourself a $5,000? Well, let's say let's say you have a high Well, let's say you have regular insurance. 20 bucks a month. So now you're spending $240 a year as opposed to maybe, I don't know. 2000? was the last time you gave yourself a raise of couple 1000 bucks.

Scott Benner 1:12:31
Yeah, I think the problem is, is that I think part of how the part of the problem about how people think about money is because we're segmented into months. And because if you I make this much money, and this percentage of my money goes out the door, and this is what I expect. No one ever does the you know, I mean, like, Let's take something that everybody has the cell phone, right? So you know, how many kids are in your family? Right?

Rod Regalado 1:12:56
Two, and then two plus a foreign exchange student so I got three. How

Scott Benner 1:13:00
many cell phones? Are you paying for a month? Oh, four, four. Do you have any idea what your cell phone bill was?

Rod Regalado 1:13:07
Oh, God. Ah, I don't because it comes right out. Um, I would suspect it's a couple 100 bucks. Yeah, my God. Yeah.

Scott Benner 1:13:13
So that's one of those things. Let's just say you're you have a I don't know, the two or $300 bill, it doesn't matter what it is. You pay $300 a month. He's like, Oh, I can afford that. That's fine. And then every year it's $3,600. And God, it's only $3,600 not really a big deal. I can come up with $3,600 a year. Don't worry about it. It's really important to me. 10 years of that $36,000.10 years. Oh, that feels like a lifetime. Do people even live 10 years? Yeah. Well, turns out they do. You know, so you start etha saying 36,000 for 10 years? Well, you know, 72,000 for 20 years 150,000 for, you know, for 40 years. And so suddenly,

Rod Regalado 1:13:54
there's a lot of money, you're talking about real money

Scott Benner 1:13:57
could be putting away. So my point is, is that we don't think about money the right way. Because we think about it. It's like oh, it's only $300 I have to come up with this month. But it's $150,000 You have to come up with over the next 40 years. And you will be alive most likely for 40 years.

Rod Regalado 1:14:12
And then how many of your kids could you put through college without Oh, or or?

Scott Benner 1:14:17
Or any number of things? How many how many of you are walking around right now wishing you could spend five grand on refurbishing a bathroom or you need a car that you've been? You've been driving a car 10 years too long that you drive down the road? You think the wheels gonna fall off and you're going to go crashing into a tree? How many different things do you miss? I mean, I agree with you man. Insulin shouldn't be one of the things that's causing you not to have something else or have and the health side of it. Like I really feel like we didn't dig into it enough. But if people are rationing insulin even a little bit, it's such a it's just such a right you know, right

Rod Regalado 1:14:52
right. So so the physical, the physical health aspects of it are devastating. But if you're one of those One in four Americans, let's just call it let's call it 1.5 million, just 1.5 million. So 1.5 million people rationed in this country every single day, because can't afford it. Right. So that implies if they can't afford the insulin, they probably can't afford to pay some bills here or some bills there. And so now you have this effect, whereby their mental health takes a hit. Yeah, so depression rolls in. Anxiety is part of your daily life. And now you're living with depression. And now you've got all of these things, coalescing at the same time.

Scott Benner 1:15:35
And I'll finish with saying that those people are generally speaking, not the people who have time to listen to a podcast about diabetes. Yeah, right. You're listening, you're probably lucky to begin with, even if you don't know it. And so take a minute and stick up for those people who aren't even lucky enough to have a job or a life where they can put some expensive headphones in their ears and listen to me prattle on for what is now an hour and 12 minutes with Rod. Because most people's lives don't even allow for this kind of stuff. And those are the people you're sticking up for, if not for yourself, so that's how I'll leave that. Alright, Ronnie, he did a good thing here today. I hope it helps. Yeah,

Rod Regalado 1:16:16
I You did you did your wonderful. Oh,

Scott Benner 1:16:19
yeah. You're You're being too nice. We don't know if it helps or not yet. Get it out there and find out.

Rod Regalado 1:16:24
I'm an optimist. I'm an optimist. You

Scott Benner 1:16:26
certainly I got it. It'll go yeah, you wouldn't be in this fight. If you weren't optimistic. That's for sure.

Rod Regalado 1:16:31
That's true. Well, listen up. Well, Scott, and thanks again for inviting me out. I truly appreciate the chat this morning.

Scott Benner 1:16:39
My pleasure insulin dash matters.com.

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kaipa pen at G folk glucagon.com forward slash juicebox. You spell that g VOKEGL. You see ag o n.com. Forward slash juicebox. And also like to thank the Contour Next One blood glucose meter and remind you that everything you need to know is that contour next one.com forward slash juicebox. And of course, don't forget the T one D exchange T one D exchange.org. Forward slash juicebox. Go take that survey. I want to thank you guys for listening and for supporting the show and remind you that I'll be back soon with another episode. If you're enjoying this episode or the podcast in general, please share it with someone who you think might also enjoy it. Thank you so much. I really appreciate it. Your generosity and your support helped the podcast to grow every day. No kidding. Every day for the last six months. The podcast has had more downloads in the current month than it did in the previous one. That is because you're sharing the podcast. Thank you very, very much. I can't I honestly I could sit here and say thank you all night I wouldn't be able to say thank you enough.


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