Scott Benner 1/13/23 Scott Benner 1/13/23

#826 Defining Diabetes: Meet the Need

Scott and Jenny Smith define diabetes terms In this Defining Diabetes episode, Scott and Jenny define Meet The Need.

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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 826 of the Juicebox Podcast

Hey in this episode of defining diabetes Jenny Smith and I are going to define meet the need. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. If you're enjoying Jenny and you'd like to hire her, you can she works at integrated diabetes.com. Are you a US citizen 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 survey when you complete the survey. You have helped somebody living with diabetes, you're moving diabetes research forward and you may just help yourself T one D exchange.org. Forward slash juicebox. I have an unprecedented amount of time before the music stops. Let me just tell you, thank you for listening to the show. And if you're really enjoying it, leave a beautiful five star review and a rating wherever you listen. Great reviews help other people to find the show.

If you're looking for a New Year's resolution that's achievable. Listen to a Juicebox Podcast series. If you're newly diagnosed, find the bulb beginning series. Trying to understand what all these words mean. Defining diabetes has over 50 episodes at this point, you're listening to one right now. And if you're really ready to dig in the diabetes Pro Tip series is the way to go. You can subscribe or follow the show for free on Apple podcasts, Spotify, Amazon music or wherever you get your audio even audible. Melissa says Pro Tip series set us on our desired path from the very beginning from a 12.9 a one C A diagnosis to a 5.2 in one year with no honeymoon. You can find the series and more at juicebox podcast.com Right at the top in the menu. Or you can go in the audio app you're listening in and just do a search Juicebox Podcast bald beginnings to finding diabetes, diabetes pro tip or how about the diabetes variable series, you think you know what's impacting your blood sugar, maybe you don't completely understand the diabetes variable series will help you to there's a mental wellness series defining thyroid, a collection of episodes about algorithm pumping. And don't forget the afterdark series where people tell stories that most won't share. And finally, if you're looking for support, or community, the Juicebox Podcast private Facebook group is absolutely free, has over 32,000 members. And it's just waiting there for you so much good information, you can dive in and talk or just kind of sit back and watch whenever you need. That group has it. This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod five, and Omni pod dash. Learn more and get started today at Omni pod.com forward slash juice box, you may be eligible for a free 30 day trial of the Omni pod dash. Hey, Jenny, how are you?

Jennifer Smith, CDE 3:38
I'm good. How are you? Scott? I'm

Scott Benner 3:39
excellent. I'm excited to be here with you today to define, I think a phrase I made up, but it's still an idea that that um, everybody needs to know about meet the need. And I make up those words. I would expect that you did. Okay. All right. I think it needs to be defined because far too frequently. I mean, I think there's a couple of ways people get to it. But the way I see them get to it mostly is there's an idea in some people's heads that there's an amount of insulin that's the right amount of insulin and there's an amount of insulin, it's too much insulin. And instead of meeting the need that their body is, is is expressing asking for Yeah, it's asking for, they say things like well, I don't know anybody else who has a Basal that high or you know, doesn't doesn't five units or 10 units sound like too much and. Right, right. And to that I always respond to you just you need to meet the need. So

Jennifer Smith, CDE 4:42
and I think the interesting thing about that, and defining it in the way that you've defined it just meet the need. I think people will find it very valuable to listen when we do talk about the math.

Scott Benner 4:55
Yeah, right. Well, don't you always Well, I get a lot of notes like this, I just had one the other day from this guy. And he says, we moved my son, I think, I think it was a son doesn't matter. I moved my kid from on the pod dash to Omni pod five, but it's not working. And right away, it's like, it's it's not working, the thing doesn't work, you know, the dang machine doesn't do what they said. And and so I go back and forth with him a couple of times and messages, it must be it must be irritating to message with me because I asked leading questions that I need the answer to and I want you to think about, I don't actually tell you anything if we're talking to each other. So I asked him a couple of questions. And I said, I said, you know, what, what were your, like, average blood sugar's like in the past, you know, where were you sitting stable, and the kid wasn't sitting stable. Like, I'm not saying you have to be at all the time, but the kid was like 90 and 100 120 130. So already, I'm saying, Okay, sounds like there's not enough insulin. And then I asked a couple more questions. And it turns out that there's a lot of corrections throughout the day. So insulin that the kids not getting through carb ratio and not getting through Basal. They're coming in and pouring in extra. And that's when I said to him, I don't know if it's your basil. I don't know if it's your carb ratio, or both. But you are not meeting the need of either of those most likely, right? You're using a lot of extra insulin. You need to get that into, into your settings. Right. Right. And so he's meeting the need. Almost he was almost getting there. But he didn't know he was doing it.

Jennifer Smith, CDE 6:38
He was doing it by adding instead of having the system learn and deliver the amounts that were actually needed. Right, and you can, you can certainly continue to do it that way. It's just more work. It's more work following things and giving all of these adjustments and corrections and things along the course of of time. Corrections should really be not as frequent. Because if you are getting the right amount, whether it's from an automated system, or from just a manual dosing strategy, whether pumper MDI, right, the background needs to cover enough, and then the Bolus is the main reason really, for bolusing is for the most part around food. Yeah, it's carbs, right. So if that is keeping your glucose in the target range that you are aiming for, then your Bolus is meeting your need, because you shouldn't after that have to add a heck of a lot or any correction to get that Bolus to bring you back to your target. If however, you're adding adding, adding and that's just your regular routine every single day, you're constantly micromanaging. There's missing insulin,

Scott Benner 7:52
you and I think a lot of people find themselves in this position where they're like, Well, I don't know, I made my basil point nine five, because, you know, 1.1 like, I can't believe my basil is over one unit an hour. But it's just it's, I don't It's not ego, but it's it's this idea of like, it's embarrassment, maybe like, I'll I use too much insulin, you're not you if it's 1.1 an hour, it's 1.1 an hour, it's not too much insulin, I think carb ratio, the same thing here. People say all the time. Oh my God, my carb ratio. Oh, it's one unit for you know, one unit covers eight carbs. It's terrible. Like I'm like, It's not terrible. That's what happens. Now, maybe maybe your maybe your style of eating is meat that needs that right like so there's an there's another conversation there. If you wanted to eat lower carb or better foods or something like that, maybe your carb ratio would change. But in the moment, it's one to eight artists artists, an 18 year old kid who's in college, Arden's carb ratio is during the daytime. One unit covers four and a half carbs. Okay, so And there's still times where I'm like, oh, geez, that wasn't enough. We need more I'm not embarrassed by it. Because why because art is a one see, even when she went away to college was in the low sixes in and and so we're meeting her need now. Same thing with basil. Same thing with everything, your carb ratio, your adjustments, but it can also, I also think of meet the need, in what I guess would be 180 degrees different way. Meaning if you're low all the time, you're you're not meeting the need, you're exceeding the need. Correct. Right. So in my mind, I haven't said this a long time probably since we made the Pro Tip series but in my mind, I think of a stable line on a graph as possible. If you're if you're Basil is right, you can keep stable. There are other variables that are going to try to derail you and you may not keep stable but there is theoretically out there and amount of insulin minute to me In an hour to hour that would keep you stable whether you were sitting, standing running, eating a cheeseburger or having whatever Jenny eats. I mean, whatever healthy thing she eats. I don't even know how to guess at what your needs, and she's told me what she eats, and I still can't get strawberry

Jennifer Smith, CDE 10:16
bites my chia pudding. Yeah, exactly.

Scott Benner 10:20
So, so no matter what you're doing. Alright, listen, if you're managing yourself as an adult, or child or anywhere in between, if you're managing this insulin thing with an insulin pump, or you're doing MDI, where you're just looking for things to be easier, I think you should check out the Omni pod five, Omni pod five talks to your CGM, and it sees your blood sugar rising or falling, and it makes adjustments to your insulin automatically an algorithm, an algorithm based pump that's trying its best to keep you stable. It's amazing, the technology is insane. And if you're struggling, or just want to step back a little bit on the pod five really could be the way to go for you. You can learn more at Omni pod.com forward slash juice box. Now if you don't want automation, you can still get to Bliss wireless with Omni pod with the Omni pod Dash. And as a matter of fact, you may be eligible for a free 30 day trial of the Omni pod dash and that is something you can find out at my link omnipod.com forward slash juice box. Ali pot five is the only tubeless automated insulin delivery system that integrates with the Dexcom G six CGM, and it uses smart adjust technology to automatically adjust your insulin delivery every five minutes, which helps to protect you against highs and lows without multiple daily injections. For full safety risk information and free trial terms and conditions. You can also visit my link Omni pod.com forward slash juice box. My daughter has been using an omni pod every day since she was four years old, I think you're gonna love it. Now, is it possible for you to do that manually, it's obviously would take most of your life. But with these algorithms, you know, getting better and more plentiful. We're all going to be in that situation someday, you know, where you're going to have stable lines that are lower, you're gonna have some spikes around missed meals, and maybe we'll exercise and get low. But for the most part, the stability away from variables is going to be something else because that algorithm is constantly meeting and re meeting the changing need no matter which way it goes. So can you do that on your own? You can I did it for years, it was a lot of work. But it was doable. And to be honest, I found a rhythm with it. And at some point became less work than you might think. Anyway, you just there's an amount of insulin you need. And don't be embarrassed by it and just do it. And don't don't continue to look at low blood sugars over and over again and go I don't know what's happening.

Jennifer Smith, CDE 13:02
You got your high blood sugar's I mean, when you talk about stability, I think it also requires you to talk about where are you looking to stay stable. Because as you say, Basil alone should hold you stable when there's nothing else in the picture, whether it's food, or stress, or exercise or illness or whatever it might be, your Basal should hold you pretty stable, if it's at the right dose. And that stability, again, should be where you want to be sitting. If you want to be sitting at a 90 blood sugar. Your last Bolus should let you sit there and basil should carry you on as many hours at that 90 to 100 place as you want to be. Again, if you're running, you know I'm comfortable at 120 Okay, then you're a little less. Yeah, hold you there at 120. Right. And you might need 40 units of Basal insulin to hold you at 120 Where somebody else at 120 only needs 18 units of Basal insulin again. So you have to meet your need. Yes.

Scott Benner 14:08
Right. And don't match yourself to anyone else. Like no, no, just I mean, yeah, it's just it's gonna be different for you. Your variables are different. Arden is a different person. When she's home from college than she is when she's she's more active at college. She's up on a schedule. She you know, here last night, for the love of God. I think she went to bed at five o'clock in the morning. I think I walked in there and what are you doing?

Jennifer Smith, CDE 14:34
I know you're 18 But you still need sleep?

Scott Benner 14:36
What are you doing? She was waking me up tomorrow at 10 I was like, how do you think that's gonna happen? That's not gonna I 10 o'clock on my garden. Get up. Get up, aren't I Okay, take another hour. But yeah, I mean, it's just it's very important. It's very important. Technically, meet the need, and it's very important emotionally. And you got to just find a way to let yourself go. Like, I mean, don't get me wrong. If you're in a situation where you have like massive problems and you're using weight, you know what, like so much insulin like I can't even like make my pump last three days or whatever. Maybe you get to talk to your doctor about pairing another drug with it to help you. I'm talking about, you know, generally speaking for most people who are in an average situation, right? Yeah, absolutely. That makes sense to, is that the talk around that, because it's very important, but it's without its without context in the diabetes world. Like, if you don't listen to this podcast, very few people are going to talk to you like this, you know?

Jennifer Smith, CDE 15:38
Absolutely. Oh, absolutely. Most people don't even understand. They don't understand the variable nature of insulin at all. It's the reason that most people are like, Oh, you're on a pump. That just does it. All right,

Scott Benner 15:52
magic pump. Well, listen, even with ice. I paid specific attention to Arden's stuff overnight, because we just switched her to a different version of loop. And so I wanted to just be on making sure everything's going the way I expect. And you can see overnight that even though you're you say to, you're telling the loop, like look, this is your insulin sensitivity, and this is your Basal rate. But the loop still for many hours overnight, it's like hey, I'm just gonna give you half that basil or a third of it, or two thirds of it. Oh, God, I took too much away. Here's I need to add back 120% of it. Like, you know, you're giving it this leeway to drive the itself driving. You know, I'm always talking about like, keep it in the lines. This is just the self driving thing that sees the line on its own. It was oh, and then just rolls back. Oh my god. How did that never occur to me?

Jennifer Smith, CDE 16:43
Yeah, it is. It's kind of like the bumpers on like, the like bowling, right? Yeah, it is. It's like okay, we gotta go back this way. Now Oh, no, let's move you back

Scott Benner 16:53
this way in the bumping and nudging episodes. That's exactly what I'm talking about. It's kind of manually bumping yourself off the off the lines on the road. And an algorithm is just seeing the line coming and bumping itself back.

Jennifer Smith, CDE 17:05
Yep. It's got a predictive nature to it. So it can watch further out from where you currently are.

Scott Benner 17:10
Yeah, so meet the need, no matter what system you're using. And, you know, inevitably I'm gonna get a note for sighs like, you don't talk about MDI, it's the same thing. It's just, you know, you're putting all of your insulin in for basil at one time, instead of it being spread out. Sure, you don't have the ability to take away point five an hour, you know, or something like that, which would maybe be helpful, but you're going to find an amount of injected Basal insulin, that does the job, as well as you can get it and then you're going to have to make adjustments with your meals and corrections, correct.

Jennifer Smith, CDE 17:41
That's absolutely. And that's why, you know, one of the only places that we really recommend if you were going to look at your dose in your MDI is really to look at your overnight to see what is your Basal holding you overnight, is it you know, when you go to bed, you started a number does it hold you there until you wake up the next morning, and if it does, but the number was higher than you wanted? It's not necessarily the basil. It's where your last Bolus left you off. The basil just kept you there. So in that circumstance in my night might not be that you have take more Basal hit might actually be that your Bolus needs to be different.

Scott Benner 18:23
Okay, so Well, I appreciate you doing this one with me. Thank you very much. Excellent.

Hey, huge thanks to Jenny of course for coming on the show as she does if you would like to hire her she works at integrated diabetes.com You should go check her out. I want to thank also Omni pod. I'm serious. I said earlier, my daughter has been wearing it on the pod every day since she was four years old. She's 18 and in college now, the Omni pod has been nothing but a friend to her. And I think you'll enjoy it as well. Omni pod.com forward slash juice box head over there. Get started today. If you're enjoying the Juicebox Podcast, please tell a friend your doctor or somebody. Anybody everybody scream. Anyway, just tell somebody about the podcast. It really helps the show. I'll be back very soon with another episode. Thank you so much for listening.

#825 After Dark: California Sober

Perry has type 1 diabetes and a lifetime of stories. Warning: Drug related conversation.

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Scott Benner 0:00
Hello friends, and welcome to episode 825 of the Juicebox Podcast. What's an after dark episode? Oh, it's part, you're gonna love this

when you're hosting a podcast, the most you can hope for from your guests is honesty. And Perry brings the honesty in full force today. It's absolutely a fantastic episode. I can't thank him enough for being so open and vulnerable and honest. So Perry has type one diabetes, but he's only had it for a little while. But his little brother got it a really long time ago, and has since passed away. This conversation is going to twist and turn around personal feelings, drug use, the sale of narcotics, some violence, a lot of stuff in here, all from a guy who's made a pretty big change in his life. I hope you'll listen. It's terrific. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. Or becoming bold with insulin. Oh, please don't forget, if you're a US resident take this survey AT T one D exchange.org. Forward slash juice box really helps the show and people living with type one. Thank you. This episode of The Juicebox Podcast is brought to you by Dexcom, makers of the Dexcom G six and Dexcom G seven continuous glucose monitors, head over to dexcom.com Ford slash juicebox. To get started today, and find out more Dexcom G seven might not be out quite yet it's been FDA approved, might not be exactly available in the US right now. But go check out the link. It's everything you need to know. I rushed myself a little in the opening. So let me say again, T one D exchange.org. Forward slash juicebox. Take the survey, join the registry, it takes like 10 minutes, you're really helping when you do that. And I'm going to take a second here to remind you all about all the series that are within the podcast. You can find them in your podcast player by searching for them. Like if you wanted the defining diabetes series, you can type in defining diabetes juice box and it will come up you want it the Pro Tip series same thing. But if you want to see all of the series in one place, so you can kind of get a feeling for what episodes there are and what you can be looking for in your podcast player. Or if you want to just listen online, go to juicebox podcast.com. Actually, you can go to diabetes pro tip.com to at the top of those pages, hold on a second Juicebox Podcast sorry, there's a menu at the top of juicebox podcast.com where you'll see after dark this is an after dark episode by the way. Ask Scott and Jenny algorithm pumping bold beginnings to finding diabetes to finding thyroid diabetes, pro tip diabetes variables, mental wellness, click on one of those. I'm just going to pick one like here's mental wellness. When you click on that it tells you a little bit about it gives you a list of all the episodes. And there's actually a player right there where you can see the episode numbers. Listen to them right in the browser if you want, or at least you'll know what to search for in your podcast app. All right, so All right, I've hit record. So you're being recorded now. And all you need to do when you're ready, is just introduce yourself briefly and then we'll start talking.

Perry 3:43
My name is Perry and I'm a type one diabetic.

Scott Benner 3:46
Excellent. Perry. How old are you?

Perry 3:48
3333.

Scott Benner 3:51
When were you diagnosed? How old?

Perry 3:54
32.

Scott Benner 3:55
Oh, no kidding. Recently?

Perry 3:57
Yeah. New, new new.

Scott Benner 4:00
No kidding. Is there. Is there diabetes type one or other autoimmune issues in your family?

Perry 4:08
Yeah, not a lot. But yes, my. I have a cousin. On my father's side. That's the type one. That cousin on my mother saw. That's the type one. And everybody else is tied to this whole ballgame. But um, and then my younger brother, which is he's passed now. He was a type when he was born. He was diagnosed. He had an eight months old but they didn't diagnosed until he's nine months old.

