Scott Benner 12/30/24 Scott Benner 12/30/24

#1394 What does Roxanne have?

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Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox Podcast. Welcome.

This is Roxanne, who was originally on episode 790 called Roxanne. That title said Roxanne has type one diabetes, psoriatic arthritis, cholesterol, BP, heart issues and more. Today's episode says this, Roxanne has had diabetes for 25 years, a returning guest from episode 790 she's here to talk about the radian study, and that she thinks she might not have type one diabetes, but has type two that led her to using GLP medications, and this has done so much for her. Levered out, her iron levels slightly decreased, her arthritis. She's lost 100 pounds. There's a lot going on here. Lung collapse, GLP does she doesn't. She have type one diabetes. So much happening in this episode of The Juicebox Podcast. If you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bowl beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to Juicebox podcast.com and click on bold beginnings in the menu. This episode of The Juicebox Podcast is sponsored by us Med, us, med.com/juice, box, or call 888-721-1514, get your supplies the same way we do from us. Med, today's podcast is sponsored by the insulin pump that my daughter has been wearing since she was four years old. Omnipod. Omnipod.com/juice, box. You too can have the same insulin pump that my daughter has been wearing every day for 16 years.

Roxanne 2:07
On Roxanne, I've actually been on the podcast before.

Scott Benner 2:11
Yes, you have Roxanne. Your name is one that I actually recall, like it popped up in front of me, and I thought, I know this person. I've recorded with this person before. I was so proud of myself when I knew tell people what episode you were on. It was,

Roxanne 2:26
I want to say it was 790 okay, what

Scott Benner 2:28
was it called? Do you remember? I think it was just called Roxanne, and you have type one diabetes?

Roxanne 2:36
I thought that's what I had, but apparently now they're thinking I have type two instead?

Scott Benner 2:41
Really? Yes, oh, hold on a second. Roxanne has type one diabetes, psoriatic arthritis, cholesterol, BP, heart issues and more that. Boy can't, can't beat that as an opening and that was episode 790 but you're saying now they don't think it's type one. Yeah, go on.

Roxanne 3:05
Well, I was in, I did the radio study, and I don't have any markers for type one. Okay.

Scott Benner 3:11
I mean, is that? I don't really know, like, can you not have type one without any markers? Or that's what

Roxanne 3:18
I'm not sure. But talking to my endocrinologist, she says, I'm probably more type two, but because I was 18 when I was diagnosed,

Scott Benner 3:26
they may have they just didn't look any farther. I mean, that seems so backwards from what you normally hear, but yeah, fair enough. What do you think?

Roxanne 3:39
I figured it could be both. Both my parents had type two, or have my dad has it, my mom had it. So it's, I don't I've always had insulin resistance, issues with my PCOS and everything. So I'm like, I don't really care. It's treated the same way. So that's like, the label doesn't exactly matter to me.

Scott Benner 3:58
Okay, you did this study. Do you remember what they like? It's the rare and atypical diabetes study. Is that right? Or something like that? Yep.

Roxanne 4:07
Okay, yeah, they did lots of blood work and had me come down and do a glucose tolerance test.

Scott Benner 4:12
How old are you now?

Roxanne 4:14
I am 44

Scott Benner 4:17
so you've had diabetes, 2425 years, somewhere in there. Okay, what made you go get the study done?

Roxanne 4:24
I heard about it on the one of the podcast episodes, and I was just curious to see if I would qualify for something like that and just what it was about. So I looked into it interesting, and they had one here in town, so I didn't have to go too far.

Scott Benner 4:38
Wow. How long ago did this happen for you? That was fingers in, 2320 23 about a year or so ago. Okay, so nothing changed about your about your management.

Roxanne 4:49
The only difference was I had started the Manjaro by that

Scott Benner 4:54
point. Oh, how did that impact? Is that why you're back on Yes, yeah. Okay, well, huh? Geez, I didn't expect that. How did it make you feel when, when you got this news?

Roxanne 5:09
I was like, Okay. I was like, because I've always gone back and forth and said it could be one and a half because they were never sure what to call it. So like, Okay, I really don't care which one it is. It's like, going, we're still, I'm still using the same things to treat it as I was before.

Scott Benner 5:24
I mean, listen, obviously I'm not a doctor or anything, but I thought it was possible to have type one without the autoimmune markers.

Roxanne 5:32
I think so, but I don't know how they would know for sure one way or the other. That's what I was because I looked up stuff after I saw that I had no antibodies, and I'm like, Okay, well, is it possible, so I'm

Scott Benner 5:46
not really sure. Is there no one to go back to like at the study and say, can I get more information about this or like, because you're stuck then going to your Endo, who may or may not have experience, right? Yeah,

Roxanne 5:58
I was like, I may reach out to them again and see because I know they wanted to talk to my like my immediate family members, and do testing interesting on them, but none of them have really been. They were like, I want to do that.

Scott Benner 6:13
No, thank you. I got diabetes. I don't care which one it is, or I don't want to know I'm getting it or something. Is that basically the response you got back. Yeah, it's hard to not understand their perspective, that's for sure. Yeah, listen. Roxanne, I just want to jump in here, just so people know that, like, your microphone is going to sound a little different to them. Your can I tell them how you're set up? Yeah, that's fine. Okay, so you're wearing hearing aids that are directly connected to your phone, and that's how we've got this connection. So if, yeah, if we have like, a little crackle or something at the end, like, that's what's going on, no big deal. I mean, let's give them an overview for a second. Though, you lived a long time taking I mean, I'm assuming you've done shots. You probably won a pump all that. Oh yeah. And your management, in your mind, is basal insulin coming from a pump. You're bolusing for all your meals. It's not like you're using a I mean, what was your average total daily insulin before the Manjaro I

Roxanne 7:09
could use 200 units in like two days. Okay,

Scott Benner 7:13
so you're using a fair amount of insulin, but you said also PCOS, yes. Okay, obviously, probably since you were young, it's been on you. Oh, yeah, yeah, insulin needs always on that side.

Roxanne 7:28
At one time I was on you, 500 insulin. Oh, okay, geez. That was before the gastric sleeve gotcha,

Scott Benner 7:35
and then where there was weight loss that that helped with that.

Roxanne 7:40
Yeah, I was 214 at surgery, got down to 170 and that's where it kind of got stuck at. Was 170 which is why we looked into the Mon Garo. Okay, so

Scott Benner 7:51
you lost 44 pounds after when was the surgery? It was 2016 2016 you have the surgery. The 44 pounds comes off. And how about how long

Roxanne 7:59
I actually like it may have gotten down a little bit lower than that, but eventually it creeped back up to 170 I think I got down to 150 Oh, was my lowest weight.

Scott Benner 8:10
Okay, so then you live 2016 etc. When does someone come on and talk to you about a GLP, my daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you, omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bath tub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once omnipod.com/juicebox, get a pump that you'll be happy with forever. I don't know how you guys order your diabetes supplies, like CGM pumps and testing equipment, but at our house, we use us Med, and I'm gonna walk you through the entire process right now. I'm looking at the email from us Med, it says it's time to refill your prescription, dear Arden, please click the button below to place your next order. Then you click the button that was it. Two days later, I got this email, thank you for your order from us. Med, we wanted to let you know that your order and it gives you an order number was shipped via UPS grind. Confirmed you can track your package at any time using the link below. And then there was a link, and then it showed up at our house. Now I'm going to walk you through the entire chain of events. On the 29th which was the Saturday I clicked on the email. On that Monday, the first I got an email that said the order had been sent four days later on the fifth the package arrived. If you can do it easier than that, you go get it. But if you can't, us, med.com/juice, box, or call 888-721-1514, get started today with us. Med, get your diabetes supplies the same way we do

Roxanne 10:41
that was my actually, it was my surgeon from the when I followed up with him one year because I found I was going back to see him to get blood work. And every once a year, and he mentioned the ozempic. How long ago was this? That was 2022,

Scott Benner 11:00
all right, so a couple years ago, he says, Hey, have you heard about this GLP medication? Yeah. And you said, What'd you tell him?

Roxanne 11:08
I said I hadn't, but he told me to ask my endocrinologist about it. So

Scott Benner 11:12
I did. They gave it to you, no problem. Yeah. She was like, okay, we

Roxanne 11:17
can try that. All right, but she decided to do monjaro instead? Because it might, she said, it would have a better outcome.

Scott Benner 11:24
You might lose more weight on it. Is that what? She said, okay, yeah, so you start shooting that in 2022 where's your weight and what's your daily insulin like? Then when you be right before you started, and what is it now? Okay,

Roxanne 11:37
it was February of 2023. Is when I started it, because it took me a little while to decide to ask her,

Scott Benner 11:45
because I wasn't sure. Okay, I

Roxanne 11:46
wanted to go that route, but in February,

Scott Benner 11:48
hold on, Roxanne, let's stop there. What? What slowed you down? Where were you unsure?

Roxanne 11:53
I just wasn't sure about it yet. I was like, so I did some research, and then I was like, okay, because I think it was the end of 2022 when the

surgeon suggested it. So it took me a couple of months to kind of figure out

what I wanted to do with it.

Scott Benner 12:11
Wanted to go slow and make sure you understood what what you thought it was before you just jumped in. I say, okay, okay, so you go to the doctor. Doctor says, Cool, that day before you start total daily insulin and your weight.

Roxanne 12:24
I was 170 and then I was probably 60 to 70 units a day, okay?

Scott Benner 12:31
And you start with, I mean, what do they start you on? Point two, five of my point two,

Roxanne 12:37
five, okay, and then I moved up to the five, and I haven't gone farther than the five.

Scott Benner 12:42
Oh, okay, so you started at point two five. Did you do that for a month or longer? And it was a month, all right? And did you have any impacts in the first 30 days? It was a little bit of

Roxanne 12:54
nausea, but not much. It actually wasn't that. I didn't have that bad of a of side effects. So what

Scott Benner 13:00
about on your blood sugar or your insulin needs?