Scott Benner 4:32
Okay. And you said he's passed away? How old was he when he passed? 19. Was that recently or in the past? Nine years

Perry 4:41
ago? These December 10 2013. We're staying on

Scott Benner 4:45
December 10 2013. Okay, so he's type one his whole life basically minus the first nine months. But you just this last year Can I ask you? Well, I guess we have to find out though. First, let's hear about how you were diagnosed. What did you notice? And how did it get you to a doctor?

Perry 5:06
I can't believe that we didn't notice it. We should have noticed that sooner with was my younger brother, you know, and but I don't know why we we couldn't read the writing on the walls, but I was extreme thirst. I remember throughout the night I remember one night I drink six sodas from midnight to 6am. And I was going back and forth to sleep to. And I knew something was right about that, and extreme thirst. And then I was working from home at the time. And upstairs and my mother would come up stairs just to look at me and I'd be on the clock bed asleep. Just just fall over. And finally she said let me check your sugar. And the machine that we had, it would read up to eight or 900 I believe something like and my sugar wouldn't read. It just said hi. So I was probably around 1000 Mark.

Scott Benner 6:02
And then you go to the hospital and you go to a doctor.

Perry 6:06
They tried to get me to go to the ER at the end. I really didn't want to I was going to but like I said I have another type one cousin. So I just called him and said Brian on the insulin because this happened on a Friday. So we couldn't and I didn't want to go to the hospital all weekend. So I got some human log from him one of his pens, and we were just micro dosing me over the weekend getting my sugar down. And now that was not an option. I would have went yeah. route because I was here I was probably in DK every person on this trip and it was. So it was so purple that Barney,

Scott Benner 6:45
I like I like Perry that when you realize you said piss you said, because as a response. You're like, I don't want to say passed down. Like I said, just speak the way you speak. We'll take care of it later. Your ketones are sky high. And you were Did you with any? Were you able to bring your blood sugar down over the weekend? I mean, I'm actually kept testing, right.

Perry 7:11
Oh, of course. Yes. Yeah. Like I said, if I had if that wasn't an option, it wasn't working out with the hospital. Yeah, we got it down. I really don't remember what we got it down to but we just kept micro dosing, you know, we really didn't want to go anything extreme. And we were just doing like two units at a time, you know, not much and we got it down. And then we went to the doctor Monday, and went there and told him what happened. Then he looked at me and he, they would recommend putting me in the hospital as well. But he knows I've been with him for a little while and he knows me. He knows I don't want to go. So they gave me fluids. And I'll sit in the office for like five, six hours. Getting fluids. I got like 15 bags of magnesium.

Scott Benner 7:53
Wow, good doctor. Or a mob? I'm not sure which one.

Perry 7:59
I love him. He's not much older than me. I'm 33 and he I believe he's 3638 Something like that. He's, I love my doctor.

Scott Benner 8:07
Yeah, that's excellent. Okay, so this is just a year ago. So were you sick prior to your diagnosis at all?

Perry 8:15
Not really. I mean, I was growing up. I was healthy as a horse. I was watching my brother watching my brother deal with it. He was a Medtronic patient.

Scott Benner 8:24
And so tell me so he was I'm sorry, your brother? Are we gonna say his name? Matthew. Yeah, no problems. Okay, so Matthew was 19 when he passed, but that's 789 years ago already. He'd be 28 now. Yes, sir. Okay, all right. He'd be 28 You're 33 Can we talk about him for a little bit? What was doing? You have a lot of recollection about our life with diabetes.

Perry 8:53
Oh, absolutely. I'm an open book, man. You can ask me anything. I'm very honest, that don't have problems doing anything.

Scott Benner 8:59
Yeah. Did he struggle with it? Or did he do well?

Perry 9:03
It was always a struggle.

Scott Benner 9:06
Why do you think

Perry 9:09
you hear the term brittle diabetic thrown around and stuff like Yeah, I mean, it's not a I don't know. But the Hey, you could consider him a brutal diabetic. I mean, it would just be extreme highs, extreme lows. Because before he got diagnosed, he was sucking the the he would get the baby wipes and he was sucking the juice out of the baby wipes. He's drinking a gallon of tea a day. He was drinking. He was floating his bed. And that's when mom and knew something went wrong. And they rushed him to the doctor and he actually had my copy of my pediatrician was Dr. Whitmer. Again, he didn't catch it, and then turned out another pediatrician called it and they diagnosed him and I was

Scott Benner 9:54
sucking the liquid out of the wet wipes that that'll stick with me for a while. That's something you To the extreme

Perry 10:00
thirst and I know what he's talking about now. I mean, you just like, you use like you get caught off from smoking weed. That your sugar.

Scott Benner 10:12
Well, that's okay. So, so he's diagnosed obviously very early. And I mean, we're talking about 32 ish years ago too. So in the early 90s, kind of random born in 94, or 94. Okay, so 9495 This happened, then you're, it's you, you're older and him. Is there other are there other kids? Are you the only two?

Perry 10:38
I have a sister that she was never like, stillborn, you, I guess you would say she never actually made it. So

Scott Benner 10:46
but so my point is your mom was raising two little boys at that point. Oh,

Perry 10:51
yeah. And the part was that she got sent home was a baby that had type one diabetes, and she had no clue how to take care of.

Scott Benner 10:59
Yeah, that's my point. So so she does the best she can with him. And is she your parents together at that point are now

Perry 11:08
not anywhere near divorce now but they were together. They were that

Scott Benner 11:12
okay? So your mom and dad are are trying to help this little baby you're not much older. And it's tough for her she's she's not getting good direction. At some point is your brother trying insulin pump or glucose monitor or anything like that?

Perry 11:27
Well back Matthew was one of the ones he was borderline on the shitty treatment like because the insulin that was available back then was and now getting the finally when he was six years old, they put him on a pump. And we had to go to Charlotte to do that.

Scott Benner 11:46
So he Charlotte North. Yeah, he did regular mph then for five or so years. Yeah, exactly. Yeah. So your mom was shooting them a couple times a day feed them on a schedule that kind of stuff. Did your did your life have to follow his diabetes schedule? As far as food went?

Perry 12:03
Horse food? No, not really. Waited? No, not really. I mean, never seem to really bother him. Like if I ate something in front of him because he he'll if he wanted to, he needed to just take a shot for it. So

Scott Benner 12:18
okay. So alright, so when you finally hit the truck, isn't that interesting? How long ago was you had to travel to get on a pump. So he gets on a pump, which means he goes to faster acting insulin. And things don't get much better for him. There's your mom not get like good direction again, around what to do.

Perry 12:38
She had a woman that was helping, I can't remember her name. But she really, really helped me out a lot and really informed mom of how to take care of this baby. And she's done a good job because now I trust my mother's opinion just as much as my endocrinologist. The only reason I go down there is because my wallet can't write prescriptions.

Scott Benner 13:03
And get her doing that. She's gonna make a lot of friends. So

Perry 13:06
she she's very she's very intelligent when it comes to type one diabetes.

Scott Benner 13:10
Okay, so the diabetes part was when he was younger you think was being fairly well taken care of. Are you aware of what his a onesies were back then? By any chance?

Perry 13:19
The highest he's ever had was 14 point something.

Scott Benner 13:23
Do you know where it was generally speaking, like they like after he was

Perry 13:28
when the 14 happened? Yeah. Do

Scott Benner 13:30
you think that 14 was early on? No, the

Perry 13:33
14 like as like teenagers and stuff growing up, you know, especially going through puberty. And so you can stare and you you know how steroids are?

Scott Benner 13:43
Yeah. Was he using steroids?

Perry 13:46
Oh, yeah. Well, see what Yeah, didn't forgot more important part about his diagnosis was that he had some of the worst asthma you could ever imagine. And that really, really, really complicated it because he was on steroids for that. And then that's just destroying and his blood sugar's he lived in the hospital for half the year for the first five years of his life. And he was in the hospital half a year.

Scott Benner 14:14
And that was from the asthma

Perry 14:17
from the asthma and the diabetes, both there just it was like, like it was uncontrollable. We were always going to the emergency room and they were always admitting him in the hospital. I mean, he got to the point to where the three I can go down to that hospital get me to greasy hot dogs, and I go sit on that air conditioner and eat them and look out the window. I've done that so many times. I wish I had $1 for every time I did it. Yeah. feels comfortable.

Scott Benner 14:41
Probably. Yeah. Okay, so he's got asthma and type one on top of that they're giving him steroids for the asthma which is driving up his blood sugar. And back then there's no I mean, even the meter technology shaky but there's no continuous glucose monitors. He can't it's not like you're looking at his blood sugar constantly on a phone or something.

Perry 15:00
They were talking about it. That's that's they were talking about about it back then. But they it never became available to him before. He ended up passing.

Scott Benner 15:11
But okay, so then I'm imagining as he gets older, he's taking over more of the care from your mom. And he's probably not putting in the same effort. She is. And her effort was still she was fighting an uphill battle. And then Oh,

Perry 15:26
absolutely. You know that. I mean, of course, it's a it's a child, you know, how a child is going to control its own. I mean, they wouldn't even take his insulin sometimes, you know?

Scott Benner 15:36
Okay, so he was pretty, he was pretty resistant to doing the thing. No, not resistant, or do you think no, it was just, what do you think it was?

Perry 15:48
Not really, he was pretty good about it. Because my mother she she stayed on top of him from it, because when Atlantis come around, that was a dream. And then every night, I thought I had another little brother because mom would holler out Lantis every single night that we have to remind him to take it and I had another little brother.

Scott Benner 16:07
At the end of the Waltons, can I can I parry? Okay, so All right. So his his care is, is is what it is through his adult years. And he passes away does he pass away from something related to type one? Yeah,

Perry 16:23
he had a heart attack and it was directly related to two of his arteries going to his heart were 100% clogged. And the last one I believe was in like 43% or something like that. The doctor said it was a very extreme heart attack. He said he felt nothing. He just he just went

Scott Benner 16:43
home. Did he have other issues from diabetes before the heart attack? Problems with his eyes or neuropathy? Or was there any other things happening?

Perry 16:53
Not necessarily. He probably was dealing with neuropathy and just didn't really know. But back then they only back then the doctors only thing they did they pushed kidneys and eyes on us. They never said anything about his heart because he didn't he was only weighed 170 bangles. So he wasn't overweight or anything like it. They never one time checked his heart. They never said anything about his heart. They only just pushed kidneys and eyes down our throats.

Scott Benner 17:25
Yeah, it's so I mean, because you have type one. Now I'll share with you that you know, the way anything goes wrong and your body from high blood sugars, whether it's your kidneys, your heart, your eyes or anything. It's that that sugar in the molecular level is it's there's too much of it packed in your bloodstream, and it's actually scraping the insides of your veins and your arteries. Yeah.

Perry 17:51
Can you tell us they told us they told us his arteries crystallized they hardened over completely and crystallized and there was absolutely no flow going through the Yeah,

Scott Benner 18:01
it's terrible. Because what happens is they get scraped, and then they try to repair themselves and they scar, and then that's that scarring makes a blockage. And so

Perry 18:12
yeah, even told us that they even told us that he had a minor heart attack the week before. I don't know if he knew it and didn't tell us or just didn't know or

Scott Benner 18:21
Yeah, so his death is a is a shock then?

Perry 18:26
I absolutely um, he was he worked third shift at the time. And he was at my house. And he was he was complaining that his

Scott Benner 18:40
take your timecard I'm sorry.

Perry 18:43
He was complaining about a headache. And he took some heavy probe. And he said he's starting to feel better. It was 1015. And then at 1030, he left left in the van. And we didn't know and I say this too. I was on house arrest at the time. And it three o'clock in the morning. Greenville County was beaten on the door and I thought they were coming for me so I was hard. And they just asked them questions about Matthew and Mark said, Why are you asking questions about Matthew, he's the one in trouble important to me. And and in this one they they told us and my mother just failed her knees instantly. Because he actually died at the wheel. He he had the heart attack and then crossed three lanes of traffic and went into a parking lot. And his foot was never on the brake. wasn't on the gas either. And he was still in gear, but I guess it had died. He sat there for two hours dead before anyone ever even notice it. Okay, Is it was a rough area where he's at I mean, hailed to be honest reality. They probably just passed out from dope or something. But

Scott Benner 20:10
did he do someone? I'm sorry? I didn't mean to cut you off. No, no, go ahead. Oh, yeah. Was he doing like, other drugs as well?

Perry 20:21
Oh, no, no, he wouldn't do it. He was clean. Yeah, no, he wouldn't do anything. Okay. It's just that's all I'm saying that that area was rough. And he was way he was dead over the wheel. Probably thought he was I

Scott Benner 20:33
don't know, their guy passed out in the car somewhere. And

Perry 20:36
they just don't. Yeah, they just thought no, no, no, he went on his toxicology report come back clean. Okay.

Scott Benner 20:44
Well, well, obviously, this is, is completely shocking. So when, when this happens, I guess the the way I want to go with a conversation is it kind of takes diabetes out of your life suddenly, right? Like it just doesn't exist anymore? And do you forget about it? Or is it something that you still kind of hold on to?

dexcom.com forward slash juice box. That's where you're going to go to learn more and get started today with the Dexcom CGM. Why would you do that? Well, if you're using insulin, your blood sugar can and will fluctuate. Being able to see those fluctuations to see the rate and change that's going on in your blood sugar to just be able to see the number like I'm gonna pick up my phone right now Arden's away at college. And I can tell you that her blood sugar is 94. And it's decreasing. Looks like she's drifting down just slightly. Now I happen to know Arden is in our dorm room doing her homework right now. But this drop is a little suspect to me. Looks like she looks like she missed on her lunch a little bit, probably Bolus again to get it down. And now she's dropping a little beyond where she probably wants to be. So I'm gonna watch this. For the next couple of minutes. I'll see her blood sugar in real time. And I'll make a decision as to whether or not it's going to level out or keep falling. If it's going to keep falling. I might send her a little text and be like, Hey, I don't think your blood sugar is gonna stop just to sort of make her aware of it. But if this fall was happening quickly, I would know it too. I'd be looking and thinking, Oh, our budget is falling too fast. I have to call her. This is this is the technology. This is what you want. It's what you need. Go find it dexcom.com forward slash us bucks. I'm seeing my daughter's blood sugar. She's 700 miles from here, seeing it on my phone, just the swipe of my finger. Actually up to 10 people can follow her right now my wife and myself and a couple of her roommates follow her Dexcom they only have her settings. Like they're not bothered with alarms during the day, but they have it set up sort of Arden's blood sugar gets the 55 they get an alarm so they can go check on her. You can set your alarms wherever you want. Mine are at 120 and 70. But you know Dexcom allows you the freedom to do whatever you want to do with it. Seriously, just I mean, I can't say enough good things about it. dexcom.com Ford slash juice box Get started today with the G six G seven is coming any minute now in the US. And it's available in Europe. Go What are you doing? I mean, listen, the power in that go? is probably not amazing. By the way. What do you say there's we're not even a little bit into the story yet.

Perry 23:55
Oh, I've never I'd never let it. I haven't I have a tattoo on my face and it says his name. And then I've got the little universal diabetes and we'll go under I mean, it's that and I know this might sound stupid, but he was my best friend. And putting this tattoo on my face is I feel this way I can still carry on with me.

Scott Benner 24:16
No, it doesn't sound stupid but I just wanted to know if you like once the care of the day to day care of diabetes was out of the house like does it dissipate or do you? I mean do you think of it as what killed Mama

Perry 24:28
Mama Really? Really? Because you know she's always had something to do you know, because there's a child type one diabetes and you can only do so it really affected her more than anything because she didn't really have that to do now know when to take care of.

Scott Benner 24:43
Yeah, and I lost her job almost.

Perry 24:46
Yeah. Now she's she's quite murky and male.

Scott Benner 24:50
Did you find yourself angry about his death? Which said absolutely. Yeah. What did the anger get focused that like was it the diabetes or how did it come out when you were thinking hear about it

Perry 25:04
I just had it I was just mad. And I know this is gonna sound horrible too but I said Why couldn't it be someone else's brother? Why do you have tape? Why Why mine?

Scott Benner 25:16
I understand. I guess I guess I'm I was glad to hear your story obviously and I appreciate your time it was hard to talk about. I asked you about it because I wondered when you get diagnosed last year what is your first thought this is gonna kill me or like I wanted to know how you felt about and how you've kind of approached it.

Perry 25:38
It was really a lot of deja vu because you know I certainly we're right back into it and I'm actually worse off than he was because now I have gastroparesis as well and I keep my sugar under control better than he did so like right now my hair you want to see is 6.6 It was 5.8 last time but

Scott Benner 26:03
guess your presets. Are you pretty quickly are they sure it's gastroparesis?

Perry 26:07
Well yeah, they don't they don't the gastric emptying study and my daughter told me he said it was a 40 minute test and it took two and a half hours. And my daughter said when it takes two hours that's when they consider it gastroparesis and ours. That's a two and a half hour mark and they gave me reglan. They just started me on regular a few days ago and it's been night and day difference this week as far as my stomach i mean i i can do backflips because

Scott Benner 26:38
Tell me a little bit about the symptoms with your stomach like how does it present what got you to the doctor

Perry 26:45
really bloated a lot belching a lot can't eat or then when you do eat I take just two or three bites and I feel full all of a sudden and then I had a bad cancer scare too because my pancreas they removed it as well have it and the more I had a cyst on it. It was eight millimeters it was they said it was decent size and they said it was hard. And you know usually stuff hard. That's when you start worrying and then they send a biopsy off and they remember to come back clean. So there's another and it won't pancreatic cancer.

Scott Benner 27:23
How long ago was the sisters since the diabetes diagnosis right?

Perry 27:28
Oh yeah, the cyst. They removed my pancreas probably about a year ago.

Scott Benner 27:34
So you didn't Did you get diabetes before they took out your pancreas or do you have diabetes because they took out your pancreas.

Perry 27:40
I had diabetes before that took out my pancreas. my pancreas is because also my pancreas. It didn't make enzymes either. Matt Matthews pancreas still made enzymes. I didn't know about that. The enzymes that help you digest your food, because now I had to take I take reglan 30 minutes before I and then I take Kreon directly after I enzymes to help me digest the food because it's not as explosive diarrhea and it's painful.

Scott Benner 28:07
Yeah, I was. So it's funny. I mean, not funny, but I was gonna say that my daughter is the one in my family who has type one and she's 18 and a lot of the things you talked about about the bloating and getting full easily and not digesting food etc. was happening to her We took her to a to a doctor who you know, looked in her stomach and said, hey, you know she's got undigested food in here. And then he just called a gastroparesis. Now, my daughter's had hurry once he's been in the fives or the sexist for like the last 10 years. And so it seemed odd that she would have gastro priestess, it also seems odd that you would have it so quickly after your diagnosis. And so

Perry 28:47
I can go into your route. Now I've gotten neuropathy, I'm already dealing with it, because I just know that's what it is because I've got a test scheduled, they're getting ready to do that. And that'll be another diagnosis. So

Scott Benner 28:58
why do you think it's moving so quickly? I

Perry 29:01
have no idea to be honest, we I really don't. But it is it is escalating quickly. It really is. Yeah.

Scott Benner 29:09
So not that these not that your thing and her thing have to be the same thing. But she started just taking an over the counter digestive enzyme. And, and pairing it up with well, she started with the digestive enzyme, which got the food get getting out of her stomach. And so that helped a lot. And then after that she wasn't still wasn't going to the bathroom. So we added a magnesium oxide that helped her go to the bathroom. And then we put in a really like kind of high quality probiotic to kind of rebuild her, you know, the bacteria in our stomach. And she's doing so much better now from that. Excuse me,

Perry 29:44
he put me on. He tried to put me on the probiotics too. I took all my stuff and then there's something else he gave me for my stomach. I don't know if maybe it was in any heavy on carface was just like a high powered Pepto Bismol and then but I'll tell either so far the Raglin the Kreon those two together is I can get through a day pretty easily with both of them if I don't have them.

Scott Benner 30:09
It's rough. Yeah, we learned what we learned was we tried the probiotics like a year before. But I think what was happening is that her stomach was kind of such a nasty place with undigested food that the probiotics couldn't make a dent in it. It wasn't until we aided the digestion, and then made sure that the elimination part was happening, like the way it was supposed to like so once the body was flowing, you know, in the mouth out or s like, you know, the way it was supposed to. And then adding the probiotics seem to help her like so. I mean, I don't know, man, but that's it's tough. And it just seems like look, I'm not a doctor. But it's crazy that you could develop gastroparesis, and a year after having type one diabetes with a 6681 C that doesn't. That sounds a little weird, because I would more think that you lost your pancreas, and all of the help that it gives with digestion. Like I don't know if so, there's an episode I'm going to find it for you. I'll tell you about a theory. But you're asking

Perry 31:06
a minute ago you said what I thought could lead to help because I'm pretty honest person. I had a pretty good drug addiction for several years and maybe that could have unclean now but

Scott Benner 31:19
yeah, I don't know, man. All I can tell you is that I'm looking for it right now. That the Doctor Who does that kind of work who looks at someone's stomach they call any slow digestion they call it gastroparesis. So there's a difference between gastro precice that you get from uncontrolled diabetes. And the just the idea that you're not digesting food quickly. So that but then you mentioned neuropathy, and that slowed me down from saying that to you. So where are you feeling? neuropathy? Hands, feet.

Perry 31:54
Those hands feet, I get the sharp I get more than burning sensations and the sharp pains then the cold since some people say cold some people say hot, but I get more real. It sucks. Yeah.

Scott Benner 32:10
Do your blood sugar's bounce. Do you get real high in the real low?

Perry 32:15
Yeah, cuz we're on new. I don't know how to Bolus for food yet. I mean, I'm still learning in it sounds like you would think I would know more because I had a brother for not two years with it. But it's just different when you got to deal with yourself. Sure.

Scott Benner 32:28
Sure. How about you? How are you making out with gear like you're using a pumper? Are you shooting with MDI or what are you doing?

Perry 32:37
I'm a tandem patient. And we're Dexcom as well.

Scott Benner 32:40
Oh, yeah. So do they have you on control? IQ?

Perry 32:44
Yeah, I'm on controlling cute.

Scott Benner 32:46
Are you Pre-Bolus In your meals putting in insulin before you eat?

Perry 32:50
Yes, I'm just not good at it. I'm trying to learn how to count count and you know and

Scott Benner 32:56
the you think counting the carbs is your is your biggest challenge.

Perry 33:02
Currently, yeah.

Scott Benner 33:03
What kind of? Do you mind me asking about this stuff? What kind of diet do you think you keep like what's an average day?

Perry 33:13
Oh, we're the gastro. I don't eat during the day. I can't eat most of the days. It's it's just sucks. And I've gotten used to now I eat one time a day in the evening. And I mean, I pretty much eat what I want. But I don't go crazy. Well, you know, I keep it. Modest with it. But just take it on board.

Scott Benner 33:33
How about is there a lot of deep fried foods? A lot of oils?

Perry 33:38
No, no, the air? No, the airfryer really love that.

Scott Benner 33:42
Good. Good. Okay, I'm just because sometimes fat can also slow down digestion. So I was wondering about

Perry 33:48
Yeah, that was right. I was reading it last night.

Scott Benner 33:51
You're gonna learn a lot of stuff this year you didn't think you'd ever have the care about? But it's good to know. You know, I mean, the better to sit like Just imagine if podcasts and stuff like that, you know, existed for your mom back when she was trying to raise a nine month old with diabetes or any of this ology

Perry 34:10
Haley? If that was true, he could still be alive that oh, you never know.

Scott Benner 34:16
I I hate to say but I think that, you know, I've interviewed a lot of people and people who had type one diabetes for a long time, who were kind of diagnosed back then they'll all tell you the same story that it was a lot of just randomness like you shot the insulin you ate, you didn't really know what you were doing. You know, the doctors,

Perry 34:36
the doctors didn't even know back then hardly because they didn't have because if they would have known they would tell them what to do.

Scott Benner 34:43
Yeah, no, it was just and the technology wasn't great. meters weren't great pumping wasn't great. So you couldn't even test you couldn't even like test enough to really give yourself an idea of what was happening and with those other insolence that are in the mph, for example. And older ones, you know, the poor Can beef and that kind of stuff. It's not like you were shooting insulin for a meal, you were just kind of putting it in. And then just hoping that it was enough to handle the meals that you were having and kind of trying to eat to the insulin, where now you can decide eat something and push a button and get insulin for it. It's a big deal.

Perry 35:18
I can even give myself insulin from my phone. Yeah, right. It's it's Bolus from my phone.

Scott Benner 35:26
It's absolutely amazing. And you're probably getting that six, a one C, at the moment, just because the algorithm is trying so hard to keep you in range. Exactly. Yeah. So

Perry 35:38
that is my biggest challenge. Now I've just got to learn the Pre-Bolus better and to count better how to. Yeah, I'm constantly I'll reach in the trash can look at like, Damn, it wasn't. So

Scott Benner 35:50
you also start to get a feeling for it. After a while because people don't eat. I mean, there's not an endless number of foods you eat. Like, if you really look at your diet, you probably eat the same handful of things over and over again. So you can kind of start to learn, like, alright, I tried, you know, I said this was 30 carbs, and I, you know, my blood sugar went to 180. And then I had to correct it with another unit. Like, maybe I'll try saying it's, I don't know, 33 Next time, or, you know, or putting in a little extra insulin.

Perry 36:16
Also that I'm actually really limited on by what I can eat because they hadn't. I have full dentures, but they removed my teeth about a year ago as well.

Scott Benner 36:26
I thought you were gonna say because they put you on a gastro precice diet, which is limiting, but it's about oh, it's about dentures. And so I gotta ask you before we get too much farther, Perry, how do you end up on house arrest?

Perry 36:41
I liked selling drugs and running from low

Scott Benner 36:45
and getting caught while you're doing those things. I guess more importantly,

Perry 36:49
I was in the wrong car when I was running. Yeah.

Scott Benner 36:51
Okay, good, Tommy. Do it. I'm sorry to cut you off. I didn't mean to. I was just gonna say go ahead and keep going.

Perry 37:01
Oh, I'm sorry. I was just saying I was in the wrong car that day because hail. I ran through all several times. I was just in Rome core. It blew up. I was in my wife I was in I was in my wife's car and it was just Jetta. If it hadn't died, I'd made it.

Scott Benner 37:19
You were gonna make it. And the car the cars the fault.

Perry 37:23
They had to they? You know what a pit maneuver is? I do? They pitted me eight times. All they did they pit me it knocked me around. I drove the other way. They drove back they picked me up, you're out I can go and I said I'm gonna make him work for it. They owe the cops when they when the car finally. They me and Matthew were in the car. They come at gunpoint and drew both of us out. And then that cop punched me in the face. Sorry, I may say but which I hail I deserve that. But uh, and then, uh, they kind of pissed me off though. Because Matthew, you know, diabetics, we carry a bag around at all times, with stuff in it. Matthew had his bag and they were going through it looking at needles, and they said, Oh, who's the dope head? I said, if you buddy I said his. And then when the sheriff showed up, no one told anything to him. He just looked in the car and he said, Who's the diabetic? I

Scott Benner 38:19
said, Thank you. He knows right. Hey, listen, I'm gonna put this out here right now. Volkswagen wants to buy an ad on this episode. I'll put it back together again. 40 Here's what an ad for a Jetta you know what I mean. I think really held up. I don't know why

Perry 38:37
the cop was so mad because when he showed up to court he had a brand new car. Because he was using the car. He was coming off and it's Oh, he got a brand new and

Scott Benner 38:48
I love the way you think this guy should have been happy you got him a new squad car?

Perry 38:52
Or you had a new charger?

Scott Benner 38:55
It really should have a thank you what the hell? Were you guys underage at that point or how old were you?

Perry 39:01
20 or 20

Scott Benner 39:04
and that just that whole thing just put you on house arrest it doesn't get your time

Perry 39:11
the first and then how stressed bisexual actually the first time was for three months that was true the sound sound dope and they wanted to put me in there but thank God for character witnesses you know people standing out to hearing crime. Are you saying being a bad person? Yeah, so it got me out. They got the house arrest and 90 days for that and then second time I got house arrest was for running from the oil.

Scott Benner 39:39
When I got a call when you say dope I think of heroin but you mean weed?

Perry 39:44
It was actually it's fake. That fakes that that incident stuff you remember? You were selling? I can't think of the name of it. Damn it. Okay to spice

Scott Benner 39:54
spice. That's what I was. That's the word I couldn't find. Okay. And but that's still is that Part of the reason why you only got house arrest

Perry 40:03
Hill no actually they took that they that was there they were mad yeah they were mad about that they wouldn't take it for ease only if it was actually just leave. They came in the store I worked that they I'm honest. We sold that spy stuff and then we sold the basketball which is nothing but you know cocaine and they come in looking for that they didn't find it because there's next door we we hit it and they were mad and they illegally got my keys and went to my car and pulled out a bag of that incense he was like 500 grams or something like that. And illegal he had he couldn't go to my car he didn't have work my car so matter that

Scott Benner 40:54
bath salts I guess the the deal was that it was so so much cheaper than like using meth or cocaine. Right so

Perry 41:00
a lot cheaper news better.

Scott Benner 41:03
Gotcha. That's like back when the the news stories of like guys like losing their like eating people in the street and stuff like that. Those were bath salts, right? That's those trips.

Perry 41:16
I don't believe that. I want to know what I want to know what else they were own. They were just they were blaming it all on bass all the time, because that was the hot topic. I want to know what else I want to know what else he was on. Gotcha, you know, to bid to make you do that because I would have done more bass out new shakes thicket, and I'd never eat nobody space. So

Scott Benner 41:37
what's the high from Bath Salts like is it

Perry 41:41
it's like a methamphetamine.

Scott Benner 41:44
Do Is that why you lost your teeth by any chance?

Perry 41:48
Oh, yeah. Cuz after that, after the vast assault and all that stuff, and I never really done any hard drugs until Matthew died. And I mean, I'm not really using it as an excuse. But I was. I was. I was going crazy after he dies. I didn't know what to do.

Scott Benner 42:06
Anyone else? Sorry. Prior to him, you'd sold it, but you weren't using it.

Perry 42:12
Now Yeah, no, I was using it while selling. And then. No, yeah. Your time at drug dealers, though. But uh, and then after that, after you die, that's when I tried miss. And then I got hooked on that for a couple of years. And that sucks that more than morphine.

Scott Benner 42:33
What got you off of that?

Perry 42:35
I got I just when you get sick and tired of being sick and tired, and you make that I was I was done with us. I said, I'm just I'm just taking this and my mother had moved to Kentucky after my parents divorced. And then I just went up there and went to her house. And I went in the room for three weeks. I come out to be that was it and get something to drink. I didn't eat nothing. I didn't talk to nobody. But I just set her and sweated it out for three weeks. And I was done with

Scott Benner 43:06
Perry, you you you kicked it on your own. Just in the house.

Perry 43:09
Yeah. My dad tried to run dad tried to get me go to rehab, but I wouldn't end. And then you know, of course any true any real Dopey and I'll be an address my life, you know, technically. So I've relapsed a couple of times over those years. But you know, I'm playing out do you think any more of it?

Scott Benner 43:29
So while you were talking, I Googled this. And there's an NIH article. It's 2011. But it's about neurological manifestations of chronic meth abuse. And one of the things I found in here was neuropathy.

Perry 43:48
I can tell you right now, I have Restless Leg Syndrome from that I the day I quit doing math. And then there's three weeks after I was doing as developed restless leg syndrome. And I still to this day had Yeah, okay.

Scott Benner 44:04
Well, I think just when you're talking to your doctor about this, I think you have to be honest with them. Not that you probably aren't, but I think you have to tell them that you think that might be from the math not from the

Perry 44:14
I know, I was thinking honestly I was talking to my girlfriend about that earlier because he's putting me on different medicines and stuff. I just need to be honest with him letting him know that kind of what my history is so because he's any kind of any kind of dose they give me I need a double of it because I'm very I'm very very tolerant to things and I build a tolerance extremely quick. Yeah.

Scott Benner 44:41
Yeah, you in that jet are tough.

Perry 44:44
That's like the other day when I went up there they put me on depression medicine, I'm gonna Wellbutrin now and it's like I can tell it I can tell the difference is actually helped me put me in a little better mood but I need to I need to double dose. I mean, because well, what let's wait like Ain't anybody that goes into the hospital say like you'd get hurt like if you're a bad dope head was that normal dose they give you ain't gonna do

Scott Benner 45:07
doesn't touch you the way it touches other people. Yeah. What? How long do you think you were depressed for?

Perry 45:15
The Hill I'm still in prison now because I lost my I lost my house in the flood back in July I lost three cars and

Scott Benner 45:23
part of what I put on. There was a flood you lost your home.

Perry 45:28
You remember back in July. Do you hear anything about the big rains in eastern Kentucky?

Scott Benner 45:34
I think I did actually have a friend who lives in Kentucky. So I did hear about that. And that

Perry 45:39
was it. I was I was a victim. My house was under 10 foot of water.

Scott Benner 45:43
Oh my god. Were you there? How do you get away from something like that?

Perry 45:48
I was actually trapped upstairs because the water started coming in so fast that it started running in the house. It was probably a foot deep in the house and I have three three dogs. So I grabbed my German my first German Shepherd and I put I picked her up like just like a baby and she knew what I was doing. She wrapped her legs around my neck and hailed on the top. And I carried her to safety. Come back and I had my other German Shepherd he's standing on the coffee table because the waters rise and I grabbed him put him around my shoulders and carry him to safety. Then I come back and get my other little manager aussiedoodle and get him to safety and then come back get mama and then I went into the kitchen to kill them because by this time there's four for the water my pump Thank God this waterproof because I was walking through water and it was under

Scott Benner 46:40
way to go tandem to nicely done. Yeah, yeah. Hey, you got the dogs before your mom.

Perry 46:47
She was actually getting we had two puppies out back so that's what No, that's it. Yeah, there's two puppies that wreck she was asking you will get two puppies. I'll get these and then and then I got mom to her next door. And then I'm like I said I went into the kitchen to go kill because at least for put water in there. I went to the kitchen go kill the main power. And I took a step and took a stick and killed the main power. And by that point, there's probably five or six. I couldn't get out. I had to go upstairs and I was trapped. I was trapped upstairs. Stratton upstairs for 12 hours.

Scott Benner 47:22
Okay, okay. Wow. And then the water recedes. But then the house is just ruined after

Perry 47:26
that. Yeah, they've already tore it down. Sorry, going. What are you going to do? Move in Australia.

Scott Benner 47:34
You're going to go to a trailer. Is that what your mom's doing as well?

Perry 47:37
Yeah, moving mobile home. Okay.

Scott Benner 47:38
Okay. Did you get any? Did you have any kind of insurance coverage for the house? No, or just the dead loss? Because I mean, no, you wouldn't expect a flood there like that. Right?

Perry 47:51
It's never happened. There was actually a first time thing and they called it where my area exactly. I live in Letcher County in Whitesburg and the next little town over hazard. Kentucky and maybe Harlem was as well. But we got hit the absolute hardest. They said ours was 1000 year flood. What they call it?

Scott Benner 48:13
Oh, lucky. You know, Jesus that sucks.

Perry 48:18
It was it was the water was so strong. It was it was picking houses up off the foundation and moving on.

Scott Benner 48:25
Okay, well, that's cool. Well, because the houses are not built for that. Right now that nobody thinks.

Perry 48:31
I think. I think the final count is there's about 50 people that died.

Scott Benner 48:35
Wow. Wow, jeez, that's terrible. Oh, my God. Okay, so are you at the moment? Do you have the mobile home yet? Or are you are you staying somewhere else until then?

Perry 48:49
I'm in South Carolina right now family, but um, they're actually getting ready to move it in. Like next week.

Scott Benner 48:55
Okay. And you'll go back and then that you're going back to Kentucky then.

Perry 49:00
What do ya okay.