Roxanne 13:04
Oh, there was a definite decrease right away,

Scott Benner 13:07
okay, enough that you had to make adjustments to your settings. Uh huh. Okay. Did you lose any weight the first month?

Roxanne 13:15
How much? I do not remember. It's been a while. That's okay.

Scott Benner 13:19
And then you move up to the point five. Is there another decrease in your need for insulin? Yep,

Roxanne 13:26
it decreased again. And then it's just kind of been going and then the weight was slowly going down. By it was October of 23 I was down to 120 pounds. Holy

Scott Benner 13:40
Hannah. Wow, you lost 50 pounds. Yeah, geez, good for you. Congratulations. And then

Roxanne 13:47
I've been able to maintain that for the most part. This last year or so has been very crazy, health wise. How so summer of 23 in my ferritin was four, and so I ended up with an iron infusion, and that fixed that part. In March of 24 I got pneumonia, which then led to my lung collapsing. Oh, my God. And then two weeks later, it collapsed again. What

Scott Benner 14:16
the hell yeah? Like a bounce house that won't stay up,

Roxanne 14:19
yeah? So they ended up going in and having doing surgery to adhere the left lung to the wall of rib cage. Is

Scott Benner 14:27
that what they do to keep it from collapsing? Uh huh. Wow. And the weird thing

Roxanne 14:31
is, my mom had her lung collapse at the same age,

Scott Benner 14:35
huh? Well, way to keep up trends,

Roxanne 14:37
good job. Yeah. I'm like, we were thinking about we're like, Wait, mom is about this age. I was like, and hers was kind of spontaneous. So the pulmonologist is doing a genetic test to see if it's a genetic a rare genetic disease. So I won't have results for that for

Scott Benner 14:54
a while. Well, what kind of surgery is that? How invasive is it?

Roxanne 14:58
They put two whole. Holes in the side of my ribs and go in with cameras. What

Scott Benner 15:04
was the recovery like?

Roxanne 15:06
It's like I would have gone back to work in a week, in less than a week, but they

made me stay home, okay, or at least a week.

So I think it was a week and a half. But

Scott Benner 15:16
you felt better in a week? I felt better. Yeah, all right. Well, that's good news. Let's go back for a second to you losing like you're 120 pounds now,

Roxanne 15:25
I am actually at 115 because I was down to 105 when I left the hospital. Roxanne, how

Scott Benner 15:31
tall are you? 5253? Is this a good weight for you? I'd

Roxanne 15:36
like to be back up to 120 as of this morning, I was 115 so that's been good. So it's going back up.

Scott Benner 15:44
Are you having trouble eating? No, no, so you're eating okay, but you lost weight. Why do you think you lost weight?

Roxanne 15:50
I think it was just the stress of the all the medical issues at that point.

Scott Benner 15:56
Yeah, okay. Did your iron ever go back down? No, it stayed

Roxanne 16:01
back up. It stayed up pretty much. I follow up with a hematologist every

Scott Benner 16:06
six months. Had your iron ever been low prior in your life? Not that I know of. Okay, I'm doing some comparison shopping here. And of course, if you listen, you know that my iron had been low for like ever, and then it stopped getting low when I started taking zepbound Now, which is Montana, so it changes the absorption. Or for me, it, you know, I'm sure it doesn't do it for everybody, but I was clearly not absorbing something, and now I am from my food, so it's awesome. Do you feel like I your health issues, aside the pneumonia and etc, do you feel different? Like, what's it like to have lost that weight?

Roxanne 16:43
It's interesting because I don't, I can't seem to see myself as being that small anymore, as I still think of myself as being bigger. Oh, do

Scott Benner 16:53
you want to talk about that? Roxanne, I have that sometimes. Oh, my God. So one time I came out to my wife and I said, I walked out in the room, and I was like, I said, Does this ever happen to you? Sometimes I turn the corner when I go into the powder room and I'm like, you're met with a mirror before you get into the room, and it doesn't look like me. Yeah, that happens to you? Uh huh, yeah, all

Roxanne 17:15
the time. Because there's all these things I can see that I've never been able to see before, like, what all the different bones, like, the bones, like, I can see things and my veins are very, very noticeable now, yeah,

Scott Benner 17:29
I sleep on my side often. And I'll, kind of, if I sleep on my left side, I will sometimes, with my right arm, reach under and, like, kind of tuck my fingers under my chest, like on the right, on the left side. And every time I do it, I think, what is that? And I have the same thing in the shower when I wash my chest and I go down, I like, there's this moment where my, like, you feel something, and my my brain's like, what is that? And it's my rib. Yeah, it throws me every time I touch it like it's getting it's happening. I don't want to make it seem like I can't learn it's happening less and less but, but, you know, just wash your chest, roll down. God, what's that? Oh, that's my rib. And then keep going. It's the weirdest thing. Yeah, it's

Roxanne 18:15
very weird to I'm just like, Oh, I was like, that's what that looks like, I've never been able to see collar bones before. Yeah.

Scott Benner 18:23
Is that what this is? Gosh, at five two, you said,

Roxanne 18:27
like, somewhere between five two and five three,

Scott Benner 18:31
you went from 220 to now 115 Uh huh. My God, that feels like a miracle, doesn't it? Yeah. Do you ever have that feeling of like, oh, I should I wish I would have done this before the bariatric surgery.

Roxanne 18:44
I don't know I was like, because the bariatric surgery was so great to begin with, that helped kick things off and at least, but yeah, I kind of wonder. I was like, what would have happened had we tried something like that first? It's

Scott Benner 18:56
amazing. Has it had any impacts on other health issues,

Roxanne 19:02
I think so my TSH has gone down. It's like point six.

Scott Benner 19:08
Do you think that's the weight and, yeah, I

Roxanne 19:11
think that's just from the weight loss. Okay? Because they've had to adjust my Synthroid levels a little bit. Yeah,

Scott Benner 19:17
we've been watching that for Arden. Actually, she's going to get a blood test pretty soon for that, because she lost weight with GLP as well. She's almost in the same boat as you are, like, she got it back now. But there was a moment where she, we were, like, it's a little too much loss, and she was able to, you know, she put some back on, no problem. But what about the arthritis I'm I'm, like, so interested to know if it helped that

Roxanne 19:40
a little bit, I still just have a low level of pain. I think also some of it's just been cool, started back up with work and everything. So I've been doing more movement than I had been this summer because they made me take the entire summer off. They wouldn't let me work this summer

Scott Benner 19:58
because of the lungs. Uh huh, yeah,

Roxanne 20:01
which was a good thing,

Scott Benner 20:02
yeah. Can you tell people what kind of work you do? I

Roxanne 20:05
am a teacher of the visually impaired. Okay,

Scott Benner 20:07
well, well, well, Roxanne, we are into a thing here. Okay, like I wanted to. I'm trying to decide which way to go. Do you have anything you want to talk about before I start picking through this summer,

Roxanne 20:16
I actually went off of insulin completely. I had no injected insulin from just until last week. Last week I put my pump back on because the stress of work was making my excursions after meals go up higher than I wanted to. Wait,

Scott Benner 20:32
wait, wait. So you started taking Manjaro, you lost a bunch of weight, and then you intersected a moment where you're like, I don't need insulin.

Roxanne 20:41
Yeah, my endo wanted to try, at my appointment in June, my endo wanted to try not doing any insulin, any injection insulin, because I was only using like, 12 units of basal a day. So just basal or 12 units total a day, okay, so I wasn't using much. Most of my basal was turned off the I switched from op from Omnipod five to the Moby in March, and so looks like both opera movements worked about the same, but I like the control IQ a little bit better, okay, but it's most of the time, like at night. I don't get any basal with the pump program, because and my blood sugar stays about 86

Scott Benner 21:24
so you're wearing an algorithm. You're wearing the Moby this pump. It's deciding you don't need anything overnight, or you're telling it, I don't have a basal rate overnight. Or

Roxanne 21:35
it was deciding it. But then in June, my indo switched some settings around and made the basal at night zero. Most of the time it wasn't giving me anything, so she just went ahead and made it zero. Okay, and that's to do something at will,

Scott Benner 21:51
yeah, but in the beginning, you were still bolusing at meals, and now you're not doing that, until recently again, yeah, until last week. How long was that gap where you weren't publishing for the meals? It was

Roxanne 22:03
the 15th of

Scott Benner 22:05
June through last week to September. June, July, August, September. Like four months,

Roxanne 22:13
yeah, up to maybe two and a half. About

Scott Benner 22:16
two and a half months, okay, what did your doctor have to say about that?

Roxanne 22:19
I know that's a good question, because I haven't talked to her since I did it okay. I was like, and she gets the reports and everything. I go see her in November,

Scott Benner 22:28
and that's on a point five Manjaro once a week. Geez, yeah, you might disappear, and if you used any more of it, do you ever have the feeling like, point five is too much? Or you think it's pretty good?

Roxanne 22:44
I think it's good. But that was one thing we were going to talk about, was looking at maybe adjusting how often I shoot, I take it like to to like, lengthen the time, but between things or move the dose one or the two, is what some of the things he was going to look at when, when I come back,

Scott Benner 23:02
yeah, so you think you might elongate it, not take it every seven days. Yep, that's

Roxanne 23:08
what she was saying, to maybe take it every 10 or every other week. Here's

Scott Benner 23:13
the way I've been, because that's the thing that gets brought up. I mean, everyone's limited by the pen, you know, the dose, basically, right? So when doctors get to the point where they're like, Ah, it's probably too much for you, then they'll talk about, like, maybe we could stretch it out 10 days, something like that. But I've taken the medication and it wanes at the end, right? So it's not full power seven days. It's no, today's my sixth day, and I got up this morning and I thought, Oh, I'm hungry, but I wouldn't have thought that three days ago, like three days ago, I would have woken up and not been hungry. I would have eaten, but I wouldn't have been hungry. And not that I'm saying it's bad to be hungry. I'm just saying that like you can tell it's not working as much. And if I got it in my head today to have like, burger and fries or something, I could probably get it. I could eat it without a problem, but I couldn't do that on like the second day or the third day. And my point about that is, is that if the if the half life of the drug, if it's not actually covering all seven days like that, and you're having other implications from it, like meaning if, if you are being helped with your arthritis because of anti inflammatory reasons, or if it's making an impact on something else, right, like your PCOS, for example. Are you seeing any benefit from that?