Scott Benner 49:03
All right. Well, your girlfriend is she where you are now or is she back in Kentucky? Now she's Yeah, she's she's in South Carolina with you. Okay, so you guys would be going together? I imagine if you went back Yeah, yeah. Okay. All right. Well, I like

Perry 49:18
like, like to try and help you and I hope it

Scott Benner 49:21
works out for you. I mean, just it's absolutely insane. Do you think that your brother's like the anniversary of your brother's passing hit you harder this year because more things are going on or because the reason you let me just say for people listening. The reason you're talking to me today is because I think somebody directed you to the Facebook group for the podcast. And you put up a really like touching post about your brother. And then I think Willie sent you to me, to be honest, you don't know this about the show but the show books out like a year in advance. So you and I are recording today in December because I had like an I don't get a lot of cancellations but I just had a cancellation like If we didn't do this today, right now, I wouldn't be able to do this till like September 2023. So the timing was just really crazy. Like you were there. And I thought I was gonna, I was going to do some editing that day, but I thought all record with Perry, you know, as well. And so you're very new to the podcast and you're but but my question is, does it Does it strike you every year at his anniversary the way it did this year? Or do you think you're a little more emotional this year?

Perry 50:31
You know, he sees me for your heart and his his birthdays Valentine's Day and history pretty hard to?

Scott Benner 50:38
Yeah, I imagined it does. What do you get out of the sharing? You just are you trying to let people know how you feel? Or you're trying to let them know about him trying to keep his memory alive? Like, what is that? What's that desire to tell people about it?

Perry 50:52
Just like sick keep his memory alive. So I've tried to hold on to the good ones. And just the industrious part about grief is sometimes you'll laugh and cry over the same memory.

Scott Benner 51:04
Really? Really? That's terrible. I mean, you almost made me cry earlier, to be honest with you. People make me cry sometimes, but I don't know why. I didn't think it would happen with a guy. I know that sounds odd. But like when you started talking, I thought I'll be okay. But then when it chokes you up and I was like, dammit, I'm gonna get upset too. But but you be just you just miss them. That's what you're about to say.

Perry 51:29
Yeah, yes, it is. It's rough to talk about it's doing even after nine years. I don't expect is ever getting better.

Scott Benner 51:37
Doesn't doesn't mess with your sobriety though. You're able to kind of keep those things separate.

Perry 51:44
Well, California sober will say that

Scott Benner 51:49
means we can drink and smoke weed stuff. Yeah, yeah,

Perry 51:52
I log into no alcohol whatsoever. No drinking. Oh, I can't. That's that's like taking a shot of insulin. It just bothers me out so bad.

Scott Benner 52:02
Oh, no kidding. Okay. All right.

Perry 52:06
I shouldn't drink at all, like heart now. mixed drinks and stuff like it. Yeah, raise your sugar but like hard liquor just taking shots. You can't do that.

Scott Benner 52:12
Okay. And you don't

Perry 52:15
I know a lot of type ones that I've in another group as well. You can't wait hard liquor, you will you better eat a big meal. And they need another meal too. If you're gonna drink some liquor. That's

Scott Benner 52:25
how it hits you. Okay, and beer. You're not a fan of.

Perry 52:29
I used to like it, but I skate no more.

Scott Benner 52:31
Yeah. It's interesting. It really is interesting how things change. If we could like just kind of change direction for half a second. Not that anything anybody's going to say is going to stop anybody in their tracks. But if you could get in a time machine and go back, would you ever have touched the drugs?

Perry 52:53
If I could go back, hell no. I go back and slap me right in the face.

Scott Benner 52:59
Can you? Can you think back to that point? Why it was attractive to you back then. And what you know now? Like what's like, what would you? Like if you knew like, if you know how that kid felt? So what would you say to him to try to help them with that? Like a hill. Like if you could go find yourself as a child. Like you you know how that kid felt like so? Can you? Well,

Perry 53:26
I didn't only thing I've ever done growing up to smoke weed. I mean, most kids do that growing up and then I'd never done anything else. I didn't really know what it would actually I didn't know it's gonna ruin your year about it, but it's gonna ruin your life. And you did.

Scott Benner 53:48
It's almost so is it almost like I don't know, you're you're smoking weed and you're just looking for something different. Right? And so you try other things. You don't know the severity of how it'll grab a hold of you. And then once it's got you it's hard to just you just can't walk away from it at that point.

Perry 54:05
It's it's a revolving door man. It's so it's more mental than physical To be honest, we now heroin withdrawals are all they're really physical, like your pain sucks. And the meth withdrawals is more mental than anything. You just drive yourself crazy mentally. And that is that first because I never smoked it. I only snorted it. First time I ever sniffed it. I fell in love. I feel on top of the world. I felt like I was a king. That was the best thing. It was handier than a pocket or shirt.

Scott Benner 54:47
I love just just a physical feeling. And like because you know when people talk about it, they talked about people are in pain and they're struggling and they want to relieve that pain. That's what drinking is. That's what drugs are I think

Perry 55:00
it's the most extreme dopamine release you've ever experienced.

Scott Benner 55:04
Okay. And then And then, is it diminishing returns? Like every time you need more to get to the same place?

Perry 55:11
Oh, yeah. Now it depends on how good the quality was. And if he has a good, you know, you do a little more, but you'd be gone for 12 hours and then come back get a little more. But sometimes we wouldn't always like good.

Scott Benner 55:21
And you're not functioning for those 12 hours, right? You're just sort of like, in actually sorry about my mom was calling. Beeping in Russia, would you? I asked if you were functional during that 12 hour period? Oh, yeah. We call mom and dad. This is why we got her last during the flood No, I was functional. Actually, I was a functional method. For the most part, yeah. Made it to work. They're like are good what you do you can do during the day, that kind of stuff.

Perry 56:07
I know. I know, plain math is you know, it don't turn everybody into a zombie drugs do to you what the what you allow them to do to you? I was functional. We, you know, we went everywhere. I did everything I need to do. And you could you could tell if you really look but you know, most people couldn't even do. I gotcha. But those are the sounds were there though.

Scott Benner 56:31
Okay. All right. As I mean, we're almost an hour into this. I want to make sure. Am I missing anything from your story or anything you want to talk about that I haven't thought to bring up or direct us towards?

Perry 56:45
Oh, thanks. So that's pretty much it still an ongoing thing? And last thing, and and at the end of the year, we're chopping up to around the middle of all this.

Scott Benner 56:58
Do you think you're going to do you think you're going to be able to? I mean, it's that hard question. But do you think you're going to be able to handle the diabetes?

Perry 57:05
Oh, yeah, I got this. No, no, I do. I have to. I mean, it's like, posted on Facebook. I seen the other day, you don't know how strong your orangey hat.

Scott Benner 57:16
Yeah, it's interesting how many people you meet that have type one who who are more aware of their health now than they ever have been in their whole life. And, and how it kind of changes your focus and the way you think about things from eating to exercise and, and kind of everything in between?

Perry 57:34
Yeah, technically, now I'm actually live in the plane is live, you know, as far as you know, no alcohol, nothing like. And I try to watch what I eat and stuff like that and be moderate. And don't go crazy on sweets. And yeah, I'm trying,

Scott Benner 57:50
would you be interested in there's a whole series of episodes in the podcast with me and this woman named Jenny, who is type one for 34 years, and she's also a CTE. She teaches people how to take care of their diabetes. It's this whole series about kind of how to use insulin and, and how to manage food and everything. If you want. I'll send you a link to it. You can take a look, I think it would be helpful. Might help.

Perry 58:13
Absolutely. Yeah. Any any resource?

Scott Benner 58:17
Per you know. I don't know if you know, like, are you aware? I guess is my question. That you're, you're an interesting paradox, because your story from earlier in your life is it's insane. And then like, but you here in this moment, you're a reasonable, intelligent, thoughtful person. But you the stories you tell her about a person out of control. Like is that? Is that something you're aware of? Like as you're talking?

Perry 58:44
Oh, a different man. Now. This is the Perry that show this is the period that should have been here. This is the Perry that

Scott Benner 59:00
it feels that simple. Right, like a bad decision. And then last time, yeah, yeah. So what do you think would have helped you back then? I mean, honestly, like, you've been incredibly honest. Is this is this a function of? It doesn't sound like parenting. It sounds like your mom was concerned. Is it money? Is that is that access to things? Is it? Is it that kind of stuff, is it? I mean, I don't know how you grew up. Was there poverty involved?

Perry 59:27
Well, no, not really. It's I guess, down in South Carolina. That's why I moved to Kentucky because everything I wanted was five minutes away. I knew where to get it. I knew who to get it from, you know, I mean, it's just too accessible. And then when you move somewhere and you don't know nobody makes a lot harder.

Scott Benner 59:47
Oh, the Kentucky move was literally for for drug use and things like that. Yeah, yeah. Okay. So you move to where the where the action was. I say this So now just getting clean, and then looking back on your life was enough to was enough to, to to keep you going and that I mean, it's great. How long has it been? Like? That's a good question since like, math or something like that, like, what's the last drug like that you?

Perry 1:00:16
What I think February be six years.

Scott Benner 1:00:19
Wow, that's impressive. Wow, that's

Perry 1:00:24
Buller grit to

Scott Benner 1:00:26
Yeah. And but the regret doesn't push you back to using?

Perry 1:00:30
No, now I'm past that part. I mean, what's done is done. I can't change that. So I don't focus on

Scott Benner 1:00:36
it. Dude. That's a great attitude. I was just, I was just editing an episode last night with this young girl. She's like, 21, she's got a kid, she's already been divorced. She did, she grew up really poorly. And she just took her life over, like a young girl, like just she figured out what which way was up and what the right thing to do was, and she just grabbed it by the balls, and she's doing it. And it's really, I was stunned when she was talking is a long conversation she and I had, and as I'm listening to her, I'm like, how did this girl just figure this out on her own and put herself in the right direction? She just stays the course. You know, but now you're saying the same thing. You know, it's, um, I think it's interesting for people to hear because it'd be easy to write you off. You know, it'd be easy to go back six, seven years and look at you and go, This guy's not gonna make it. But But you did. You know, and for no real reason other than you just decided to do it. Right.

Perry 1:01:33
Eventually, you get sick and tired of being sick and tired.

Scott Benner 1:01:37
Just had enough. You were like, that's enough. No kidding. Dude, it's

Perry 1:01:41
I want the last year that I was doing it. I wanted out. I didn't want to do it. I didn't know how to quit because I was mixing it with morphine and heroin and

Scott Benner 1:01:53
like, like, like hospital grade morphine.

Perry 1:01:56
Where Yeah, but my buddy had cancer. So he had he had the script. Oh, my

Scott Benner 1:02:03
God. Look at that. Listen, you're you're definitely have a lot of annuity.

Perry 1:02:08
He had he had to he had the teens. He had the Barney's but we got to Barney's the 30s. He had the gray goes what we call the 60s.

Scott Benner 1:02:16
He had has he passed since then. Yeah, he's gone. I'm sorry. No. Wow, it didn't even

Perry 1:02:25
last that last lost all my friends. I lost my little brother. And then just a couple years later, that guy with the cancer. He was one of my best friends lost him. Then the other guy, one of my friends. He killed his co just losing friends later. Ended up really being on my own. Because I was the only people

Scott Benner 1:02:43
that I talk to. Yeah, man, you're surviving.

Perry 1:02:47
Because Caleb, Caleb, that's his name. The boys cancer heat comes spent. He spent more time in my house than he did it his own.

Scott Benner 1:02:53
How old was he when he had cancer?

Perry 1:02:57
I mean, how old was he there was none with cable had that. Name was nine when they diagnosed and he even went to Mexico with him and stuff. And he beat it for a few years, you know, went to remission then he just come back with a vengeance and

Scott Benner 1:03:14
a lot of bad luck for a small group of people. That's for sure. That's terrible. Well, I'm sorry to hear about that as well. But but I'm telling you like, as far as ingenuity goes, if you said to me right now, Scott, you gotta go find morphine. If you find morphine, I'll give you a million. I wouldn't know where to get morphine from. Like, that's, that's amazing. Like it?

Perry 1:03:33
Oh, I can get the hill I can eat so right. I know where it's going.

Scott Benner 1:03:40
That's really something very impressive. Like do you spend any time thinking about what you've accomplished?

Perry 1:03:47
Sometimes Yeah, that's what I've tried to think about because I've granted a lot of things I've tried to think of the positives and not the negatives the things that I can't change that are over with.

Scott Benner 1:04:01
Yeah, I mean, I hope you're able to keep doing that because I mean, honestly, what you've described is it's a huge effort that you got to this spot I think it's incredibly unlikely to and here you are, I mean, six years is a long time to just decide I'm not doing that anymore and then honestly not do it anymore. It's really something it's I'm really It's oddly I'm oddly find myself very impressive what you did.

Perry 1:04:27
No, I didn't go to I didn't go to rehab. I locked myself in a room for three weeks.

Scott Benner 1:04:30
Yeah, I mean, you've dug a hell of a hole for yourself to climb out of and you found your way out of it. That's

Perry 1:04:36
my mom. My mom and dad both over there. You know, they're they're really good parents. They always have been but I was at the point to where they couldn't do that for me. I had to make the decision. was all me in there still, my mother and father both do a real good support system but my mother more than anything because just her knowledge Diabetes. Because when something goes wrong, I can't hurt. She knows. She know just as much as my daughter does, and she might know more. But she's very intelligent when it comes to type one.

Scott Benner 1:05:15
Okay. Wow. You know, I mean, I hear you're talking to your dad off and on right, but like, do you think they ever even privately then didn't say to you do you think they ever gave up on the idea that you're gonna be okay? Or do you think they always believed in you that you would like, I'm trying to put myself in that position,

Perry 1:05:35
then they never get they never gave up on me. They always loved me. And they just they knew, though, but it's a decision I had to make. But deep down, I'm sure they thought, you know, of course, he's going to come through this. And they I mean, they. They're really good. My parents are great. I mean, I grew up in a we're in a wonderful home. Y'all had a great childhood, good parents and stuff. So that's not where it was. Yeah.

Scott Benner 1:05:59
You never felt unloved or anything like that? No, Lord, no. That you guys were just selling in views and as kids and trying to make money and, and keep it going, right?

Perry 1:06:11
Yeah. Must be honest. That was like 20. Yeah, about 25 or 24 to 27 mission. Right? Is the heart of the hard hard stuff.

Scott Benner 1:06:24
Let me ask you a question. Like selling drugs where you grew up? Is it like somebody else saying, Oh, I always knew I was gonna go to college. Or I always knew I was gonna get a job at the place down the street. Like, did you did you grow up? That was that just seemed like a viable business? endeavor for you?

Perry 1:06:42
Oh, no, that's nothing I really thought about this is something I kind of fell into how I got started with the instance I was looking for, I was looking for a job I was on Craigslist. And I seen an ad for a smoke shop. And they needed a just need someone to help manage it and run it, you know, like sell pipes and bombs knowledge, you know, I mean, and I contacted him and went down there. And he said he was just asking questions, I've asked him and he had a few things in his store already. I said I'd go out there and tell you exactly what to do with it or single one of these. He said, Okay, show me so I went out there I said you do this or this do this or this. And he almost got us in trouble one time because we sold crack pipes because we'd sell we sell at crack pipes a day. Or more. But sometimes you do your chore boy years. Know that stuff. The that's that mate that stainless steel stuff you washed dishes with?

Scott Benner 1:07:47
Oh, no, I do know. Yeah. It's got like a scouring pad.

Perry 1:07:52
You know, the one that's just the one that's just metal,

Scott Benner 1:07:55
right? No, no, it's like there's just no like, soap or anything like that on it.

Perry 1:08:00
Yeah, no, no fabric, no sofas, just a straight piece of like balled up metal. They'll take that and wrap their crack rock around it and stick it in the pipe. And because it helps to vaporize it faster, get hotter. Well, he had both of them. He had the pipes in the tour boys sitting right side by side on the shelf. I said you hate this, this suggestive selling what they call it right? I said you can't do that. I said we can sell both of these. But you got to put them in different places.

Scott Benner 1:08:28
You knew the ins and outs of the rules already. That's interesting.

Perry 1:08:33
Yeah, his store was big enough that we all we did, we kind of just sectioned it off and made another store next door and got a business license. We did it legit and everything and that's amazing. I was making. I was making a lot of money.

Scott Benner 1:08:48
And the cops know, but they don't do anything.

Perry 1:08:52
Well, at the time, it was legal. And you know, then they started banning chemicals in it. Well, then they start changing it and they change this chemical make it a different one. And then they started banning another chemical where they change it what ventually they ended up banning it completely and that's how they the legality become the way it was. Become a scheduled drug at that point.

Scott Benner 1:09:16
How worried should people be about fentanyl in their drugs? Is it everywhere but

Perry 1:09:25
honestly, the fentanyl hikers more they're hyping it up more than more than he is because now I don't condone anybody using fentanyl out side of a medical place. But as far as medically, fentanyl is the best medicine they got I dislocated my knee they gave me fentanyl right in the hotel and the floor. Is they in this not only is the only drug that is measured in micrograms it's not measured in milligrams.

Scott Benner 1:09:56
So use correctly it's a really it's a valuable drug.

Perry 1:10:00
I absolutely hate when they when they took my bankers out after I found out I was in pain they gave me some fentanyl in Britain was a great drug it used correctly. The reason it's so dangerous is because like I said, it's measured in micrograms, it takes 1000 micrograms to make a milligram. So you can see how potent that is. Yeah.

Scott Benner 1:10:26
Well listen that well enough, you should be able to count carbs.

Perry 1:10:32
I just kind of learned how much is in each thing.

Scott Benner 1:10:36
So when you're thinking when they cut, so when they cut drugs, illegal drugs with fentanyl, it's it's more of a the bigger problem is that they're using too much of it. And that's what people are doing on?

Perry 1:10:47
Yeah, they're using it the correct way because that's about the cheapest thing is coming out in Mexico. It's coming from China too. It is, it is a problem but they're hyping it up more validity is okay. Because I Okay, for example, I still see drugs from time to time, you know, I don't do but I still see them from time to time. I mean, some would be annoying it interesting.