Roxanne 24:30
A little bit? Yeah. I was like, the decrease in the insulin resistance has been helpful.

Scott Benner 24:37
Yeah? Then the question is, is, do you really want there to be a gap. And do you Yeah, right. And do you start talking? Yeah, right. So you had that thought when she said, maybe we can go longer, you were like, maybe we shouldn't, right? Yeah, because I

Roxanne 24:51
got the same thing. But it's like, I usually take it on Wednesdays, so by Tuesday I'm actually hungry on Tuesdays. Yeah? Or the rest of the time I'm not hungry.

Scott Benner 25:01
Do you see your insulin needs rise at the end of the week? Sometimes

Roxanne 25:04
I've noticed that has been the days where it goes up a little bit, goes up and stays up a little longer than I would like it to.

Scott Benner 25:13
Do you ever notice? Has it ever fallen? But this is a lot of paying attention. But have you ever gotten your peer I'm so sorry to ask about your period. Have you ever got, have you ever the dumb job I have? Have you ever gotten your period and been like at the back end and thought, Oh, my cramps are worse, or the bleeding is worse, or anything like that?

Roxanne 25:32
Not usually okay, because mine's rare. Mine's gone back to being sporadic again, so I'm not sure if it's perimenopause. Doing that piece again, because it was coming regularly for a while. Okay, until the summer, and then it started every two months again.

Scott Benner 25:50
How old are you?

Roxanne 25:51
44

Scott Benner 25:53
got this perimenopause. Word won't leave me alone. My wife's 50. Jesus. I hear it everywhere. I'm so hot, perimenopause, I'm sweaty. Perimenopause, I'm cold, perimenopause. I'm like, I Okay. I saw it like, I'm so sorry. Sounds horrible. Okay, so I haven't had anybody on yet to talk about this, and we're still just figuring it out for Arden. So I have no I don't know that I have any valuable input on this, but, you know, I've talked about this a little bit on the podcast, but it's probably not out yet. So funny how the time shift works. I heard somebody say something today, like somebody online said, I know this is this, right? And I was like, Oh God, I recorded that six months ago. That has nothing to do with that, but I see that you're drawing a connection to it, because it's like, it feels like I probably just said that three days ago, but I said it like months before it's anyway, it's interesting. Manjaro for Arden, you know, we're moving her up, moving her up, like, trying to get it to the right place. It's perfect on her blood sugar. Like, if, if her blood sugar was the only consideration. She was using five milligrams of Manjaro, and it was beautiful. And I just mean, blood sugar wise, blood sugar is perfect. Like, just couldn't get an excursion, like, you almost didn't have the Pre Bolus of, you know, blah, blah, blah. Like, there's no lows later, because you're barely using, you know, you're barely using any insulin, right? Just super smooth. But she's like, Yo, I can't eat. We're like, wait. She's like, I am just never hungry. She's like, I'm eating, but like, I'm never hungry. So we're like, Okay, well, we don't want that. Obviously, she was away at school, and she was losing, you know, she was losing weight, and, you know, you kind of don't see her the same way, like you're looking at it through face time or whatever. But then she started being like that, my pants don't fit. Like, you know, like, we're like, oh, okay, hold on a second. Like, she didn't have a scale with her, you know. Like, so we're like, All right, so like, Let's get you home. Got her home. Said this on the podcast already, she was about six, seven pounds under where she should have been. And, you know, we spent a little bit of the summer, just saying, like, all right, well, like, let's just, you know, eat on purpose. Like, that stuff, because I've, you know, used it for that, and it's what you have to do some days. You got to just tell yourself to eat, you know. But it just wasn't working. So I'm like, All right, well, we want to get your weight back up, so just stop taking it. This week, she stopped taking it, and she's like, my god, Roxanne, like, on day two, she's like, do you anybody want to go out to lunch? We were like, well, she was so hungry, you know, and she had her appetite, so she's super excited, and she's eating stuff, and she gained weight. And we're like, All right, well, now you're, we've got your weight back up, but your blood sugar's, you know, we've been managing it now with, again, a lot more insulin to make up for the fact that the GLP isn't there. And so let's get you back on this. But if we just hit her with the five again, like the two and a half wasn't enough, right? And the five was too much. So I had someone, a friend, tell me, look, I I'm micro dosing my GLP. And I was like, oh, that's like, how did, how did you work that out? And so it's pretty, a fair amount of, like, YouTube videos on all these different things that people are doing. But in the end, you can buy sterile vials and inject the pen into the vial and then use an insulin needle to take it out, oh, and then adjust your dose, right? So we didn't know where to begin. So, you know, we obviously talked to ardents Doctor and worked the whole thing out, and we just decided, like, we're gonna start with, like, a half of what's in the vial. So shot it in, drew out half, gave it to her, truth be told, she didn't have any, didn't change her eating, which was great, but I didn't see any real impact on her blood sugar. So then you're like, yeah, like, Okay, well, let's just move up. So the next week, she did a little more, did a little more. I think we're in like, the fourth week of it now, and. And we're only going up by bits. So to give context to it, though, there's no like, this is no dosing strategy for anybody. We just went to half, like, we basically injected it into the vial. Figured out there was about 30 insulin units worth of of the GLP in there. Gave her 15 of them. Didn't work next week. We were like, do 18? Like, we didn't know, you know, like, so like, 18 didn't really work. This week was 20. I'm seeing it impacting our blood sugars now. So next week we'll go to like, 22 and it's a slow process, but we don't want to jump too far, you know what I mean. And so, and we're and we're adjusting as we go, we'll try. 22 we'll try. We'll keep going. And who knows what the answer is gonna end up being like, maybe, I don't know, but I know other people heard putting little bits in every day, like, instead of giving themselves all of it in one shot, I don't and then I've heard people say, Oh, I tried that for a while and it didn't work. But my point is, is that everybody's out there trying to figure out how to dose this for themselves. When they're in this other situation, they're not just trying to lose weight or they, you know, it's not type two diabetes, but it's tight, it's type one. And they're trying to find this balance between is it help? Because it helps Arden with her PCOS, and it helps her with other stuff. And I noticed her not rubbing her wrists as much and stuff like that. Like, if you ask her about it, I don't know what she would say, but like, you know you're she's your kid. You've been looking at her for a long time. Like, you know, Arden's got creaky wrists, and she'll rub them. And sometimes, you know, you don't see her do it as much. Or you know her, you know, is this, you know, helping your periods. And she'll be like, I don't know, Dad. I'm like, okay. But then she came off it, and she's like, Oh, my cramps are terrible. I'm like, Uh huh. So, like, it is, I think it's helping her with a number of different things. It sounds like it, yeah. And it's all just, you're just trying to figure it out. And because the doctor's like, I don't know, try this, you know, because I don't know, I'm hoping that one day they do studies on all of it so they can dose like that. You know, directly from the doctor. I'm assuming one day they'll give you vials of it, and you'll draw it up and and use it that way, if you have type one, or maybe type two, or anybody who knows, like, I don't know, it's interesting. And it's still in its infancy, really, even though it's been around for so long. Anyway,

Roxanne 32:24
my sister has been taking a natural glps type supplement, what? And she's noticed some benefits from that.

Scott Benner 32:33
What are we talking about? You know, what's called,

Roxanne 32:35
I'm trying to remember what it was, but something one of my bariatric websites think they they were, they noticed would help.

Scott Benner 32:42
But what the neighborhood is, let me see if I can figure out what you might be talking about. So could it be bourbon? Could it be it could be bitter melon, like some formula

Roxanne 33:00
that has a bunch of that has something they fit, that has a bunch of different things that help stimulate the GLP, I think. But she's been taking that one because she's doesn't have any insurance and can't afford the so

Scott Benner 33:15
she's doing basically a supplement over the counter supplement that people online were like, hey, this could help increase your GLP, whatever production use, etc. Okay, yeah. Well, you know, it's funny, um, I put a post up not too long ago, and I just said any supplements you use doesn't matter how crunchy or weird or like, you know, common, like, could you list them here? Because I've been like, for years, I keep thinking, and people ask me all the time, like, could you have somebody on to talk about supplements? And I'm like, it's hard to know. Like, who really knows what they're talking about, right? Like, so, like, you don't want to bring somebody on who's like, you know, cinnamon, you know, or, you know, true enough. When I Googled what you asked me, bourbon, bitter melon, fenugreek, cinnamon, probiotics, uh, turmeric. Like, best virtual like, these are things that popped up that are just like, Look, these are things that might potentially increase. GLP, one secretion for people. Like, I don't know if it does or not, but what I finally kind of came to was, if I'm waiting for someone to come down from high and say, Listen to me, if you take, you know, I don't know fentanyu, Greek, which I don't even know what that is like, you know what I'm saying? Like, this is going to do that. I don't think that's ever going to happen. So why not let people just say their story, like, I use this thing. I feel like it helps me. I'm not selling it. I'm not telling you to buy it, but it's from my experience, it's worth a shot. Like, I'm gonna do, like, a short series of that for people like, like, look, I don't know if this is gonna help. I don't know if it's a scam. I have no idea. But here's what this person said about it. You know, if your sister found something that was that she feels like is helping her, like, God bless. You know what? I mean? Yeah.