Scott Benner 1:11:17
No, I couldn't be like I got placed the place

Perry 1:11:20
I gotta I gotta I gotta buddy. He he has some coconut. Oh, go in. They would they wouldn't know family. I mean, I haven't experienced that yet. So it's not as much of a wave as they're saying it is it is that out there. But interesting.

Scott Benner 1:11:36
Wow. What do you think of the people who talk about doing drugs safely? Like testing your drugs? First? Make sure it's what it says it is? Do you think that's a good idea?

Perry 1:11:47
Well, you mean, is it because library loads, they

Scott Benner 1:11:49
actually make test kits, like you can test your care cane. You can test your heroin. So like people who are going to use those drugs anyway. But they're getting them from places they don't know they

Perry 1:11:57
Oh, that's what you're asking. Yeah, he'll know why test and nothing.

Scott Benner 1:12:04
I had a girl on it said that they have

Perry 1:12:07
you know that that test is going to cost money? Oh, hell no. I could put that money towards something else. You know, I'm saying

Scott Benner 1:12:14
that this? These are fancy. Kids use what you're telling me? Is that using these?

Perry 1:12:19
Yes, kids and silver? Daddies purpose is

Scott Benner 1:12:24
interesting. It's interesting to hear different perspectives on on the same topic. So I appreciate you talking about like this. Okay, I mean, if you don't have anything else, I don't think I have any other questions. But I really appreciate you doing this.

Perry 1:12:40
No, I mean, I had a good time. Good. Oh, I'm gonna appreciate you getting on show.

Scott Benner 1:12:44
No, you kidding me. I, first of all, the, you know, the person that directed you to me, I'm a big fan of him. And so I was excited. To do that I'm still looking for like we do these episodes called after dark, which yours easily qualifies for? Just because, you know, people need to know that we're going to pretty much talk for an hour about drugs and doing illegal things. But, but I still am looking for someone who's been in prison for a long time with diabetes. I have found five people over five years. I haven't gotten one of them to follow through and record yet. And it usually ends up being a probation issue. Like they very they don't want to get in more trouble. So they kind of say no at the end. But anyway, that's one of the things I'm looking for. I figured I'd put it in this episode, in case anybody listening has a no somebody

Perry 1:13:36
I had, I can name you 10 TMO friends that are in prison right now. I still check from time to time. Everything's public knowledge.

Scott Benner 1:13:45
I need them to have type one though, Barry. Oh, I

Perry 1:13:48
know that. I can. I can find you when are you? That's what I'm saying. I'm not gonna find you. Let's go

Scott Benner 1:13:55
see if you can find that morphine. I think you could find that. It's partly why I brought it up. Like he might be able to do this.

Perry 1:14:01
Well, I'll get I'll text him here in a minute. He's got a phone. They all got phones in there. They'll find it take it, they'll get another one. They will never beat it.

Scott Benner 1:14:10
Yeah, just they just keep cycling like burner phones through this through the guards.

Perry 1:14:15
The guards. The guards are bringing it in because there's too many of them. There's too many palms being brought in. There's too many around. There's no way to that many phones are coming and people's assays. So

Scott Benner 1:14:27
see you do you think you think the guards do it? Because it's a moneymaker? Do you think they do it because

Perry 1:14:35
I just go and tell you I know for a fact one of the guys I used to run with Hang on, say his name don't like it, but they would make what they call bombs. It was a cell phone or prepaid card, some tobacco, some rolling papers, maybe couple of little things. And they wrapped it up tighten these little balls and they call them bombs. And they take about 25 or 30 of them and I'm To the guard that he gave them to.

Scott Benner 1:15:02
Okay, that's it. Yeah, it's everything so damn interesting. I found I found this. I found this conversation. Absolutely fascinating. I appreciate it very much donate it. While we're done talking, I'll point you towards there's there's

Perry 1:15:16
there's a lot there's a lot it's grimy and then a lot of people don't talk about that. Well, people don't even know because they don't live that life like I mean, I was I was in the trenches for two years.

Scott Benner 1:15:27
Ever see anybody killed?

Perry 1:15:30
Ever seen by killed? No, I've been held at gunpoint.

Scott Benner 1:15:33
You've been held at gunpoint. Yeah. Have You Ever Have you ever did you use the gun as part as what you were doing?

Perry 1:15:40
I was actually on my way to go. I was actually on my way to go kill him. Because I was so mad. He held me at gunpoint. He robbed me. And then I went back because I was able, I was in a place that I'm pretty rough area. But I was allowed to be in a rough area because I knew enough people. And he's just living young kid. He was only 16 years old and scared. That's what scared me because he was shaking. While he was holding his gun. I said, Oh my God, he's gonna shoot me. Because he's scared because he was scared, right? And then he ended up letting me go. And then I went to my friend and told him exactly what happened. And he told him who it was. And I was actually gonna go kill him. And then ended up somebody GreenBook he tried to rob somebody else in Greenville County seen him and then Graham kind of picked him up. So they probably saved me a prison sentence.

Scott Benner 1:16:30
Wow, you were saved. And he was saved by Him getting arrested. Yeah, that was gonna kill him. No kidding. By the way out of revenge, or because you didn't want him coming back and doing it again and killing you by mistake.

Perry 1:16:42
Just mad because I was allowed to be in there. And he's just lovely young kid didn't know who I was. Gotcha.

Scott Benner 1:16:48
I say. So a bit of a respect thing.

Perry 1:16:51
Yeah, he pays me off. Because Oh, he got in a lot of trouble. Because most of the people that I knew in there once they found out

Scott Benner 1:17:01
yeah, they got in trouble. He found that on the other end. Do you looking back on this? Do you recognize that person who would have gone and kill that kid? Me? Yeah. You still recognize where that all came from? But do you think you could do it now? Do you think of it happened again? Right now? Do you think you'd have the same reaction? Dropping right now? Yeah. So there's there's a line you're not you're not want to let somebody cross?

Perry 1:17:27
Now it may like says May in the respect thing, because that's something like it or spit in my face. Oh, my God.

Scott Benner 1:17:35
It'd be a different level. I understand. Yeah, probably. I can't thank you enough. Man. I really appreciate you doing this.

Perry 1:17:41
Thank you. No problem. He'll bring me back. Sometimes you need me.

Scott Benner 1:17:44
I think I might. I'd like to thank Perry for coming on the show, sharing his remembrances of his brother and all of his stories. Absolutely amazing. Thank you very much, Perry. I want to thank Dexcom, makers of the Dexcom G six and Dexcom G seven continuous glucose monitors, and remind you to go to dexcom.com forward slash fuse box to get started today. Also those diapers sorry, also those diabetes pro tips, and all the other series at juicebox podcast.com. Or by searching your player. Go find them. There. I listened. I can sit here all day and read you listen to reviews about the protests and the other series that would blow you away. But just go check them out for yourself. They're free. Go take advantage of them, please. And if you're just new to the podcast, please subscribe or follow in a podcast app like Spotify, Apple podcasts, Amazon music, audible anything really anywhere. You can get audio you can get the Juicebox Podcast when you find it. Subscribe and follow please. I don't think there's anything else. Oh, there's a survey. Sorry. Survey for podcast listeners is at some funky link. Oh, did you know when you click off the page dexcom.com forward slash juice box. It offers a free 10 day trial of the GS six. See to see if you're eligible for it. Anyway, there's a little tip. Anyway, this survey, right? I said anyway, a lot. I'm gonna just put the link in the show notes. There's a link to a survey. I'm trying to find out if the podcast is valuable for you around your health and well being. I appreciate if you took it. It's just for me. Nobody else will say it. We might share some broad results on social media and stuff like that, but nobody's going to know it with you. It would be really valuable for me if you could take the time. Thank you so much. I will be back soon with another episode of The Juicebox Podcast.

#824 Haaech Bee A1c

Clare has type 1 diabetes and a delightful accent.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 824 of the Juicebox Podcast

Claire is an adult living with type one diabetes, she got the diabetes while she was pregnant, and she has an amazing accent. This is pretty much what you need to know to enjoy this episode. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. If you are a US resident who has type one diabetes, or is the caregiver of someone with type one, please take the survey AT T one D exchange.org. Forward slash juice box it will take you fewer than 10 minutes. It will help you diabetes research and me it's a trifecta of goodness T one D exchange.org. Forward slash juice box. Join the registry take the survey. That's pretty much all you have to do. You can do it from your house. Wave unprecedented time left What should I do with it? I'm so indecisive today. Oh hell no, I'm out of time. All right, hold on a second.

This episode of The Juicebox Podcast is brought to you by touched by type one. This is a terrific organization helping people with type one diabetes, and all they want is for you to check them out on Facebook, Instagram, where it touched by type one.org This will take you look you're on your phone constantly. I know you are okay touched by type one.org Just go look, they're amazing. You're gonna get they're gonna be like, Oh my God, look at all the good stuff they're doing. And that'll be it. Sorry, The podcast is also sponsored today by ag one from athletic greens. With just one scoop of delicious ag one I start my day off every day with a green drink that fuels me and tastes good. Athletic greens.com forward slash juice box.

Clare 2:18
My name is Claire. I'm 35 years old and I was diagnosed with type one diabetes at 26 weeks pregnant.

Scott Benner 2:27
2825 years old.

I'm 3535 Excuse me. Yeah,

how long ago were you pregnant?

Clare 2:34
So that was September 2020. I was 26 weeks pregnant at the time. And I kind of found out by accident. So I went to the doctor and I just kind of mentioned Hey, you know, my skin's really itchy. And he sent me in for some other tests. But at the time, he was like, you might as well do your gestational diabetes test at the same time. So I went and I did that feeling fine. Like I really didn't have any symptoms looking back and and my blood sugar was 20 mm allel an hour after the drink that they give you. So when he seen that he knew right away that it wasn't just gestational diabetes. And when I got into the endocrinologist, she ducked pretty quickly that my mom was celiac. I had thyroid issues, so she kind of knew that everything pointed towards type one right away. So yeah, it was a huge shock. My first pregnancy definitely wasn't something that I was expecting.

Scott Benner 3:42
I guess not. What kind of thyroid you have hypo Hashimotos.

Clare 3:46
Oh, hypo. So I don't like how I found out about the thyroid was before I got pregnant. I just got bloodwork done. And my doctor said that I was borderline and just because it was trying to get pregnant, let's just put you on some medication. And so it was on a really low dose. And that went kind of up in pregnancy. And now it's I think it's like point seven, five, I'm taken daily. So like I'm just I looked up my last thyroid test here. It's 1.76. I don't know if you know what that means. But it's the range. So that's your TSH. That's my T. TSH. Yeah. So it says it's a range. I don't know. It's hard. I think that was the hardest thing for me getting diagnosed was there were so many different opinions from doctors especially that is really hard to know who to listen to and what advice to take

Scott Benner 4:45
what was happening. What were people saying.

Clare 4:48
Like a lot of stuff was kind of like, No, it can't be it's not going to be type one. Like it's likely not going to be type one and just my GP versus what my endocrinologist was See, and even the last time I went to see her was maybe six months ago when she was like, I really just don't think it's type one like it's, you know, you're not on insulin right now. Like, I don't think you know, you might never need it and, and then just from having a hypo, in the hospital I remember when I was in labor, one of the nurses telling me that maybe if I didn't drink as much orange juice, and I kind of looked after my diet, that things wouldn't be so bad, I wouldn't have the diabetes. So that was kind of a shock to the system, because it's all it's all new. And at the time, you don't kind of realize that it's out of your control, you kind of have you hear a nursery doctor tell you something, you tend to take what they say seriously, and it's kinda, you have to develop a thick skin very quickly, I find

Scott Benner 5:44
I have a question, do you drink in a strange amount of orange juice? No, I

Clare 5:49
was just drinking a little bit for a high when I was in labor, in the middle of a pandemic, with a facemask on not knowing what the hell was happening. Um, so it was kind of like not the right time, even if it was something caused by diet to even bring it up.

Scott Benner 6:05
You don't think that was a good time?

Clare 6:09
Like just bedside manners was lacking. And like, typically, I'd be very quick to kind of, you know, talk back, but I think you're a little bit more vulnerable when you're in that situation as well. Right? Well,

Scott Benner 6:19
Claire, is there anything about you like visually, that would make someone think you're not taking care of yourself?

Clare 6:24
No, I don't think so. I mean, unless I'm seeing a different version of myself and everybody else is seeing but I'm pretty healthy day to day and I don't know I think like people as well just sometimes like to have opinions maybe out of self importance and kind of don't use tact and yeah, just when someone's in labor, it's never a good time to say anything to them, like just be kind hold their hands, right?

Scott Benner 6:49
If have to be honest, if someone would have said that to me, or my wife and that situation, I would have been like she's leaving that one right there. Get her out. She's got some rock solid orange juice advice here. But other than that, I think I need her to go wow, that's, that's really interesting. Did that stick in your head? Or was the moment so crazy, you kind of were able to let it go in the moment.

Clare 7:11
Um, I in the moment, I let it go. But after my daughter was born, like that stuck with me, because I think just getting the diabetes in pregnancy. And then another nurse told me that I was having an anxious reaction to it, which I was because like, I was terrified, right? When I find out first, my first concern was like, okay, is my daughter, okay? Like, I need to make sure it seems good with her. And you feel a lot of guilt, right? Because you're responsible for this little life that's growing inside you. So I think it was after it was the postpartum period. And then just because taking insulin during pregnancy was so difficult. It felt like I was constantly trying to keep my bloods up. So when people were trying to like you think you take insulin to to stop the spikes to keep your blood down. For me, it felt like that was like the first kind of 20 minutes. And from then onwards, I was constantly eating to try and keep my blood up. And at the time, I had just kind of come off the internet and everything because I was like, I can't look up any more bad news about diabetes, like this is awful. I was looking in the wrong places. And so I kind of my idea of what it was like to live with diabetes, I think was very skewed by not understanding the challenges in pregnancy. And then after birth, just going through the process of thinking that I needed it and then not needing it anymore. And then just kind of watching my blood constantly because I started having hypose After birth, but I couldn't feel them, right. So I had this new like tiny little baby that was in NICU, and she was okay. But when I was like holding her, I put her back in the car one day, and I injected myself with insulin to have lunch and then all of a sudden my Dexcom has gone off saying I'm at 3.6 and I've taken a load of insulin thinking I'm about to eat, and I didn't feel a thing. So for me that was kind of scary, like not knowing and not to see and how quickly like you could drop that afterwards. So that kind of stuck with me the first few months with Ava then I came off insulin completely. But there was always that fear like this is gonna start again and when will it start? And like my quality of life was so gone for the 10 weeks that I had it during pregnancy, there was a lot of fear around that. So then one day, I think they stumbled like I started looking up on YouTube and you know, like different people's experiences with diabetes, but I couldn't find anybody that kind of had the lifestyle that I had which was like a lot of traveling a lot of hiking a lot of drinking wine with my friends. And then I stumbled across Jill on this podcast, and I was like okay, there's a me like I get this and she had just had a baby and every Thanks. So I think it was from then on I started like, learning a lot more about it and you know how you can manage it and that it is manageable. And for me then that was like the starting point of like, okay, things are gonna be okay, because the future is like unknown right now because I'm not on insulin. But I know that like it's around the corner. I just don't know when

Scott Benner 10:20
Yeah, I want to dig into it a little bit. And I want to find out too, just very quickly, Do you by chance live in the fairytale land of do lock? And was that nurse a gingerbread man? Because that's not

Clare 10:31
JB, but maybe it was just all the others.

Scott Benner 10:36
I think I'm just saying that I love your accent really is but

Clare 10:39
I'm going from Ireland. I live in Canada now. But yeah, that's where my accent is.

Scott Benner 10:46
It's it's lovely. And I just and you're in Canada.

Clare 10:51
Yeah, I'm in Canada in Alberta. I've lived here seven years now. So I came here with my then boyfriend. He's now my husband. And we have our little

Scott Benner 11:01
Canadian. They're nice. And Peter Canadian.

Clare 11:04
Yeah, we made a Canadian, she's a little souvenir.

Scott Benner 11:09
You should have just got one of those pennies, you're rolling through the thing and it flattens out makes the token would have been easier, maybe. So I want to just I want to pick through the entirety of this. So you're, you find out that you have hypothyroidism? Have you ever been tested for the antibodies? That would tell you if it was Hashimotos?

Clare 11:31
I don't believe so. With that, like what benefit would that

Scott Benner 11:36
have would let you know that that's an autoimmune issue.

Clare 11:40
Okay, so it's just something I kind of should look out for my own.

Scott Benner 11:43
Yeah, I might want to know, and and you said there's celiac in your family, or do you have it as well?

Clare 11:48
My mom got diagnosed with celiac disease when she was probably in her late 40s, early 50s.

Scott Benner 11:56
So she has an autoimmune. Anybody else? My aunt

Clare 11:59
has Crohn's. That's autoimmune.

Scott Benner 12:01
Yeah, you.

Clare 12:05
I have the thyroid then. And now I have type one diabetes.

Scott Benner 12:08
But your day, but your diabetes doesn't need insulin?

Clare 12:11
No. So it's L A D A, they call it? Yeah. Okay, yeah. So apparently, it's just a slower progressing version of it. I actually never heard of it. Like I always thought it was just children that got diabetes. And there seems to be like varying speeds that it progresses at. So since I found out I had it, there's different groups. And you know, some people are on insulin right away. Some people go years and years without insulin. So I don't know where I fall. I'm on Metformin. Now the last kind of two months, and that's helped when I got my COVID vaccine, my blood started to kind of go off and they never kind of came back down. So the Metformin is helping I do spike, I wear my Dexcom all the time. So I can kind of see you know, that I do go higher than I want to go. But anytime I get my HBA one seed on, it's usually like around the 5.2. Mark.

Scott Benner 13:11
So what's a spike look like to you? Is it usually after meals or not necessarily?