Roxanne 34:59
Yeah, like, I was talking to my my nutritionist, bariatric coach, and she was telling me about that one because I'm because she knows I've been doing the bondaro, and she's like, this is one that I found that'll do it naturally for some people that can't afford it. So I told my sister to

Scott Benner 35:15
try it. Yeah, it's where, I mean, listen, is your sister lost 50 pounds? It's

Roxanne 35:19
like, she hasn't lost much weight yet, but she's only but she says she's noticed differences with her cycle and everything good for her, you see,

Scott Benner 35:27
isn't that that's awesome, like it helped her with something. Yeah, exactly, yeah. Who even cares if it didn't help her with the thing that like? Or if, by the way, if she took it for a month and she's like, you know, this, do a damn thing for me, then she can stop taking it. People at least deserve to hear what other people are talking about. And I don't mean like, in the like, stupid, like, you know, cinnamon takes your diabetes away. Like, not dumb like that. But over and over again, we did that myth series right where, because people, that's a real common thing around diabetes, like that, the joke about cinnamon, but, you know, Cinnamon has been shown to help lower blood sugar levels, but not in type ones. Like, it's not, it's not a replacement for insulin. Like, and those things get confused. So if somebody's taken a couple of cinnamon tablets and they've got, you know, and they see some benefit from it, like, good for them. Like, you know what I mean, like, and it's just, it feels like people want to argue all the time about everything. I mean, that just seems obvious, right? I would think that the first time somebody said, Hey, you know, I took cinnamon and I noticed, I think I have a little more insulin sensitivity. And then some other person comes running in and is like, don't say that. You're gonna kill people. They'll stop taking their insulin, like, and you're like, Oh, my God, well, that was that overreaction to what I just said. And then, you know, years later, there's, there's this side of the argument, that side of the argument. People are online, you know, yelling and screaming about whatever I would say. I don't know if any of these things do anything, but here's what people are saying about it. And here's a real person who listens to this podcast and was like, you know, I take bourbon and I think it helps me. I think it's a net positive to share all that stuff and let people go find out what can or can't help them. Makes

Roxanne 37:05
sense to me, because there's all kinds of things that I see all the time for PCOS and stuff, different combinations of supplements and things to try. And I'm like, Okay. I was like, I'll try it. Yeah. Like, if it doesn't do anything, it doesn't do anything, but it's, it's natural stuff that's not gonna hurt. It's

Scott Benner 37:24
worth a roll. Like, and, yeah, I take your point. Like, you know, maybe someone's trying to make money off you. That would suck if that was happening, right? But, yeah, if you're in a bad enough spot, like, you take a try something and see I, you know, it's funny. Like, as an example, I hear from people, you know, I've athletic greens, or, I guess they want to be called ag, ag one sponsors the podcast, they buy a couple ads a month. I drink it right, like, so I wanted to try a green drink. And I tried a few of them. I couldn't stomach them. I got the Ag one. I was like, Oh, this tastes good, like, and I took it, and I thought, I think this is, like, beneficial for me. I noticed that it is and I feel better. I'm gonna keep drinking it, keep drinking it. And I don't know how much longer after that. But then one day, I get an email and ag ones like, you, you know, we'd like to buy ads. And I was like, Oh, I actually, I actually drink ag one. I was like, awesome. And then you, you know, ads go up and you hear it's snake oil. It's this, it's that, it's a rip off. It's too expensive. If there's it's not right, like, and then there it's somebody else will be like, I drink it, and it really helps me. And, like, in the end, I'm like, Listen, if it helps you, it's great. And if it doesn't do anything for you, then it's not for you. I can't spend my whole life arguing about whether or not a green drink. It's a great way to get your vitamins and minerals and whatever else. Like, it's just this person takes it and says, hey, it's valuable for me. This person doesn't think so. Like, okay, you don't use it and then you do it, like, whatever. It just, it's so weird how it falls apart. Yeah,

Roxanne 38:59
I've seen some of those. And that's the hard part about trying to post things that are helpful, is like, because there's always going to be somebody that's going to come against it the other way, yeah.

Scott Benner 39:08
Roxanne, I went to your Facebook page. You look like a different person. Isn't that something? Wow, yeah. Let's read. And

Roxanne 39:19
I updated things a little bit. Yeah, that was the other thing My nutritionist told me. She goes, You need to update your photo, your photo. So I did some, and it's the one on the profile pages from right after I had surgery, so that, like, the middle of, middle, end of May. Yeah,

Scott Benner 39:36
listen, I have the same experience. People are gonna think that this story is like, old, but it's it happened again. Like, Arden sent me a photo of myself the other day, and she goes, holy crap. Like, look at this. And she's like, you like, fundamentally, don't appear to be the same person. Yeah, it really is. It's crazy. If you would have found me back then and said, How do you look? I would. Not have thought, like, oh, I seem unhealthy. Like, you know what I mean? Like, I just never would have thought. I'm sure there are people would hear that and go, you're an idiot. It was obvious or whatever. But like, I don't know, like, I was used to seeing myself that way, the aches and pains and the other stuff. Like, I thought that was me getting older, you know. I mean, you look back now and you're like, Yeah, it's pretty obvious. Like, you know, my knee hurt because I was heavy, you know what I mean, but it just as you're living, it just kind of doesn't occur to you. I don't know another way to put that exactly. It's been awesome. Like, I just looked at your picture now and before, and I thought that's the same vibe from my picture, like, now and before. Yeah,

Roxanne 40:38
I was like, I found one from like, 2014 from before surgery. And I'm like, I don't even recognize myself in that picture. Yeah. I'm like, Dude, my face was

Scott Benner 40:47
fat when I get dressed in the morning. I'm still, still knocked over that I'm wearing a large T shirt every day, like, you know, you find the tag and you know, you turn your T shirt the right way. And I look at it, I think that's crazy, that this is a large T shirt, and then I put it on, and it doesn't grab me like it makes no sense to me at all. My head got smaller. I wear a different size baseball hat now. Yeah, I've

Roxanne 41:15
got three sizes of pants right now, just because I don't want to go buy too many more pants because, like, I can fit into a size six, but then I have some 10s and twelves that still fit around the waist still, so I'll wear those one sub touch. But it's like this. And then I have some aids. So I was like, I'm like, Okay, what parent? What size is this one? Let me see how well they fit today. And I'm slowly getting rid of the ones that get too big when they fall off on themselves, fall off by themselves. I'm like, Yep, good for you. Too big.

Scott Benner 41:44
I give mine away to, like, to a charitable thing, as I lost, I haven't lost much weight recently. Like, I'm pretty stuck at this spot, and it's my fault I'm not exercising enough. I know that that's the next step to this. And I'm just, yeah, just not getting it, having said that, like, my wife, like, will look at her sometimes she's walking through the house, and I'm like, Are you, are you trying out to be a circus clown? Like, what is happening right now? And she's like, what? And I'm like, your pants. She goes, Oh, I know they're falling down. And I was like, yeah. I'm like, why don't you switch? And she's like, I will. I will. She does it very she does it slower than I did. Like, I left the size, and I was like, I took the clothes, and I was like, I am never gonna need you again. But she's a little more careful about getting rid of her clothes. But she's just, it's ridiculous, like you could, I genuinely think I could put, like, a medium sized child in her pants with her sometimes I'm like, Kelly, get rid of those. It's so life changing. Seems like just like a but not like, just the stupid thing to say, but it really is

Roxanne 42:45
like, I still go into the stores and have to remind myself I don't need to go towards the bigger side stuff anymore, and I can actually, we went on a cruise this summer, and I actually bought dresses for the first time. Oh, that's awesome. Different ones. This leaves listing. I'm like, Oh, this is kind of cool. Yeah, I was never, I was always too big, but I didn't feel comfortable wearing a dress, so I got all kinds of cool new dress clothes.

Scott Benner 43:10
And, yeah, it's awesome. I one of my great moments was like, it's like, I don't know, like, two summers ago or and I was at my my mother and father in law's house, and they have like, a pool, and we were sitting around, and I don't get by a pool very often, and they have like, you know, these like, kind of tall bar chairs, but they're kind of like, you know, springy, and they lay back a little bit. And I was like, sitting in the chair, and I brought my feet up and put them, like, on the bottom of the seat, and I was kind of sitting there with my knees up hit me out of nowhere. I was like, I've, I've never done this in my entire life. Like my thighs would have been pushing my stomach. I wouldn't have been able to breathe if I sat like that, you know. And I was like, Oh my God, that's so crazy. And it seems like probably the dumbest thing to people, but like riding in a car and you don't get sore, or, you know, on a long trip, or, like, this does the littlest things, Oh, yeah. It's so much less about how you look and much more about how you're feeling and how you're interacting with the world around you. I think those are where I notice it more. Yeah. And

Roxanne 44:16
I'll run into people that I know, like, I ran into somebody I hadn't seen a while at work, and she's like, I almost didn't recognize you.