Clare 13:16
It depends. So if I had like oatmeal on its own, I'd probably go up to maybe like 12 or 13. If I have like a little bit of oatmeal with like peanut butter, and I have some Greek yogurt, I'll probably stick around like the seven or eight, and kind of come back down and probably like sit between five and six

Scott Benner 13:36
here. Because the 13 is like 230. I'm trying to make sure everybody understands the sevens about 126. And a five would be 90. So if you eat certain foods, you go up to a 13, let's say how long does it stay up there?

Clare 13:51
Not long. So I think like the longest I've ever been like pretty high, like maybe a 14 would probably be like two hours. And then it just it comes right back down by itself. So where I'm at now is like I kind of know what to avoid to keep my blood in range. And I can do that, like I've gone through everything because you heard some people say and like this was hard, as well as like go low carb. And for me, especially now because we want to have another baby, I'm really nervous about the fact that I'm not on insulin because I don't know what's going to happen those first weeks and there seems to be a lot of stuff out there. Like if you eat low carb, it's really good to prolong your honeymoon, it'll you know, help you and then there's other people saying well, low carb is really bad if you're trying to get pregnant. So I'm kind of just somewhere in the middle right now. Like I would eat I think like a moderate amount of healthy carbs. And then I obviously just have treats like the odd time I'll have like a couple of beers or ice cream or something knowing that that will spike me but that it will come back down pretty quickly.

Scott Benner 14:56
Is the plan that one day when it doesn't come back down quickly you start using insulin.

Clare 15:01
Yeah, I mean, my endocrinologist has been really clear with me that like insulin is definitely in my future. It's just that she doesn't know how far away that will be. She said, like, because I got the autoimmune like the antibody test on so I have the guard antibodies. So she said like, it's just a case of time, but they don't know like, that could be 10 years, it could be a year like there's no way to tell.

Scott Benner 15:26
Right? Okay, what made you want to come on the podcast.

Clare 15:33
The big thing for me was because like, I was so distraught, just because of how how I felt on when I was pregnant with the insulin, like, I felt feel like at the time, like I couldn't exercise I couldn't, you know, do all the things that I wanted to do, because my blood was just constantly going down. And I really felt at the time that like, Oh, God, like, my quality of life is gone, like, what am I gonna do? It took me like one recommendation to hear the podcast, just to kind of have a change in perspective and understand that like things were going to be okay. So I think just for me, like there might be somebody, there might just be like one person out there in the same situation. And maybe they just need to hear that someone else has been through the same thing or find something like relatable between our stories and just kind of know, like that there's support and that there, there is like a light at the end of the tunnel, like being pregnant isn't the best time to get diagnosed? I think with anything. Yeah. You know, and especially because you go through all these like postpartum issues as well. And at the time, you don't realize that your hormones are going completely crazy. And but just I think it's just really helpful. And anybody that I hear of now that, you know, I know that they have diabetes, or that they're struggling with diabetes, I'm like, You need to listen to the Juicebox Podcast, like just listen to it. And you just, I just, I don't know, I think it's like before diabetes, like you'd really want to meet like a rock star, somebody famous. And I'm like, Oh, my God, I get to meet like, the owner of the Juicebox Podcast, like this is amazing, right? Like, you're like Barney. Oh.

Scott Benner 17:11
Well, I appreciate that. Because Because you're Irish. And because you said Bondo. That seems like it's a big deal to me. Well, thank you, I, it's an honor to meet you as well. I'm very happy to hear your story. And I, I want to understand a little more. So 26 weeks, what's the first sign that make somebody think you have gestational at that point.

Clare 17:34
So looking back now, I would wake up in the middle of the night, thirsty, maybe for about two weeks before I went to the doctor. But I had two colleagues around me at the same time that were pregnant, and they were thirsty all the time. They needed to pee all the time. They were tired all the time. And so I didn't really know anything, like I wasn't tired. I had good energy. When I say I was thirsty, it was like I'd wake up in the middle of the night once need to go to the washroom and drink water. And that would be me fine until the morning. It was the itchy legs that kind of sent me to the doctor. And he it was honestly all by chance. Like he thought it was something to do with my liver. And he just said, Hey, get your diabetes bloodwork done at the same time. And then because it came back high, he was like, Okay, we need to look at this further.

Scott Benner 18:28
How much did your legs itch?

Clare 18:30
I'm like, they were pretty bad. Actually. Yeah, I kind of felt like my skin was crawling. And apparently that's like common, there's some condition you can get with your liver in pregnancy that can cause that. But like a lot of people and that's another thing, like just trust your gut, because a lot of people were like, oh, hn is normal and pregnancy. It's fine. It's just part of it. But I think that probably was a symptom of the diabetes just kind of coming through.

Scott Benner 18:55
Were you retaining a lot of water? No, no,

Clare 18:58
no, no, honestly, like the week before I was diagnosed, I was up at 5am in the morning and I didn't get to bed I think until like midnight that night and I was like active like there was I was flying it like I was in the best health of my life. So I wasn't expecting or anything to be going on underneath the surface.

Scott Benner 19:19
Well you got lucky with a doctor being so thorough. So

Clare 19:23
so so lucky. And even just like with my endo because I've I've known of a lot of people since then that are either toll is just gestational and it's kind of forgotten about and I know of an awful lot of people as well that are given the wrong diagnosis of type two. So they spend years kind of battling with diet and you know, trying to sort it out thinking it's, you know, something to do with what they're doing when it's actually just misdiagnosed type one as well. So I was really blessed.

Scott Benner 19:54
Yeah, no, I mean, that's what I keep thinking when you're talking like this guy could have said, Oh, she's probably just retaining water and And you're itchy and whatever. Or you just said, Oh, okay, well, let's go test for this thing that he was thinking about about the liver. And then that would have come back negative and he would have been like, Oh, your legs edge. But instead, man went for it, like just did the right thing.

Clare 20:12
He knew, but so it's really weird because when I got my first visit with him, he was like, so let's talk about your liver. And I was like, What are you talking about? And he was like, Oh, your hepatitis? And I was like, No, I don't have hepatitis. Like, I know I don't I've had the injections. Like I've traveled all over the world. And but he was actually like, a consultant like a specialist. And I guess somebody messed up a blood results, and got confused. So I landed in with him, so it was just funny how it worked out that he was a specialist in pregnancy with conditions. And that's probably why he picked up on that as well. So quickly,

Scott Benner 20:51
did they say cholestasis? When they were talking about your liver? Maybe I can't even remember the only thing I can find while you're talking kolesar c h o l e s t a s is of pregnancy is a liver condition that occurs in late pregnancy conditions apparently

Clare 21:10
it's common. Yeah,

Scott Benner 21:13
intense itching without a rash. How about that?

Clare 21:16
Yeah. So well then it's your first pregnancy so you've no idea what's going on. Like you're really just kind of on a wing and a prayer right? Yeah.

Scott Benner 21:23
But it's so when they get your blood sugar under control. So when they get your blood sugar under control to the itching go away?

Clare 21:33
Yeah, it did it did when I was on insulin. And it hasn't really come back I had it back for a little while and postpartum but I think that was just hormones. Like just dry skin.

Scott Benner 21:44
Okay. So once he gets this test back, he starts you on what what what's the medications like? Use a Basal insulin or just a long acting

Clare 21:56
on faster actin? Yeah, so I met with the endocrinologist in the hospital the same day. I think when I was diagnosed my HPA once he was like a point eight.

Scott Benner 22:16
Look, if you're anything like me, you eat like a monster, a garbage monster. And then you lie to yourself and you say no, I fine. Well, I realized one day, that's not true. And I should stop acting like it is. If I'm not going to eat the way I'm supposed to. At least I could take a green drink. That would help me and I tried a couple and they tasted like hot garbage. So I stopped doing it until I found ag one from athletic greens. And I'm sweating. I'm sweating on a stack of Bibles. It tastes good. And trust me if it didn't, I wouldn't be able to drink it. I am that person. Anyway, ag one is lifestyle friendly. Where the Eat keto paleo vegan, dairy free or gluten free. It has less than one gram of sugar per serving no GMOs, no nasty chemicals or artificial anything's. It supports better sleep quality and recovery. And I take it because I don't think I'm getting enough vitamins in my diet. To make things even more interesting for you athletic greens is going to give you a free one year supply of immune supporting vitamin D, and five free travel packs with your first purchase. All you have to do is visit athletic greens.com forward slash juice box. Again, that's athletic greens.com forward slash juice box, take ownership over your health and pick up the ultimate daily nutritional insurance. That's what I did. You could do it too. There are links in the show notes of your podcast player. And links at juicebox podcast.com. To Athletic Greens touched by type one and all of the sponsors. When you use my links, you're telling the advertisers that you found out through the podcast. And when you do that, they keep buying ads and when they keep buying ads, I get to keep making the podcast and you get to listen to the podcast for free in that great athletic greens.com Ford slash juicebox touched by type one.org a second ago when I said that's what I did. And you could do it too. I heard the Tony Stark quote from the original Iron Man movie. That's how that did it. That's how America does it. And it's worked out pretty well so far. Anyway that has nothing to do with this. Let me get you back to Claire

Clare 24:24
when I was diagnosed my HPA when she was like 8.8 So like not like hugely over I think they say like dunk over seven when you're trying to get pregnant, I believe is what you're kind of tools. And so they started me on long action, short action right away. And my goal was to get under 6.8 mm oh well, two hours after eating. So like I would eat my blood would spike but as long as it would come under the 6.8 after eating I was told that was okay, but now I'm kind of like, like I didn't know by Pre-Bolus And I didn't know about like, there was no kind of you know, play around with your insulin like figure it out yourself and I was very much just kind of like doing what I was told but then constantly feeling like I was trying to keep balls in the air that was my blood sugar and it was just it was always dropping like I couldn't I remember one day just even going across the road to go into winners and I was finally in the office. And then I was having like a Hypo before even got to the door of winners. So that's it was just like constantly up and down. There was no balance.

Scott Benner 25:33
Can I be honest with you for a second? Yes, Your accent is so delightful that I have trouble even wanting to ask you a question. I'm just so happy listening to you speak. And I know that this is not something you're aware of. But some but you're listening. You're not the first person I've spoken to with an Irish accent right? My favorite thing about it is when you say ah ba one C because it comes out hey ah ba ba and see like that God say for everybody right now.

Clare 26:01
Hey, HBA one see,

Scott Benner 26:03
I love it. It's my favorite thing.

Clare 26:05
That's hilarious because I think I sound like a 12 year old like me voices. So I

Scott Benner 26:10
guess it sounds like you're about to grant me a wish in a field. Right? Yeah. Oh God. But, but it's the hit like if I just spell it. It's like H AECH H. And then the B is like B E but it goes on forever. And then the a one C comes out very quickly. Do it one more time.

Clare 26:32
haich D A one see my best thing you've made

Scott Benner 26:35
my whole day. Thank you for I don't even care if your story's true at this point. Although What an odd thing to make up. Right, yeah. So you make it through the last month of the pregnancy pretty well, I guess their expectations were, I'm guessing that they're not going to teach you the ins and outs of diabetes that that much and you've only got a couple more months to go. And that they probably imagined that when you're I don't know, they're not thinking, are they thinking Lada? Or are they? Are they thinking type one at that point, like I'm trying to figure out when they get here,

Clare 27:10
they didn't really know like, they had no idea what would happen and yeah, they weren't because the first hypo that I had was really horrible. And I didn't know like what to expect and and frightened to me. So for a long time, I was more afraid of hypos than spikes. Yeah. And so I think, you know, like, the nurses were really supportive, and they kind of just kind of got me through at a safe level. And we knew that my daughter was okay. You know, she wasn't like too much overweight, like, Thank God, all of her Oregon's like, everything was fine. And so they just got me kind of through the pregnancy, the labor was really easy. Like, I didn't know any different. They just hooked me up to a drip. Like, I didn't even look up my blood sugar. They were monitoring it, and it was fine. And, and then after birth, my blood was spiking when I was eaten. So they had me, you know, oh, so that's the other thing like towards the end of pregnancy, my insulin resistance, obviously, like just dropped, so my insulin needs dropped. So they brought me into the hospital thinking it was a placental failure. But I guess it was just that towards the end of the pregnancy, you don't need as much insulin. And so I think I was like, down to like one unit of long acting. Yeah, that's

Scott Benner 28:23
been everybody's story so far right as it as it begins to end, and then boom, a lot of the ladies say that as soon as you deliver the placenta, your insulin needs change.

Clare 28:33
Yeah, so that was and then but I went straight back on insulin after birth, because I was eating and my blood was spiking. And then all of a sudden, a couple of days later, like I was just going low all the time. So they took it off me completely. And I still like I go through phases, like I'll go through like maybe a couple of weeks where my blood just retire like after my COVID vaccination, it was running higher. And you know, if I'm sick, I run higher. If I'm stressed, I can run higher. So it's kind of just like riding the waves and just kind of see kind of what happens

Scott Benner 29:06
to me again, in the process, where did the antibody testing happen?

Clare 29:10
Right away, like literally the day that I went into my endo because they knew just because of the autoimmune diseases and then she also said, just kind of by looking at me, I didn't like I was pretty slender. And so they kind of thought like, just to search for type one right away.

Scott Benner 29:27
No, and I remember you saying that now. It just It slipped my mind first. You really are you have me at a disadvantage. Because I if we went on a date, I would just be like, Oh, it's fine. Claire, say whatever you want. I'm just gonna sit here. I have a hard time wanting to even speak while you're speaking. English. My husband felt like he's not gonna do that. But that's a cause to him. You sound like his mom. Probably.

Clare 29:49
I probably do. Yeah, there's a lot of Yeah.

Scott Benner 29:54
Yeah, to me, it's just delightful. I you know, I feel like Shrek and Donkey are gonna walk out of the woods. sooner we're all gonna go on an adventure together. It's really fantastic. Yeah. It's wonderful. The Metformin, when did they like when did that start?

Clare 30:10
That started two months ago. So just Yeah, after the COVID vaccination my bloods kind of yours just sticking around like the 10 Mm, oh well Mark constantly. And that was maybe kind of for a period of two weeks. So they were my endo was just open to try and metformin because it kinda like it has helped other people with La da. And it has helped me like I definitely I'm back in the range I was before starting it and I even kind of eat like I'll get away with having a slicer tools on its own now, whereas beforehand that would kind of Spike me so I haven't had any side effects with it or anything, it's just been easy for me to take

Scott Benner 30:53
he went, he went right to the Metformin, he didn't say maybe more insulin, or did you not use more insulin because you're still experiencing times when you don't need it.

Clare 31:02
I'm still experiencing times where I don't need it. And also, like, I don't really, I want to avoid going on insulin just for as long as I can. Like, I have a really busy toddler right now like she's running around everywhere. I know that if I started on insulin now like my blood still goes like there's sometimes my blood is down like at five or like 4.8. So I just feel like, I'd rather go on insulin with my blood is higher than I kind of know that I needed. And maybe I don't have to deal with hypose as much because they kind of frightened me a little bit.

Scott Benner 31:39
It's interesting, isn't it? How this process changes you because a 4.8 is an ad six. And if I was wearing a CGM, and my blood sugar was always at six, I'd be so happy. Yeah, right. But it's

Clare 31:53
not always like it'll go there for a little while. And then it's usually kind of around the five and six mark.

Scott Benner 32:00
Right. But your your concern is I'm imagining that if you were using insulin, you would, it would be difficult for you to maintain this, this 4.8. And that you might get start getting low at a time where you're trying to raise so you're just kind of trying to cheat the system for a little while, right? Like,

Clare 32:17
why not cheat the system for a little while, like I just I want to, you know, like, learn how to be a mum first when my daughter like that was the biggest thing as well after birth was just not having to manage learning about insulin whilst trying to learn how to be a mother. That's kind of where I was at. And just like the freedom as well, right that I have now like, go go for drinks with my husband. And like, I know that once I start insulin, there'll be a learning curve there that I'll have to learn how to navigate all those different things in my life. So yeah, that's kind of like, the longer I can avoid it, the better.

Scott Benner 32:55
So are you? What's my question? It seems like you're in a really interesting place, right? Because someone's told you look, at some point, you're gonna have type one diabetes full blown. But for now, it's it. I mean, it's Lada. So it's taking forever and ever but one one day, you're gonna have that that insulin need. Is that comforting? And you're slipping into it slowly? Or is it upsetting, and you wish it would have just come on all at once, three years from now.

Clare 33:26
After the birth of my daughter, the first six months, it was really upsetting because I had my CGM and I was always watching my blood go off. And if it spiked at all, I was kind of thinking oh my god, tomorrow is going to be the day tomorrow is going to be the day I'm not ready. Now I've just gotten more used of the idea of it and and kind of grateful for the time that I have now that I don't have to kind of stress about it. Yeah.

Scott Benner 33:55
How long did it How long did it take for the panic part to go away?

Clare 33:59
Oh, gosh, like a good six months after and my daughter was born for sure. Like because I felt guilty for her as well. Like I was struggling with nursing and then oh gosh, some other nurse had said to me like you know if you breastfeed like it's really gonna help like her maybe not get diabetes down the road and that kind of thing. And of course, like I believed that straight up so I killed myself to make sure that I could nurse her and so I just yeah I'm the fear as well around her getting it was kind of was pretty strong. But I think as well, you know, that's, I might have never had diabetes and still felt like that like that could have just been postpartum and the middle of the pandemic, so, but I definitely think like, it just makes you stronger as a person as well and more appreciative like one thing I'm very glad about is that I know how vulnerable your health is earlier on in life rather than finding out about something when you're 60 or 70. Like I try to live more purposeful now and I kind of tried to Appreciate what I have rather than kind of worrying about silly things. And so yeah, I don't know. Like, there's good and bad to it.

Scott Benner 35:09
Yeah. Were you breastfed as a baby? No, no. I see.