Scott Benner 44:25
Has anybody asked you if you're sick because you've lost weight? I have had that, yeah, yeah. I've had that a couple of times. One of them was with a friend, and so after the awkwardness is over, he just looked at me and said, like, I thought you had cancer. He's like, I was so worried when I saw you. And I'm like, Oh God no. I'm like, Thank you, though, I appreciate you being concerned. But he's like, that's how different you look. My primary care

Roxanne 44:47
says I should gain a little bit more weight. She goes, now you're at the bottom of the healthy range. I was like, Okay, well, I was like, I'm working on that. That's like, the Manjaro keeps the blood sugar where it is. I. Stopped losing, and now I'm able to gain and get gain back up, go back up, because I think 120 is where

Scott Benner 45:04
I want to be. Yeah, there's probably some exercise, like some weight resistance exercise, that would help you gain a little weight as well. Oh,

Roxanne 45:11
yeah, that's yeah. I have got to get into doing the strength training to get my muscle tone back. And maybe that'll help with some of the saggy skin. Yeah. Oh,

Scott Benner 45:23
I think it definitely would I have, like, my muscle tone is good. I'm not like, pumped up or anything like that, but I'm not like, jelly or anything either. Like, I know, because a lot of people be like, oh, you know the GLP, you're going to lose muscle. And, like, I think that's people can look into it for themselves, but you're going to lose muscle when you lose weight, no matter what you know. So I do dumbbells and some things to, like, you know, just, I'm not trying to, like, grow or anything like that. I'm just to kind of stay in line with it. And I think I'm doing a good job. Like, I feel, I don't feel weak, and, you know, my muscles are firm, like that kind of an idea. I'm obviously not a body building aficionado or anything like that. But, yeah, I mean, it's, I think it's important to to lift weights at, you know, do, like, lift heavy things when you're losing weight, no matter how you're doing it, but probably, specifically when you're using a GLP, it's probably even more important. I would think, yeah, yeah, oh my gosh. What do you experience with people around you? Have you gotten the you've lost too much weight, are you using that stuff? Like, do you have any of those conversations? Most

Roxanne 46:26
of the time, they just want to know. They just ask. A lot of times they ask me if I'm sick, and they're like, No, I'm fine. Other than, like, healthy stuff, like, it's not, it's like it was on purpose, right? Like I was purposely wanting to get back, get down to where I felt better, because even with the higher weight, I was still having insulin resistance. Yeah, that was the main reason for trying it. The weight loss was just a side effect. Yeah, was a nice side effect.

Scott Benner 46:55
Exactly. It's like a gift inside of a gift. I hear that from a lot of people too, like my body being smaller is great, but I was trying to avoid, and they'll say, you know, I mean, for me, I didn't want to have a heart attack. That's what I was most afraid of. You know, I'm adopted. I don't know anybody I'm related to, so I have no idea if the people I'm related to drop dead all the time from one thing or the next. I have, you know this, this tiny bit of information about my birth mother, which, you know she she died younger during bariatric surgery, like during the surgery, and the way it was told to me. So sorry to like, say it seems like such a bummer, but, I mean, I'm 53 now, I'm fairly past this, but apparently she was kind of forced by her parents to give me up for adoption, and that put her into a bit of a depression for a lot of her adult life. She became like morbidly obese, and then one day, kind of tried to help herself, and then had the surgery. But during the surgery, she had a she went to cardiac arrest during the surgery, she died during the surgery. It's terrible, but I don't know if that's a story specific to her experience, or if the people I'm related to have heart attacks in their 40s, you know what I mean. So yeah, so I'm like, it was Arden left for college, and I had this like moment where I was like, both the kids went to school, like I should try to help myself a little more, you know what I mean. And then that's how all this started. Now, like a year and a half ago, I'm actually going back to speak at something this weekend that I spoke at last I speak at it every year, but so I went last year in September, and by then I had probably lost April, May, June, July, August. This is like six months. I probably lost like 20. I don't know, I'd have to go listen to my diary to figure it out, but 2025, pounds, something like that. You know what I mean, a little more. But today I'm almost 50 pounds lighter. Oh, yeah. And I'm wondering what people will think like if there's going to be another reaction, or if the reaction is just over. You know what I mean?

Roxanne 49:01
Yeah, that's always an interesting thing is, like, is it more noticeable? But, yeah, I wanted to go to that event,

Scott Benner 49:09
but it's a little far from me. I'm sorry. Yeah, I don't want you to travel. We are trying to, actually, I'll be having some conversations this weekend about doing a traveling thing where, maybe, maybe we put up a post a couple months ago now to try to see where, like, Where are their concentrations of people listening? Oh, yeah, I remember that one, right? Who might want to come out. So the people who might be helping me with that, I'm going to get to speak with this weekend, so we'll see what, uh, yeah, see what happens.

Roxanne 49:41
Are you when you came to Austin? Oh,

Scott Benner 49:44
I enjoyed Austin. That was really fun. Yeah, the event was great. Like, the seated like, what we ended up doing in the room, I thought was a lot of, yeah, a lot of fun, and people seem to really enjoy it. But the town was nice. I The one thing I felt I tried to get. Out and do something one night, I just couldn't get in. I was like, oh my god, the lines here are crazy. Got some food, and I went back to

Roxanne 50:06
my room. But like, we try to stay out of downtown Austin. When we go to Austin, I don't know

Scott Benner 50:12
the area, they put me in a hotel. And I was like, Okay. And I'm like, where do I have to because the the talk was at the Capitol, yeah, it was in the Capitol building, yeah. So, like, I was just like, you know, you get there, and you're like, alright, I'll do this tomorrow. Like, you got to figure out, Where am I walking to? Like, where can I get something to eat? And then, like, that night I went out. I was like, God, there's so much going on here. And I just ended up walking around and just kind of experiencing the place, which is, it was really cool. I didn't end up doing anything really, just kind of walking around and taking it in. Yeah, but I'd like to do more stuff like that. It's nice to meet people and say hi and, you know, put faces to like names online and stuff like that. Where are you at, like, with your I want to go back to this so you stop your basal only. You're shutting your basal off at night and and then for a couple of months not even shooting for meals, but then now you're back to shooting for meals again, like, what's your total daily insulin right now?

Roxanne 51:07
That is a good question. I am not sure, can you look and I'm not sure if I can get to it, because it's on the app on my phone. Oh,

Scott Benner 51:16
well, go ahead. If it cuts you off, I'll we'll do it. It's fine. Try it all right, let me see if I can find it, because I'm dying to know, because it's i, if I'm recalling right, you're like, 60 or 70 units. And now then, all of a sudden, you weren't using as much. And for at

Roxanne 51:30
least two months, I had no I didn't even have the pump on. I took the pump off. You

Scott Benner 51:35
weren't even shooting a basal insulin. No, okay,

Roxanne 51:38
yeah, for two months, you wanted to just see what happens if we didn't give any injected insulin, to see what my body would do

Scott Benner 51:45
using a basal overnight now, or is it still zero overnight?

Roxanne 51:49
Nope, it's still, let's see. Let me look at what yesterday was, because

Scott Benner 51:53
we can kind of do the gazentas here and try to figure it

Roxanne 51:56
out. So the rest of the time is point one an hour. Point one way.

Scott Benner 52:01
Yeah, okay, point one. So is it possible you're only getting like, a unit or so of basal a day?

Roxanne 52:07
Possibly because a lot of these on the screen, like starting at, like, what I can see from yesterday, what or from yesterday was like from 12pm it was point one for a little bit, then it went down to zero, then it went back up to point one,

Scott Benner 52:26
and then it auto gave me some

Roxanne 52:29
some stuff, and then I gave myself insulin when I ate. But

Scott Benner 52:34
what are those rough numbers? Like, rough numbers like auto Bolus, and your Bolus about how much is that? Just count it out loud.

Roxanne 52:40
Okay, so it was point five two for the auto Bolus, right? 2.65 was my Bolus. The Auto Bolus again for point three, then point four, five, and then there was nothing else Bolus was until I hit this morning, and I put two in at six for my breakfast, but

Scott Benner 53:01
yesterday was about 3.92 like four units of Bolus, plus what we think might be one or one and a half units of basal. Yeah. So even if we give you credit for like one and a half units of basal, you used about five and a half units insulin

yesterday, yeah, from like 12pm

Yes, versus 60 or 70 before the Manjaro, yeah. Oh, so do you have type one or type two or a lot of, yeah? Yeah, man C peptide is like 60

Roxanne 53:35
or something like that. She said the last time, okay,

Scott Benner 53:38
and you're probably getting a little more. I mean, it sounds like you're getting a lot of bang for your buck out of those beta cells, yeah? Like, whatever's

Roxanne 53:46
in there still, whichever ones are in there, they're working better now. Because, I mean, at one point I was on the u5 100 and still using tons of insulin,

Scott Benner 53:53
yeah, diagnosed at 19 years old. A lot of autoimmune stuff in your, in your in your life, right? You have, boy, yours are the questions like that. I really am super interested in the answers to, like, are you type two? Are you somehow in a 25 year lot of situation, or, you know what I mean? Like,

Roxanne 54:13
yeah, it's, I know. I was like, I'm curious about this stuff. I was like, but there's no nobody wants to look. Nobody knows. I'm like, Okay. I was like, at that point,

Scott Benner 54:22
there's no money in figuring it out. They still sold you a pump in insulin, right? So, yeah, yeah, yeah, boy, that's interesting. Like, you heard the episode with the guy, the 50 year old guy, uh huh, yeah, I did you know 50 years old gets diagnosed. They tell him he has type one six years he's using insulin. They put him on manjarna, lose or zbound, or whatever, to lose weight. He loses a bunch of weight. They completely take him off of insulin for like, two years. He has excursions at his meals, but they're not like, you know, they go up and they come back down again and like, you know, I think he fully expects he'll need insulin at some point. But. Yeah, what a weird story, and not a story you would have heard without these, these injected GLP medications for the wait list.

Roxanne 55:07
Fascinating listen and just, just watching my blood sugar go up and come back down without any insulin was very intro, other than what my body was making, it's finally able to used Roxanne

Scott Benner 55:19
when it was happening for those two months. What an excursion look like, like? What did it go up to? How long did it stay up there? It

Roxanne 55:25
go up to, like, 190 and it stayed for like, an hour or two, and it come back down, depending on what I

Scott Benner 55:33
have, okay, so higher than you would expect if you didn't have diabetes. But not yes, okay, but it comes back down.

Roxanne 55:40
I got to the point where I'm like, I don't like it going up to 200 and stay there, sure. So I decided to put it back on, and which is what she told me I could do if I decided I didn't like it, or just it started going up too high, yeah, put your bum back on.