Clare 35:14
No, I wouldn't have been. But I mean, like, once I kind of realized that, like, Look, if breastfeeding George diseases like, half the population wouldn't be sick, right? Yeah,

Scott Benner 35:25
there's that thing, right? Like, it's everywhere. You know what I mean? Like, you see, like, I don't know, you see something or like, yeah, there's this tea drink every all the famous people in Hollywood drink. It's why they're so thin. I'm like, well, that if that was the answer, you just think we all don't know about that. Exactly, exactly. Not that it's wrong to do. I mean, breastfeeding is wonderful. It's just to your point. It's not it. I mean, there are plenty of people in the world who have diabetes and were breastfed. So

Clare 35:53
exactly. So. But yeah, and then after that kind of six months, I kind of got a little bit more used to but I do get nervous. I have bloodwork coming up now next week. So I always kind of get a little bit anxious about that just beforehand to see like, Is this the time that I'll go back on insulin? But I don't know. Like it is what it is, right? There's definitely worse things to have.

Scott Benner 36:16
Yeah. Have you reconciled yourself with the fact that the big shift hasn't come yet?

Clare 36:23
At moments, yes. And then there's other moments that I panic, and I'm like, I'm not ready, I'm not ready. So I'm like, I tend to kind of overvalue things. So we're going on holidays back to Ireland soon. And I'm like, this has to be the best trip ever. Because this might be my last trip home without insulin, and I kind of turned them into, like, you know, put too much pressure to make them into really big good events, and then I just kind of need to talk it out with my husband, and he's like, look like, you're still gonna have the good holiday on insulin, like, you're still gonna do all the things you want to do. It's just gonna be a learning curve. So yeah, it's just, I mean, I think that's just human nature as well, right? Like, you get a bit panicky about the unknown.

Scott Benner 37:04
It's funny how we ascribe like, I don't know, like it was better here, or, you know, I want to do it this way. Without that, or I mean, that's just an interesting, you're gonna have plenty of holidays, they're gonna be just as wonderful as the one you're about to have. And you'll, and you'll have them and you'll be, you know, you'll be using insulin and have type one. And it'll be the way that you know, other people think of it, you'll be using basil all the time, and injecting for everything you eat, and, and you're still going to have a wonderful vacation.

Clare 37:35
That's it. And I think that's where the podcast helped as well, because my version of diabetes was always just up and down, up and down, up and down. So then when I started listening to people's stories, and seeing that, like, they could live their day to day lives and just stay steady. I was like, oh, it's not actually what I think it is. Right? Like, I didn't actually realize that it was something you could have a totally normal life with. Like, when I was pregnant, I thought, Okay, this is it, I literally just have to try and keep my blood up for the rest of my life. Like, that's what I'm gonna spend my time doing. But I didn't realize like, there was hormones at play. And there was all these other like, skills that you could do like Pre-Bolus and and just reducing your basil if you're exercising and all this kind of stuff, ya

Scott Benner 38:19
know, it's, it sucks. Because because that is at its core right now what diabetes is like, once you get type one, and you're given insulin, and someone doesn't tell you how the insulin works, you're already mismatched, you're unbalanced, right? Like, you're gonna see spikes and crashes and spikes and crashes. And then that only has to happen for a certain certain amount of time before you accept it is your reality. And then if you don't have a physician who will step in and say, no, no, no, it's it's not it doesn't need to be like that. We just have to, we have to move some things around here and make it work better than that's it you often live your life like that. And you can spend that is, I mean, you've watched it over and over again with people who have come on who've had diabetes for decades. It's it's draining it takes it out of you, and eventually you lose your fight. And then

Clare 39:10
that's like what I couldn't imagine because like we were backpackers, like we love traveling to like far flung places. And I at the time as well, everyone was like, you know, you're going to be a mom, like, Oh, this is going to change but that wasn't registered. And in my head, I was like, how am I going to go to like South America and like, carry my insulin and be up and down all the time and not be like I really thought like, Oh my God, my life has changed forever. Yeah. So then it was kind of just when I went on, I think as well like on the internet, like there's a lot of bad stuff and a lot of you know, stuff you should just stay away from like it was so refreshing to just find the podcast and hear people that had strategies like actual strategies to get over the hurdles and there was something you could do about it. You just weren't listening to people. Like complain about how how hard it was like there's ways to fix it. So I think that was really helpful.

Scott Benner 40:04
Yeah, I think in fairness, I take your point, and I agree with you. But in fairness to the internet, everyone's just exchanging their experiences, right? They're just saying, This is what's happening to me right now. And you know, we just talked about it a second ago, the up and down nature and not knowing how insulin works. And that feeling faded completely. Like this is just what's going to happen. That's, that's people getting into that spot, and then going out online and being like, I can't believe this is what my life is. Yeah. And the problem is the next newly diagnosed person that sees that thinks, oh, we'll see. That is what diabetes is. Yeah. And then there's a different group of people who I'm trying hard to influence, which, you know, I want them to say, oh, it turns out if I Pre-Bolus my meal a little better understand how insulin works, or how fat impacts your blood sugar like these things. That doesn't need to be the case. I mean, you're still putting in all the same work, you just have to put it in different places. So you get better outcomes. It's just, it's just the nature of the internet. So you can't be not that you're mad, but you can't be upset that people share their, their wonky experiences, because it's the same platform that allows me to share my experiences.

Clare 41:16
Yeah, it means be helpful. Maybe like when you get the little booklet that you get from the hospital, like the first line is just like go to the Juicebox Podcast. That would probably just help everybody.

Scott Benner 41:28
Theory. Nice to say that if you would just use some of your LepreCon magic and make that happen. Sure, diabetes. Yeah. You don't seem willing to do that. So it's fun. Where what are some places you've hiked that you just were like, Oh, I can't do this anymore.

Clare 41:43
Well, because I would like go low just by walking like, we're where we are in Alberta. We're right beside the Rocky Mountains. So we we would hike up there a lot. Like we are for our honeymoon, we were in the Middle East. And like I remember reading about Syria, we we visited Syria when we were going through there and just like people, like if you have diabetes there, you most people don't have access to insulin, like they don't have access to the care that they need. And I just like that hits you as well. Like, especially when you have a child and you're like, oh my gosh, like I'm so lucky that I live where I live that I have access to you know what I have access to because there's people I get agents like That's disgraceful in this day and age as well, that there are people that don't have access to the care that they need to help them with a disease. It's like all over the world. But for me, I was like, Well, I can't imagine go back to these places on holidays now, but yeah, we'll see. I mean, I've a toddler now. So I can't really imagine going anywhere on a peaceful holiday.

Scott Benner 42:44
It's not gonna happen. Yeah, it's your life's over. I mean, you understand, right?

Clare 42:50
Like, I was like daydreaming I was like, Oh, I'd love to be by a pool in Mexico. And I was like, No, that would actually be horrific.

Scott Benner 42:56
Think of having a baby, as a job that lasts like, I'm gonna say, like, 25 years at its real core. And that you're always thinking like, oh, I can't wait till the weekend comes. But then the weekend never comes. Right. And then one day where I'm at right now, believe it or not, I'm there. This is the weekend for me. My son is graduating from college in three days. And you're probably heartbroken. Oh, it's a whole thing's terrible. First of all, you shouldn't be this old and this shouldn't be happening. And I don't want him to leave and go places and all that stuff. That's not my point. My point is, is that if I'm at the weekend, I got there, right. I had a baby. 22 years ago. I've been waiting for the weekend. The weekends here. It's still not a weekend. It's still not. Yeah, the weekends never coming. Unless you're gonna go get loaded somewhere and check out and ignore your children. This is the game Claire. So that's

Clare 43:49
not gonna Yeah, no, I wouldn't change it for the world, though. Like it is. It's the best thing and even knowing like, if I was to do it all over again and know that I was gonna get diabetes. Like I would do it 100 times over.

Scott Benner 44:01
I agree with you. I would I would as well. I mean, do you think the pregnancy threw you into the Lada?

Clare 44:09
Like, nobody can tell me like, I know that my blood work was normal in previous years. I guess. Like, I mean, you pee on a stick, like 500 times when you're pregnant, right? Like nothing ever came up about high blood sugar. So I really don't I have no idea. Like maybe it was just there in the background. I know your incident requirements go up when you're pregnant. Or maybe the pregnancy just triggered it like I don't

Scott Benner 44:33
know. Sure. It's funny. I mean, we don't think of it that way. Like some some people get gestational and then never develop diabetes afterwards. So yeah, so yeah, I don't know. It's an interesting thing. I'm gonna have to see if I can find out I mean, we talked about all kinds of other things that you know, move your move your immune system towards, you know, doing the wrong thing. I've never heard anybody say pregnancy before, but maybe yeah,

Clare 44:57
I don't I have no idea. I'm interested like I I'm interested to see what will happen my next pregnancy and like what that will look like after as well. But I think you just kinda, we'll just have to figure it out as we go along.

Scott Benner 45:11
Yeah, I see you're gonna do this again.

Clare 45:13
Oh, I'm gonna do it again. Yeah, definitely. So yeah, I don't know, like, I know that the first kind of few weeks of pregnancy or, or the critical part just when the organs and stuff are forming. So I've gotten ginger, I forget her second name, but I've gotten her book about diabetes and pregnancy. So I'm studying that. And I'm trying to prepare myself and we'll just hope for the best.

Scott Benner 45:37
Yeah. And, and Jenny's the co author on that book, I believe.

Clare 45:42
Yeah, yeah. So I know, like, I might actually reach out to them and just see if they've had any similar kind of patients that take might be able to help me along a little bit to navigate it. And but yeah, it's just I suppose it's just totally out of control. Like I don't know if my blood sugars are going to stay as they are early in pregnancy, if they'll go high, if they'll know. But like, my endo was really good on my diabetes educator. They're a phone call away all the time. So that's reassuring.

Scott Benner 46:09
Are you have you had that thought? Like, should we sneak a baby in right now before this thing goes haywire? Or would you prefer that you had kind of full blown type one and you knew how to manage it before you got pregnant? Um,

Clare 46:23
I think we're gonna, so I'm gonna wait till we come back from Ireland because they don't want to be in another country and having to navigate it. And then we're probably going to because I'm 35. So I don't want to wait, like too much longer. And I think I don't really have a choice. Like I'd probably prefer to be on insulin and navigate in it and understand it, but I'd rather like I want another baby. It took us a little while to get pregnant with my daughter now, so I don't I don't know how long it would take. So we're just gonna jump right into it.

Scott Benner 46:55
Oh, does that that's not a euphemism. You mean it? You're getting right to it? Yeah. Wow. Well, good for your husband. I mean, that's nice.

Don't know, I the last time we made a baby. It happened so quickly. I felt ripped

Clare 47:14
off. Like he just sneezed and it happened.

Scott Benner 47:18
I was like, come on. That's not fair.

Clare 47:21
Yeah, right. I've heard a few people say that.

Scott Benner 47:24
This felt like a shakedown to me. I was like, nevermind, even if we just started a number of days later. I might have at least gotten a month out of it. You don't need me. Yeah, yeah. was just too soon. Boom. Pregnant. Great. Perfect. All right. Well, anyway, I'm waiting for that weekend to come back to it's not coming either, Claire.

Clare 47:45
No, no. Here's to tired all the time.

Scott Benner 47:49
Oh, well. That sounds like your response. I understand. I don't feel that way. There's nothing that I could never be too tired. Claire, do you understand what I'm saying?

Clare 48:00
You can never be too.

Scott Benner 48:03
I've tried to explain before. I think it's been a long time since I said this. But if I was in the middle of a mall, and my mom was there, and my wife was like, Do you want to have sex? But we have to do it in front of all these people, including your mom. I'd be like, Yeah, sure. Oh, God. I'm sure I really wouldn't need to worry about that scenario. I'm sure I really wouldn't. But I feel like I could is what I'm trying to say. Nevertheless, it's over now Claire, I'm old and the boys old and the girls old Arden's go into her prom this weekend. And

Clare 48:36
so crazy. It just goes by so fast. Like that's the thing that I can't believe about it like one second, you've got a little baby curling up in your chest, and the next minute, they're, I don't know, like trying to drink out of the toilet bowl or whatever. You're crazy.

Scott Benner 48:52
Well, I can I can share with you that a couple of weeks ago, my son played his last undergrad baseball game for college like he might keep playing after this. But it was his last college baseball game of his you know, his undergraduate as first four years. And the next day I woke up Saturday. He's still at school, and I'm at home. And I'm distraught, like genuinely distraught because he's been playing baseball since he was like three. And now he's 22. And the end the season ended on a day they didn't think it was going to end on SO. His last at bat, for example, I didn't know was going to be his last at bat. And I found myself thinking like all the bizarre things that people think like had I just known I would have. I don't know I would have watched it differently or like I don't even know what I would have done but I felt like I didn't do the right thing because I wasn't aware that it was over. And no

Clare 49:49
it's the pairing felt like you feel like you wish I remember when a like my daughter was little I would wish away the middle of the night. It's like you'd be up for hours you'd be crying And then it's over. And then you're like, oh my gosh, like, I wish I knew that was the last night or like, I wish I could have this back again at the time. You're just trying to get through

Scott Benner 50:09
it to your exact point, Claire, if someone woke me up at two o'clock in the morning tonight and out of a dead sleep, and handed me a six month old Cole or Arden, it would be the best thing that ever happened to me. Yeah, you know, it's crazy. So I'm so I go for a ride the next day to kind of try to clear my head. And on my way home, I passed the field where my son played baseball when he was little when he was six years old. And it's a park and I pulled in. And I kind of sat there from and I got out I went for it was a nice day, I went for a walk around the fields. And I must have lingered, because I'm going back to my car. This gentleman says to me, can I help you? And he was there with his kid getting ready for a baseball game. And I said, No, I just saw my son just played his last baseball game. And I'm just here remembering when he was six. And I pointed to a son as like your, like your son's age. And I said, I'm gonna say something completely just trite to you that I said, it goes so much faster than you think it's going to. Yeah. And he's like, I know people say that. And I said, you don't know. You know, like, I don't I must have sounded. I don't know how I sounded to be perfectly honest. I said, I know. Like, cognitively you think you understand what I'm saying? But you don't. And you're going to be standing here before you know it where I am. So um, you know, I didn't say this. But I in my mind, I was like in hell, I'm gonna be dead. You know, like, like, by the time that kid that guy's kid is playing his last college baseball game. I'm gonna be like 75 And try not to pee before I get to the bathroom. So anyway, the whole thing sucks, Claire. That's what I'm telling.

Clare 51:54
It's so crazy. Like you spend so much of your life just wishing time away. Like you're always wishing for the next best thing. And then like, all of a sudden, you're like, Whoa, wait a second. Yeah,

Scott Benner 52:04
time and reality, don't dive in. Like, you can't make sense of them together. So and you're never going to know until you know, and when you figure it out, it's going to be too late. So

Clare 52:17
that's a one thing like with the kind of silver lining is that I do appreciate life a lot more now in the little things. And just you know how important it is to take care of yourself and like, like, treat yourself well. And don't always be like, wait until you get to the next day. The next best thing or the next big thing, like just take it all in because like it just kind of taught me to like value my health a lot more as well.

Scott Benner 52:42
Yeah, I think that people imagine that there's something better or more complete over the horizon. Yeah. And then every time they get to the top of the hill, they see another hill.

Clare 52:55
You just keep moving the goalposts on yourself.

Scott Benner 52:57
Yeah, yeah, I guess one of the best ways I can explain it is, I feel fortunate that I had to hold Arden's hand so much in the middle of the night to check her blood sugar. Yeah, because I got to see your hand get bigger over time. Yeah. And it's not so

Clare 53:15
lonely. Yeah. To be so proud of me. Now. I love him. Because anytime I hear anything about little kids or anything, I always just get so emotional. He's always laughing. I'm even I'm like the law of like, your heart just expand so much like it's crazy.

Scott Benner 53:28
It's an experience that people don't have. And I only have it because of diabetes. Yeah, that's it. I've held my daughter's hand, probably almost every day of her life. And, and I've noticed it get heavier and her fingers get longer and it changed and look more mature. And it's an experience I have that other people don't get and most of the people listening to this podcast get to have that experience. But I wonder if they appreciate it.

Clare 53:57
Is it scary for you now seeing her go out into the world like with the diabetes as well or, like I can't imagine my daughter going into the big bad world, let alone kind of having something to manage like that all the time.

Scott Benner 54:11
I'm excited. Because I think she can do it. And I'm a little I'm a little confident because I think I can help her if she can't. Yeah, you know, and she's so like, you really don't know Arden but she's so like forward in a good way. Like she's moving forward constantly. And doesn't matter if she's got health problems or if things aren't going well. She doesn't sit back and curl up in a ball very often like she she's moving forward. She's this thing she's excited about. She's excited to go see if she can learn it like she actually picked something to go to college for that. I don't know that she's 100% Certain is going to work out But she's gonna go try. And my only concern at this point is that the things that she doesn't know about diabetes, because they only happen when she's asleep, that I, that there's no good way to explain them to her like, I'm still looking for the way to explain to her that once a month, for reasons that I still can't nail down her blood sugar goes into the 50s. And it won't move. Yeah, and that I have to give her more carbs than normal to get it back up. And that this is a thing that happens at two o'clock in the morning. And she's going to need to do that, and then she'll be tired the next day. And that if she over treats the low, it's going to, it'll ruin the entire next day. And like, like, I don't know, if I should just let her experience it, and then hope that she adjust to it. Or if I should try to explain it to her ahead of time, I think I'm going to try to explain these things. So at least when they happen, maybe she's like, Oh, this is the thing he talked about with the getting low, you know, or something like that. But overall, I'm not nearly as upset as I, as I imagined I was going to be when she was younger, which is again, what we're talking about here like I was, you know, I think there's an episode of the podcast that I titled worry is a waste of imagination. Because when you're worrying about something, unless it's literally standing in front of you, if you're imagining a thing that you think might happen, and very often it they never happen. And you waste now worrying about later. And then when you get to later, there's a real thing to worry about. That's not the thing you imagined. And I think I did that with diabetes a little bit. And I don't know,

Clare 56:41
it's hard not to do that though. Like I think you need like, um, you're saying about Arden as well and like what a go getter. She is like that's credit to you and your wife as well. Right? Because she got that from somewhere, right?

Scott Benner 56:52
I don't know, you think Claire?