Scott Benner 55:55
I love you. Just trying things, you know. Yeah. And you haven't stopped taking Manjaro. Since you started taking it, you've been taking it consistently. I've

Roxanne 56:04
been taking it consistently. I was taking Jardiance with it for a while. I'd been taking Jardiance for a while, but she decided in June to stop that. One just didn't need it. Yeah, yeah. She said, with what we were doing, just so that's so while I wasn't injecting, having insulin or anything I was just doing the mondaro Jardiance is a pill, right? Yeah, it's a pill. It was helping with, like the insulin resistance and stuff too, but she thinks it was contributing a little bit to some of the blood pressure issues I was having. Oh, okay, so we decided just to stop it and your

Scott Benner 56:38
blood pressure got better. No, so low. I

Roxanne 56:43
don't know. It's like, I went from having really high blood pressure and on blood pressure medication to them stopping the blood pressure medication and giving me something to make my blood pressure go up. And that didn't really work. So it's still, everybody's like, is your blood pressure always this low when they take it? I'm like, yeah, it's been that way for a while now.

Scott Benner 57:02
Was the journey. It's a daily pill. Yes. Was okay. Did you notice it helped with your insulin resistance before the Manjaro a little bit, little bit. Okay. They're working on a lot of stuff now. But wait, wait, do you see over the next couple of years these, oh yeah, yeah, the pills. They're trying to work out for the GLP and just all kinds of other stuff that's coming down the, you know, they're gonna send up to the FDA and see if they can get, get a yes for so I'm interested to see where it all goes. I don't mind giving myself the shot, like it's fine, but, you know, I gotta be honest, if there was, like, basically a, you know, a pill to take that I knew would keep, you know, my weight where it is, and all the good stuff that comes along with it. And just, I gotta be honest with you, weight aside, just absorbing the iron is such a big change to my life, you have no idea. And it just an increase in my happiness, yeah, you know, just my iron not being low. I know people probably don't think of it that way, but it was a major impediment to, like, just living your life. So, oh yeah, yeah,

Roxanne 58:10
that's like, I'd rather take it if I can take a shot that allows me to have better control of things, and I'm not having to do shots all the time. I'm okay with that? Yeah,

Scott Benner 58:21
right on, right. Okay, all right. Roxanne, is there anything we haven't talked about that we should have? I don't think so. I appreciate you coming back on. Did I ask for people to come back on? Or did you reach out to me? How did this happen?

Roxanne 58:32
Um, I heard on one year would go on one of your weight loss journey, that you were looking for people that were on glps to come on and talk. And so I reached back. I reached out, and was because I'd like to come back on and talk about my journey with the weight loss stuff, because it's been a big difference.

Scott Benner 58:50
Yeah, I'm happy for you. I'm glad you were willing to talk about it. I appreciate it. I get feedback from all the episodes, basically, and overall, like, real positive from those are some people I think don't like the way I talk about my weight. And, you know, I don't know, I tried my hardest, but I think that format was interesting because what you don't like, I guess what you might not get from like, listening, is that, like, sometimes I sit down, it's like, first thing in the morning, I'm like, Alright, I'm gonna take my shot now. And I, you know, you turn the microphone on, I need to take the shot. And you just, you know, it's not like, I'm thinking about it before I sit down. I'm not like, I'm basically in real time going, like, Well, what happened to me this week? You know, like, not a lot, really. Or I couldn't eat here, I eat here, or whatever. Or sometimes, like, just, you get emotional out of nowhere, like, you're like, Oh, I can't, you know, I can't believe this. How have you taken it, like, as a person who've gone through this, has it been, what's it been like to listen to it?

Roxanne 59:41
It's just nice to know some of the stuff that I'm feeling is or things I think, or things I'm going through. It's not just me that it does. Other people have those same experiences as they lose their weight.

Scott Benner 59:53
Okay, that's good, because that's what I wanted from it so and you know, you never hear the good stuff. You only hear like three. People were like, you know, say something bad to you about everything, everything you do. It's so strange. Roxanne, like, you know, yesterday is a good example, right? Well, over 10,000 people heard the podcast yesterday. If you get like, one like people, somebody's like, Oh, you, you know, I don't like this. You're like, oh, geez, that sucks. It somehow you forget that the 9999 other people are like, this really helped me. Thank you. You're like, oh, okay, nice to hear back once in a while like, oh, this was good for me. So I appreciate that excellent. Really cool for you to come back on. I want to wish you continued. Luck is sounds like you're really you're doing as best you can and better, you know, for all the different issues you have, and I'm glad that you're that you're happier and healthier. So exciting. It's nice to see as like,

Roxanne 1:00:50
I still look at pictures, and am I going? How did I was like, that's such that doesn't look like me?

Scott Benner 1:00:55
Yeah, no, I know I now think of myself as looking like this, but it still will startle you sometimes. Yeah, yeah. Because that story I told earlier that was sort of in the beginning, like, while the weight was coming off, and you'd like, see yourself, and you'd be like, That's not me. And they're like, Oh no, that is me. Okay, hold on a second again. That probably sounds silly to people having gone through it, because it felt silly when it was happening to me. I'm like, That's the dumbest thing that's ever happened. Like, how? What do you mean? Like, but there it is. Like, you turn a corner, and you're like, Who is that? And it's, you know, it's you. I will tell you, I'm super excited to go back and speak at this thing I have in the past. Like, I was once at an event, and they had a camera crew in, and I just said to them, like, look, please. Like, you know, can you stand them on top of a 20 foot ladder if he wants to record me, like, hey, could he shoot? Could he shoot down from the ceiling? Do you think as much as you go up there and let it go, because you're there to do what you're there to do, and I'm not going to stand up there feeling awkward in the lead up to it. You do there is that like, oh God, like, I wonder how I'm going to look. Like, I'm probably not going to look great, you know? And this is the first time that I'm gonna go to something like this, and I that's not gonna pop into my head. So it's just been really awesome, like you said. So all right, well, Roxanne, thank you very much. I appreciate, I appreciate you sharing this with us and for coming back on the show. Well, cool. I don't know, I don't know what we'll call this one, but we already use the best title for you, for anybody who's a fan of the Steve Martin movie, but we'll see what we can do. Hold on one second. Okay. Okay.

Us. Med sponsored this episode of the juice box podcast. Check them out at us, med.com/juice, box, or by calling 888-721-1514, get your free benefits check and get started today with us. Med. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to omnipod.com/juice, box. That's it. Head over now and get started today, and you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. If you're looking for community around type one diabetes, check out the Juicebox Podcast. Private Facebook group, Juicebox Podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast, type one diabetes on Facebook. Are you starting to see patterns, but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording, doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it? You want Rob do?

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Scott Benner 12/28/24 Scott Benner 12/28/24

#1393 Website Update

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COMING SOON

#1392 From Start to Finish

Saana is the mother and wife of a type 1.

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Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox Podcast.

Today's guest is the mother and the wife of someone with type one diabetes, and her daughter has all five markers, so it's very possible she'll have two children with type one very soon. Please don't forget 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 looking for community around type one diabetes, check out the Juicebox Podcast. Private Facebook group, Juicebox Podcast, type one diabetes, but everybody is welcome. Type one type two, gestational loved ones. It doesn't matter to me if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast, type one diabetes on Facebook. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com

us med is sponsoring this episode of The Juicebox Podcast, and we've been getting our diabetes supplies from US med for years. You can as well us. Med.com/juice, box, or call 888-721-1514, use the link or the number get your free benefits. Check and get started today with us. Med, this show is sponsored today by the glucagon that my daughter carries, G, VO, hypo, pen. Find out more at gvoke, glucagon, com, forward slash Juicebox. My

Saana 2:06
name is Sana. I am the mom of a 13 year old, 11 year old and a five year old. Our 13 year old is the one with type one, and then my husband also has type one as well.

Scott Benner 2:22
And your name, I pronounce it like the box I get into to warm up sauna. Yep,

Saana 2:26
that's exactly it spelled differently, but that's exactly how you say it. Same country of origin even,

Scott Benner 2:33
yeah, oh yeah. The so you're from Tel people are from Finland

Saana 2:37
originally, but I live in the US now. I live in Louisiana now, but I am from Finland originally.

Scott Benner 2:43
How many Finnish people do you believe are rocking the Louisiana accent?

Saana 2:48
Probably not that many.

Scott Benner 2:49
This might make you pretty unique, actually, awesome. So the reason I it's funny, I kind of don't care where you're from, until I see the type one and I wonder, Is your husband finished as well?

Saana 3:01
No, my husband is from here. Originally came here as a foreign exchange student and went back, came back to visit, started dating my now current husband, who lived across the street from the family I stayed with, and we went back and forth for a while, and in 2005 we got married. So stupid, I've been here a little

Scott Benner 3:22
while now. Yeah, stupid boys, I got you Okay, so, but you know why I asked? Right? Because, yes, there's a pre a high prevalence, right?

Saana 3:32
Very prevalent. And I actually didn't know that when I married my husband, obviously, I knew he had type one, but I didn't know that about Finland being so prevalent, but Yes, apparently it is.

Scott Benner 3:44
Yeah, in hindsight, do you have any auto immune issues?

Saana 3:47
Oh, yes. So, you know, it's funny, because, you know, listen to your podcast and you're always asking people the list of, Oh, do you have this in your family, or this in your family? And I go get that, that, yep, that that too, yep. And that. When we took my son to his first endocrinologist appointment, the endocrinologist took the history, and she looked at us and she said, Oh, your kids didn't stand a chance.

Scott Benner 4:13
Well, what I was gonna say is, like, finish, people, please have a heart. Don't go knocking up people with auto immune issues. Like, really, you're asking for Yes, really,

Saana 4:21
I know, yeah. So my husband has type one. I have celiac, which actually was diagnosed after my son's type one diagnosis, okay, but my dad also has celiac. My mom has shergin syndrome, which is another autoimmune and then there is diabetes in my husband family, his grandfather had diabetes, but we're not exactly sure if it was type two or type one, or possibly type one misdiagnosed as type two. There's mental health. It's all there. You

Scott Benner 4:55
got it all.

Saana 4:56
We got it all. Yeah,

Scott Benner 4:58
you guys should moved. An island and just enjoy your lives. I think so I have that thought all the time, by the way, I'm like, why are we doing this? Let's just give up. Why don't we go sit on a beach and just live out our days? That's

Saana 5:11
right. Yeah, I like gardening. So I could just grow my own stuff and just sit there and be happy.

Scott Benner 5:18
I swear to you this morning, 6am 6am Kelly wakes me up. She goes, Hey, Arden's high, and Arden's away at college. And right before my eyes were open, I knew what it was. I was like that kid tried again to slip through the night with a pod that was almost out of insulin. I know this is what happened, right? And whereas I did wake up just as she was running out of insulin, so I was kind of wrong, but still, it was just a it was an old, beat up site, and it just wasn't working well overnight. And so I send her a text, I don't get a response, which, I mean, 6am I'm not really expecting a response. So I call, she doesn't answer. I wait a few minutes to see if she sees the text. She doesn't, so I call again, and I get the, what I now believe to be the classic text Exchange, which is stop all in capital letters. I say, your pod ran out of insulin. You need to change a pod Bolus, whatever suggested insulin there is, etc, right? And I don't hear back from her, but I can see on night Scout that she does it. So whatever it's done, yeah? But then I'm laying there and I'm like, you know, it's funny. I told you I wasn't going to curse unless you cursed. Are you planning on cursing? Because this will make me feel better.

Saana 6:32
Well, I wasn't planning on cursing, but you're welcome to. Won't judge you for

Scott Benner 6:36
okay? Because I was sitting in bed and what I thought was, and this is a quote from my brain motherfer. I was gonna sleep in today, and instead, like, not in, but you and I don't record till noon today. So I was like, I'm just gonna sleep till eight o'clock because I was gone all weekend. I don't know if you know that I'm old, but like, I had to get up on Friday morning at six o'clock. People are gonna be like, Oh, boo hoo. I have a job. I get up every day at six o'clock, but I'm a podcaster. I don't get up every day at six o'clock, so to get up on Friday at six, I had to be at the airport by seven. I had to be on a plane at eight. I flew somewhere with dirty, sneezy people. I got off the plane, I went to the hotel. I had a nice dinner with people, but still, you know, it was late. I was up all night. Then I had to get up early in the morning and then talk all day. And I know, right, all of you out there are like, I change tires on trucks on the side of the highway. Please tell me more about how talking all day is tiring, but it really is.

Saana 7:33
No it is.

Scott Benner 7:34
I agree it's exhausting. So I'm exhausted. I go have dinner with Erica. You know, Erica from the like the mental health stuff, yes, first time I ever met Eric in person. Lovely. We sat and had a nice dinner, but I had to wake up at 2:30am to get into an Uber at three to get on a plane at five, right? So anyway, I'm not going to bore you with the whole thing, but let's just say I was tired when I got home. Well,

Saana 8:01
you know, type one never takes that into consideration.

Scott Benner 8:05
And then Monday, I had to work, which is fine. I was up on time and moving, but last night, I was like, oh geez, I am getting older, you know. So tomorrow I'm gonna do the crazy thing of sleeping till 8am

Saana 8:18
right until that time. Do it, yeah, take the opportunity. And if

Scott Benner 8:22
I told Arden, what happened? If I said, Hey, if you would have just changed your pump last night before you went to bed, daddy could have slept till eight o'clock, she'd be like, stop complaining. So right, yeah. Anyway, it's I don't care. I don't know what going to an island would fix about that, but in my heart, it feels like it would.

Saana 8:36
It just feels better to think about that. Anyway, I'm

Scott Benner 8:41
so sorry. You're coming on the podcast today. Actually, I like your list here. History of autoimmune diagnosis in children. Husband and son are type one. You have a daughter with three markers for type one. Well,

Saana 8:53
a five, actually, now, but you know who's counting? Well,

Scott Benner 8:57
I guess you are, and I guess you got to the end. Is she like? What are they telling you? How far out? So,

Saana 9:02
of course, you know they don't. They don't know. They can't tell you. But we've done two annual visits with her now to get her antibodies tested and glucose tolerance test. And she just barely misses the mark on the glucose tolerance. So she she goes a little hide. She comes back down on her own. So she's not ready for insulin or anything yet, but we're just kind of watching it. She might, she might get diabetes for Christmas.

Scott Benner 9:28
Diabetes for Christmas. I think that's already the title of an episode, But nice try. Yep. Did they talk to you about teas, the old or a drug like that that might push it off? Would that even be something you'd be interested in if you take insulin or so faux ureas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with GE voc hypo pen. My daughter carries GE voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people. With diabetes, ages two and above that, I trust low blood sugar. Emergencies can happen unexpectedly and they demand quick action. Luckily, jivo kypo pen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store GEVO kypo pen and how to use it. They need to know how to use G vo kypo pen before an emergency situation happens. Learn more about why G vo kypo Pen is in Arden's diabetes toolkit at G VO, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulin OMA, visit gevok, glucagon, com, slash, risk for safety information. I don't know how you guys order your diabetes supplies, like CGM pumps and testing equipment, but at our house, we use us Med and I'm gonna walk you through the entire process right now. I'm looking at the email from us med. It says it's time to refill your prescription. Dear Arden, please click the button below to place your next order. Then you click the button. That was it. Two days later, I got this email. Thank you for your order from us. Med, we wanted to let you know that your order and it gives you an order number was shipped via UPS ground. You can track your package at any time using the link below, and then there was a link, and then it showed up at our house. Now I'm going to walk you through the entire chain of events. On the 29th which was the Saturday I clicked on the email. On that Monday, the first I got an email that said the order had been sent four days later on the fifth the package arrived. If you can do it easier than that, you go get it. But if you can't, us, med.com/juice, box or call 888-721-1514, get started today with us, med, get your diabetes supplies the same way we do.

Saana 12:05
Yeah. I mean, we did talk about teas, the old when we first did the very first gluco tolerance test, though she failed, I'm going to be the person who's going to be hated by all who hear this when I say that we actually decided against it, which sounds absolutely crazy, because when I get online, you know, and all these Facebook groups and things, everybody wants to get on T Z yield and wants to push the diagnosis further and try to extend it, but we talked about it, and for her situation, the type of child she is, I think, A the treatment to do, it would have been difficult, and then we would have had to, it's not available where we live. We would have had to move, travel, like, five hours away for like a week, stay at a hotel. You know, cost of it all that now not to say that that's the deciding factor of cost, you know, I mean, we do what we need to for our kids, but my husband, being type one and and our son, we talked about it with that as well. And kind of felt like, as crazy as it sounds to want your child to be diagnosed sooner rather than later, we almost felt like the pushing it back would maybe just push her into like the time frame of her having just left for college, being on her own for the first time, not being, yeah, we would almost rather her still be at home, where we can still help her with getting, you know, started with it, and getting comfortable and all of those things before she leaves, you know, and that type of thing. So with all that considered for right now, we chose not to do tease the old whether it was the right decision or not, I don't know. Well, we'll see. But she's seen her dad, you know, deal with this her whole life. She's now seen her brother deal with it. It doesn't scare her. She's actually waiting for her Omnipod. And so, you know, for for her, it was just the best decision for us to not, not to do teas. Listen,

Scott Benner 13:59
you don't have to explain it to me, like, I think anything you decide is the right thing to do. Also, I'm pretty sure half the things I've done in my life have been wrong. So you know, if you wake up the next morning, you figure like, oh, I guess it wasn't that bad. But no, I take your point and pushing it off to not be right around college makes sense to me, honestly.

Saana 14:19
Because from what I understand about it, it's not taking it away completely. We're just kind of extending the timeline. Yeah, you know, you're hoping

Scott Benner 14:27
to to slow it down from arriving. How about other stuff? Like, I know this will sound like out of the box, but like, have they thought about putting her, like, on a real, like, low dose of a GLP or something to help her beta cells along, or anything like that.

Saana 14:40
Well, it's funny you say that because her endocrinologist hadn't mentioned anything about that. But I spoke with another type one just last week, honestly, who mentioned that same thing, and I was they have their next appointment next month, and I was actually gonna mention it because you're now the. Second person to ask me that, so I don't know that might actually be a good option, possibly. I

Scott Benner 15:07
mean, nothing to lose, really, you know? I mean, if she tolerates it well, and you can talk to a doctor about, like, maybe micro dosing it, not exactly using as much as comes in the pen, if not necessary, because you don't want her to, like, give me, she's a kid. You're not looking for her to lose her to lose her appetite. I'm sure she's not trying to lose weight or something like that, right? No, yeah, right, so you know, but if you could take in just enough to just act as a crutch, maybe, if that would help her, who knows? I mean, there's studies about it, and plenty of people you may have heard like, there's a couple of people who've been on the podcast who have had, like, pretty significant implications, right? Like getting off

Saana 15:44
I've seen that. It's really amazing. Honestly. I don't want

Scott Benner 15:48
anybody to misunderstand GLP. Medications don't make you, like, not have diabetes or anything like that, right? But some people's beta cells are working ish, and something about the GLP for some people, you know, ads takes away a little bit of the the weight, I guess, from the job, and then the beta cells can, like, can hang longer and do what they need to do. So who knows, but yeah, I mean, listen, talk to a doctor and see what you think. Yeah.

Saana 16:16
Well, definitely, you know, it's, it's an open option, for sure. Cool.

Scott Benner 16:20
All right, so you said something that threw me off a second ago. It took you until your kid was diagnosed to know that you have celiac, but you grew up with a father with celiac, so when you had celiac symptoms, how did you not say, you know, I probably have celiac?