Clare 56:55
I don't know why? Well, I hope like, I don't know, maybe it might be better for my daughter not to pick up on some of my habits now that I say that. Like

Scott Benner 57:02
when my when my wife and I had kids, and we talked about we're young, we talk to each other. And we and we used to we'd be like, what are we what are our goals here for Cole, you know, when he was young? And I said, I just don't want him to be an ass. Yeah, you know, and she's like, What do you mean? I said, I said when a group of people stand together and they disperse, I don't want them to look at him and think kids a dick. He wasn't one. Yeah, like like that's, that's I think that's my, my real thought here is that I don't know where he's going to go or what he's going to be or how he's going to turn out. But wherever that goes, and whatever that ends up being. I just hope he does it. Nicely. Yeah, no, I

Clare 57:45
get that for sure. That would be my hope as well. Right now though, with an 18 month old My hope is to stay keep her safe every day because there is no surface on the house that is safe. She's climbing on everything is crumbling everything trying

Scott Benner 57:58
to run her head in the face. Yeah, just you

Clare 58:01
know, I'm one step away from Robin Hood and bubble wrap.

Scott Benner 58:05
You think she hears you and thinks that lady sounds like a leprechaun?

Clare 58:10
She like she's my many like my husband. Like, I'll be saying something about her. And he's like, yeah, like the Apple did not fall far from the tree. Like, this is your attitude all over. So nice.

Scott Benner 58:20
It's nice. Now when she's like, 17 it won't be as nice. You'll be sitting there going like, oh my god, I sometimes I look at my wife and I just laugh. I think to myself, like Does she not see this in herself? Probably not. Right? You know, or, or whatever it ends up being. Listen to I'll tell you my kids are, are generally really decent people. And it's still very hard.

Clare 58:46
I can imagine. Yeah, you just like it's everything is a new phase, right? You think like, oh, like, the pregnancy is hard. And the birth is hard. And then you're like, No, that's actually not the hard part.

Scott Benner 58:57
You know, I don't know if you heard a few weeks ago, Jen came on. It's an after dark episode. She talked about her son Nolan who passed away from an overdose. And oh, I didn't hear that. And all I could think while she was talking is like, well, this lady got it. Like from all sides. Like, you know what I mean? Like, it's not just the I mean, because raising kids is hard enough. But then you add. I mean, the poor kid had, I think he had bipolar disorder. And he was addicted and and you just think like, how are you supposed to manage that? You know? Yeah. How do you get back? Imagine it's something you know, and especially when you everyone starts out the way you are right now. Look at me. I'm like I'm putting in your head. Your kid's gonna do heroin. I'm not I don't mean it like that. But I'll make you cry clarify on the podcast by Mormon.

Clare 59:44
You Howleen on the podcast.

Scott Benner 59:48
So just draw some lines she's about to she's like 18 months old. Oh, my God. But, but but being really seriously, like Jen had a great outlook and her UPS it's terrific. If you haven't heard it. But I just thought like, I mean, how many things can you stack up against the person to this boy? Like how many things are stacked up against him and then her as a parent? And you know, at what point do you just say to yourself, like, I don't know how to get back from this even?

Clare 1:00:15
Yeah, just the strength that she has to come on and speak about it and like, help other people like it's, I don't know, I can't imagine. Like, what that would be like, ever. Yeah.

Scott Benner 1:00:27
After I got done with her. I thought, I'm so grateful people do this. And I don't know why they do it. Like, there's like, No, I, Claire. I don't, it's may now, in 2022. Just for context, I don't think I can. I just booked somebody on the podcast the other day for 10 months from now. Like, that's how far out you have to go if you want to be on the podcast. And then after you record it, it takes six months for your episode to come out. And there's no shortage of people who want to come tell their stories.

Clare 1:01:02
Well, people probably like you probably don't realize the impact that you have had on people and like, it changes people's life, right? Like, if you go from a place that you're really dark, and you're kinda like, you feel like you're always failing, and you don't have that quality of life to just like, you help people so much. And everyone that comes on helps people. And I think like, people just want to pay it for it because it makes such an impact on their life. Right? Yeah,

Scott Benner 1:01:30
it's wonderful. It really is. Because the podcast is it doesn't exist anymore without people. Yeah. You know, like, it's, I mean, how long? If you hear me back in like, the third season, you'll hear me Muse out loud. Like, I don't know how long I can keep this going. And like, I know, you guys like it, and it's helping you. But I mean, how many things could I possibly say? And it just occurred to me along the way, I was like, people stories are like the core of the show.

Clare 1:01:54
Yeah. And they're relatable. And like, you probably don't realize as well, like, it's probably just the smallest little thing that means nothing to you could change somebody else's life. Right? Like, you know, yeah,

Scott Benner 1:02:07
I see that about about it. That's why I think conversational is the way to go. It's why I think not pre planning. It's the way to go. And it's why I don't give the show specific titles. Because if I make yours, Lada during pregnancy, then only pregnant people are gonna listen to it. Yeah. Right. So and look at all the really like maryada things we've spoken about today. And so I don't know what I'll end up calling this episode. You know,

Clare 1:02:35
not like leprechauns, Shrek parenting advice.

Scott Benner 1:02:38
There's nowhere to go. Claire, you're magically delicious. Maybe I'll just say that. Okay. And so, I don't know. But whatever it is, I won't name this show something that will stop someone from hearing the conversation. And yeah, and I think that I think that you have to just like, there's no lie. 20 minutes into this. Like, I've been making the show a long time, right. And 20 minutes into this or so I thought there's not enough here about diabetes to fill an hour.

Clare 1:03:10
Oh, yeah. Right. Like, it's just, I have

Scott Benner 1:03:12
to learn about cleaning. Like, that's what I thought like, I have to learn about Claire now and see where this goes. Because I mean, it's the only way it becomes valuable to people. Because otherwise it's you coming on and going, Hey, I got pregnant and then it turns out I had diabetes crazy. My blood sugar got low a little bit. And now we're waiting for it to, you know, happen all the way up again. Yeah, I'll see you like was that eight minutes? You know, so, I mean, I really think that it's the little moments that you can't title that ended up being the most help to people. And I only know that because I get so many. I get so much like contact from people, they send me like letters and notes and write to me online and things like that. And the things that they told me they loved. I'm always like, Oh, wow, like somebody heard that? You know, like that. 30 seconds in the middle of that episode. They heard that that's, that's really cool. So everyone needs something different. And hopefully, that whatever they need exists inside of these conversations somewhere.

Clare 1:04:15
Well, yeah, that's the whole point. And like, for me, I find as well it's just like finding someone that is, you know, relatable that has the same, like, we're all just going around living our lives. Like it's just, it's nice to know you're not on your own I think sometimes as well.

Scott Benner 1:04:30
Yeah, no, I agree with that. It's not feeling alone. It's a big part of this. And you're in a scenario where the people who are actually around you, I mean, the likelihood that your neighbors gonna have type one as well or I mean, jeez, where are you gonna find another person with a lotta you know,

Clare 1:04:47
yeah, anybody out there?

Scott Benner 1:04:50
Nobody's coming to Canada.

Clare 1:04:53
I would love to know somebody that was in the same situation as me and then got like pregnant again like for me that's I would love to find somebody that had that story just to, to hear, like how they navigated that, but I mean, it's like finding a needle in a haystack. Right?

Scott Benner 1:05:08
Well, you've come to the right place, because yesterday show is with Susan. And Susan is now very good friends with another person who's been on the podcast previously. And they found each other through the podcast. Oh, cool. So maybe you'll get one. It will find you a lot of pregnancy. That that reaches out and says a little bit. You're not? Are you on social media?

Clare 1:05:29
I am. Yeah, I am.

Scott Benner 1:05:31
Are you going to my group?

Clare 1:05:33
I'm in your group. How come my name is spelt in Irish. So my surname is different.

Scott Benner 1:05:40
That's how you tricked me? Because I tried to look earlier to see if you were very pale and short. And

Clare 1:05:48
I think I'm covered in fake Tom and my profile picture.

Scott Benner 1:05:52
You're covered in white, fake tan tan. Yeah. I have to be honest with you. I did not hear fake tan the first time.

Clare 1:06:01
Oh, Jesus, like do I want to know what you I don't even know what you said. I was like,

Scott Benner 1:06:05
What did she say? And then all of a sudden, I think I thought, I think she said fake tan. I said, Where did I get that from? Oh, my gosh. Well gets good. So when we post your episode, you know, six months from now, you if you want to jump in to that into that thread and say, hey, look, that's me. I'm looking for people. If you're here, maybe you'll find somebody. I listen, there's a story in that Facebook page recently, of a person walking out of a Costco wearing a Juicebox Podcast sweatshirt. And someone looked them in the face and said, I listen to that podcast too. How crazy is that? Yeah,

Clare 1:06:41
it's cool. Like I feel like, even because I ran into somebody the other day, and they were wearing like a Libra and I was like, Oh, I've got my Dexcom on and it's like you just kind of boom. It's a great conversation starter.

Scott Benner 1:06:52
Yeah. No, it's It's the only way you can find people sometimes. So like, like, don't get me wrong if you know if if a guy walking out of a Costco was wearing a Joe Rogan t shirt and somebody else said I listen to Joe Rogan. I'd go Yeah, well, like sort of, like 15 million other people like that makes sense. But just two people who listened to a podcast about diabetes, randomly walking past each other. It made me think it made me think one time my wife asked me, she goes, Do you ever sit in crowded places? And think, I wonder if someone in here would recognize my voice? And I have thought that before? Like I

Clare 1:07:30
were very distinctive voice as well. Like, I feel like Yeah,

Scott Benner 1:07:34
but you only need like, like, even like bigger picture. Like it just is there a person like I make this thing in a room? And I put it on the internet? Is there a person here who's heard it? Like, you know what I mean, and it's happened, like I've been approached in airports and, and places like that before. But it's an odd feeling to look around and think I might be doing something that's valuable for someone in here.

Clare 1:07:56
Might like you are doing like all over the world. Like that must be a strange feeling to think that like you start in the literal room and like now you're helping people the other side of the world that you've never met, right?

Scott Benner 1:08:09
It is an odd feeling. Yeah, I would not be able to tell you otherwise. It's it's I was I was writing with Well, I've become friends with Charlotte Drury, who was on the show recently, and we've been texting. And yeah, and now many, many teenage girls who hear this are like, that's not fair. I want to be I want to be friends with Charlotte. But you can't be I am. So that's it. But we were we were talking back and forth. And she found some stuff I was doing online. She was telling me what she thought of it. And I told her like I said, my overarching goal is to just change the way like people think about diabetes, like Yeah, like people, and then maybe to one day have an impact on how doctors talk to people about diabetes. Like that's how I think of the show like that. If I have like a, like a master plan, it's that. I don't know if I'll ever bring it to fruition or not. But then day to day, I just want to help people. And I think if I can keep helping people day to day, that maybe that bigger goal could maybe come true on day. So

Clare 1:09:15
yeah, it's like the little steps. Hey, to get to the bigger the bigger picture. Well, yeah, you're doing like, I mean, you've helped me and then I've given the Juicebox Podcast name to anybody that I hear of. So I think that's lovely as well that everybody just spreads the word and it doesn't really matter, like how you feel or what support you need. It's just that like, everybody seems to genuinely want to help everybody else. There's no stupid questions. There's no stupid feelings. Like it's everyone just seems to be really supportive, which is, you know, that's the way the world should be right? Yeah.

Scott Benner 1:09:48
No, I'm insanely proud of how that Facebook page works as an example, like, it turns out that if you all like when people listen to the podcast, they get a similar feeling about diabetes than when they Come together. There, there's less of that kind of bad advice you can see online sometimes, you know, and people know when they don't know when they lay back, which is also really helpful. Anyway, listen, Claire, you're right. I'm terrific. I hear what you're trying to say. Thank you. I appreciate you. You're welcome me to go downstairs now to the people who I'm related to who do not think I'm terrific in any way, shape, or form. And one day, that little bundle of joy you raise will probably not care about you. I know.

Clare 1:10:33
Oh, my gosh, like, Yeah, I can't imagine what that's like. All like the the thing that was like, I'm like, bouncing around. And I felt like Peppa songs in my head constantly.

Scott Benner 1:10:44
Okay. Oh, Arden had a Peppa Pig birthday once. But I think it was ironic, cuz she was older.

Clare 1:10:51
She was older. And my daughter is obsessed with Peppa Pig. Like, I don't know why she chose pep out of everyone she could choose. But it's Peppa.

Scott Benner 1:10:58
That's amazing. All right. I want to thank you very much for doing this. I want to ask you if there's anything we didn't talk about that we should have?

Clare 1:11:05
No, I don't think so. Thank you for letting me do it.

Scott Benner 1:11:08
Are you kidding me? This is amazing. I didn't know you were gonna have this accent you made my whole day. For clarity, I believe the episode is going to be called HBA one. See? All right. Okay. One more time just for everybody.

Clare 1:11:27
Hey, HBA onesie. Yeah,

Scott Benner 1:11:29
that's what I'm gonna do it.

Clare 1:11:30
Like I have to hear like myself say it and I record it because I don't know how I'm

Scott Benner 1:11:36
saying, Oh, well, that's the best part of asking you to say it over and over again. Because I think your brain hears HB a one say,

Clare 1:11:43
well, that's like I don't say three. I say tree. Like I think it's just an Irish thing. We've pronounced things differently.

Scott Benner 1:11:49
You said thanks. Oddly, a second ago. Yeah, yeah. Oh, yeah.

Clare 1:11:53
There's a lot of like, when I moved to Canada First, I would be saying where it's people would not know what I was talking about. So yeah, it's funny when you hear hear from people the other side of the ocean, right?

Scott Benner 1:12:07
Hey, real quick. You have a different perspective. Because you lived in Ireland, right? Yeah. Okay. The icy hellscape that I described when I talked about Canada and when I anywhere near being right.

Clare 1:12:21
I think it's colder in Ireland when it's like minus one or two than it is in Canada when it's minus 15 in Alberta, because Alberta is really dry. And Ireland's really humid and wet and the cold goes through you. But yeah, when it's like minus 30 It's not. It's horrible.

Scott Benner 1:12:43
And have you ever seen a beaver just walking down the street or anything like that?

Clare 1:12:46
I know. But there's like deer will cross the road and we get like bobcats and stuff in our gardens. Okay,

Scott Benner 1:12:53
well, then I'm right. Okay. Good enough. I'm right. Let's just say I'm right that, okay. Deer and bobcat. It's minus 30 degrees. Frozen. hellscape. Okay, I've got it. Well, I'll

Clare 1:13:05
tell you a story. Like my dad laughed so hard because in Ireland, there's like lots of farms and there's cows and the sheep and everything. So we were hiking out here one day, and we thought we seen a bear. And we were kind of like, okay, like, it's a bear. Like, this isn't ideal. But we've got our bear spray. We kind of know what to do. It wasn't a bear. It was a gang of cows in the middle of the fart like the forest in the mountains. We had not got a clue what to do. Like we were kind of shimmy and pass them afraid they would attack us. So my dad like laughed so hard when he heard that because I grew up around cows, we mountain cows, just like regular cows. I don't know what they were doing in the middle of like the night.

Scott Benner 1:13:45
Come on cattle and get it together. It was really strange. But yeah, get your cows where they belong. There was someone on recently from Ireland who talked about those long haired cows that lived in the woods near her house. Oh gosh, I don't know what they are. I forget now. She's been on twice. And I love her and I can't think of her name off the top of my head. I'm so disappointed. Actually, you know what? She was on episode 10 originally 10. Oh, yeah, I'm gonna look at her names. It's called Teddy's mom. She's an and I don't think I made the next episode. Easy to find. I don't know if that makes you. If that comes as a surprise to you or not anybody listen, I don't know which one but she was just on in the last couple of months again to revisit because it was really interesting to have her back on. Like she was on the 10th episode of the podcast. Like I made a podcast in 2015. And this woman reached out and she's like, I'd like to be on your podcast and back then try to imagine I was like, I barely have a podcast but okay. And then, eight years later, she was back on the show. Yeah.

Clare 1:15:00
That's so crazy. I'm gonna find that episode and listen to it.

Scott Benner 1:15:03
Alright, anyway, long haired cows. That's what I heard when she was talking. Maybe I'm wrong. I don't drink during the podcast. So I trust my memory on this. So all right, Claire, this was wonderful. Thank you hold on one second. Okay. Sure.

Well, I want to thank Claire. First of all, she was absolutely just delightful. I also want to thank touched by type one and remind you to find them on Facebook, Instagram, and at touched by type one.org. They really are a absolutely amazing organization. And I do want you to go check them out. Of course, athletic greens, right, they make a G one. It's a green drink that tastes good. That's got all the vitamins and goodness in it that you need athletic greens.com forward slash juice box, I use it every day, I actually think you'll like it. And that's why they're a sponsor. So go check them out. Athletic greens.com forward slash juice box.

Hey, I'm doing a survey about the podcast. It's pretty cool. And it just sort of tracks what people think of the show as far as their diabetes and health. Basically, you know, is the show helping you or your doctor is helping you more you know, where you're getting your your best support from? It's a great little survey, we put it together ourselves that already has over 500 responses. And I have not spoken about it yet on the podcast. I've so far just made it available through the private Facebook group. But now I would like to tell the people listening to the podcast to see if you're interested in going and filling out the survey. It's just telling me about the different series, what'd you think of them, your rating, your doctors, the podcast, other diabetes help, this information goes nowhere. It's completely anonymous. If you want it to be, you don't have to put your information in to connect you to it. But that's it. I'm just doing a survey to see how the podcast is going. If the data proves out, we might share it with some doctors offices, show them how the podcast helps people so that maybe they'll take a look at it. And probably use some of the data on social media posts and things like that. We're just trying to let more people know about the Juicebox Podcast and your answers to these questions will help me do that. So now here's the thing, the links a little a little funky. It's yeah, I'm gonna put it in the show notes for you because it's like s dot survey planet.com forward slash WGJV f x dx and all the gear to remember that. So I'll just put the link right in the player for you here. I hope you guys check it out. It would be really cool if you could take the time. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.