Saana 16:32
Well, you know, we, we tend to try to ignore our own symptoms. And you know, life is busy, and I don't, I don't know, I have no excuses. So funny thing is that I listened to the episode after my son was diagnosed with Arden supplements, and, you know, all of our gut problems, and I said, You know what? I think I need to start some supplements. And you know, I was, I was taken, and I still take some of those, actually to this day, but and it helped, and then it didn't. And finally, I said, You know what I think I need? I think I need an appointment with a GI doctor. And sure enough, would

Scott Benner 17:13
you tell me what your symptoms? What were you like? Living with just

Saana 17:17
a lot of bloating. I didn't have the throwing up, thankfully, but other GI symptoms, but then back and forth between, then not being able to digest very well and not, you know, being able to go and just just ongoing pain and bloating and Gi, you know, craziness. How

Scott Benner 17:40
do you manage now, do you just eat a certain way?

Saana 17:42
I just eat gluten free. I mean, that's, that's all i That's all I do and ever

Scott Benner 17:48
did things just like, get better. Like, are you in a better place? Or is it just like, is it marginally better? Is it like, oh my god, this is amazing. What kind of person it

Saana 17:57
is much, much better. Now, honestly, I forgot to say, is it going to go I also had started to get, like, the brain fog and the inability to focus and like, couldn't look at something and have a listen to something else at the same time, and like, enough to where my husband was, like, this is not you. Like, something is off your your brain is something that's wrong with your brain. Turns out it was my gut, but all of that. So I've been gluten free since January of this year. So about, you know, nine, almost nine months. Yeah, and the brain frog is gone. I have energy back. You know, all of that. It's awesome. It is much, much better. So most definitely,

Scott Benner 18:37
Well, I'm glad you figured it. How old are you? By the way,

Saana 18:39
I am 40 at the end of this month.

Scott Benner 18:42
I'm glad you finally got it all straight. Your father stays gluten free.

Saana 18:46
He does, yep, his actually was the type where, with the skin rash, no is how he was diagnosed when, of course, you know, after that endoscopy and all of that to confirm, but he doesn't really get a lot of GI issues. He obviously doesn't eat gluten, but could and wouldn't get, you know, the GI issues. So that's kind of interesting, crazy,

Scott Benner 19:11
how different ways that it impacts different people. You know for sure, those people have, like, that silent celiac where, like, they really, like, don't have any outward symptoms, but obviously there's like damage happening inside, and just really something, yeah, yeah. Really interesting. Both your parents are from Finland, right? Yes, yes. Okay, In what world I'm sorry to go backwards. How are you in Finland? And you're like, you know, I'm gonna go to Louisiana for a little bit. How does that happen?

Saana 19:37
Wow. I just knew I wanted to do the foreign exchange student program I had, you know, a lot of people, honestly, a lot of kids in Europe do it. So most kids know about it, and you know, knew I wanted to do that. And when you sign up for the company that brings you, you don't get to choose where you go. They just place you somewhere. Oh, so it was kind of just by chance I happened to be placed over here that,

Scott Benner 20:05
oh, so you don't get to choose the place, no. Oh, and

Saana 20:09
actually, up until a week before I was leaving, I was supposed to go to Michigan, had everything bought, you know, packed for that type of that different from Finland, as far as you know, weather and stuff goes. But then last minute, they said, Oh no, it's not going to be Michigan. It'll be Louisiana.

Scott Benner 20:28
You're like, okay, more shorts. All right. All right, okay. And what did you

Saana 20:34
study? This was in high school. So, yeah, yeah,

Scott Benner 20:38
there's no real like, study. I gotcha,

Saana 20:40
no leftist High School.

Scott Benner 20:42
Is there a lot of confusion between where the chef from the Muppets is from, or, do you think people generally know it's that he's Swedish?

Saana 20:49
There's always confusion Sweden, Finland, and even Russia gets like, clumped into this. So

Scott Benner 20:55
somebody has come up to you in your lifetime and said, like, oh, the Swedish Chef is from Finland, right? And you're like, No, no, yeah, yeah,

Saana 21:02
yeah, and no. And then I tell somebody, I'm from Finland, and then the next time I see them, you're from Sweden, right?

Scott Benner 21:10
I mean, I'd like to laugh like that wouldn't confuse me, but, you know, I think it's possible that it would. How old was your husband when he was diagnosed?

Saana 21:19
So he was diagnosed in 95 he was 11, actually the same age my son was when he was diagnosed as well 11 So, and we met in 2001 so he was diagnosed in 95 we met in 2001 got married in 2005 so I've been around for the majority, really, of his type one journey. Yeah, you're saying

Scott Benner 21:40
you started dating and when he was 15, is what you're getting. I'm just joking. How old were you when you started dating? Well,

Saana 21:46
I mean, we, we met when we were seniors in high school, and then we started dating the year after. So, gotcha,

Scott Benner 21:52
gotcha. Did this boy chase you around? Or did you? Did you show interest in him? How did this end up? Oh,

Saana 21:59
well. So I think it was kind of a mutual thing when I, when I came to visit, and we decided to, you know, start dating. But then once it, you know, of course, I went back to Finland, and we were long distance. He most definitely was, he

Scott Benner 22:16
loves me. And, yeah, he was all love sick when you left and you were like, Oh my God, He came all the way to Finland to seem like the whole thing happened.

Saana 22:24
Yeah, he took me to Paris and proposed to me in Paris, and

Scott Benner 22:28
it's like, I can't let this girl leave again. My God, when you say it out loud, I think this for most people who come on and they tell their stories, when you say it out loud, do you think, oh my god, this is like a four episode arc on like a CW show, right? That's nice, though. So you guys meet as seniors in high school. What do you know about diabetes while you're dating? Like, how much does it impact your dating life back then?

Saana 22:54
This is, I guess, embarrassing to say the least, but I honestly did not know that much about it, like I knew he had type one. I knew, you know, he had his his shots, and he was still MDI until first years of our marriage, even he didn't get his first pump until right before our son was born. So I knew he had his insulin. I knew he took shots, you know, and at that point he was still on he didn't get on Landis until like, 2006 so for the first, very first years, he was still on, like, you know, regular fashion, right?

Scott Benner 23:28
SWANA, this is really interesting, though, like, because this is not me saying you did something wrong. I'm just asking the question, okay, but how does that happen? How do you say, like, I didn't really know that much about it. Is he keeping it from you? Are you willfully not sticking your nose into his health business? Like, how does that balance work? Right?

Saana 23:48
And I think about it now, now that our relationship is very different, and especially since my son's diagnosis, I think the beginning part of our dating, in our marriage, you know, he experienced major, major burnout and end of high school, right when we met through the beginning parts of college and those years. And so I think for him, you know, it wasn't something he wanted to really talk about. It was something he had to do. He didn't do it very well at the time, but you know, enough to stay alive. He didn't want a relationship to be where, like, I felt like a mom, and of course, I didn't want to be the wife that felt like a mom either, sure, like I'm not your mother. And so I think it just fell into this place of he didn't really speak about it too much, and then I didn't really ask. Gotcha, you know, we would go places. He would forget his insulin at home, you know, sometimes he'd turn around and go get it, and sometimes not and, you know, and that was, I mean, hindsight. Why didn't I, of course, we didn't have internet, you know, like we do now, quite the research capability. But like, why didn't I research at that time and go, ah, like, how can I, how can I help? Been, you know, a little better through this. But can

Scott Benner 25:02
you do you have enough? I mean, memory of this to tell me if you were to go out and he's like, I don't have my insulin. Like, did you know that's bad? Or were you just like, Oh, if he doesn't think it's a big deal, it's not a big deal. Remember

Saana 25:15
I got like, I knew it was bad, was bad. And he would go high, but he would just say, Oh, it's okay. I'll just take it. When I get home, it'll be fine. Like, I didn't realize what that high meant. Long term, like, I didn't realize how bad bad was I see. So, like, I knew it was bad honestly. You know, lows

Scott Benner 25:35
weren't really an issue. He wasn't using enough insulin to be low, yeah. Like, I

Saana 25:40
didn't really learn about lows, I guess because lows really weren't that much of an issue. Highs were an issue and so, but I didn't really know what those highs would bring further down the road. So

Scott Benner 25:52
now your son's diagnosed when he's 11. How old is he now

Saana 25:54
he's 13. Now he was almost 12. So it's been a year and a half. Year,

Scott Benner 25:59
okay, year and a half. You've been a mom of somebody with type one. You've been married for, I mean, I'm gonna guess at least 13 years

Saana 26:06
20. Yeah, coming, coming up almost 20.

Scott Benner 26:09
Did you guys get married when you were 20 years old? Yes, we did. I thought we were young, and now I'm realizing, apparently you were younger. It's, I'll get back to that. But you've been the mom of a child with type one for a year and a half. Put yourself in a car. You're driving to dinner. You're gonna be gone for a while, just like an old date. You're gonna go to dinner, you're gonna see a movie, you'll be home later, and your son goes, I don't have my insulin. It's okay. I'll take it when I get home, what do you say to him? Right?

Saana 26:38
Say you turn around, right now and you come home to get it like there's no, no way I would, I would let him do that. Yeah, but

Scott Benner 26:49
why? What do you know now that you or what do you feel now know or feel doesn't matter to me that you would have that reaction.

Saana 26:57
Well, I think, and to this, I think we do need to backtrack a little bit before my son's diagnosis, because I started to learn. I started to learn what those highs met a little before, when my husband actually started having years later, but he started having some, some complications, some issues with his eyes. He's had diabetic retinopathy in both eyes, like countless related surgeries, cataract surgeries, you know, all that stuff. So sitting through all those appointments, sitting through, you know, all of those things that go with those complications. You know, obviously at that point, you know, it was very apparent, you know, that those eyes do affect you. And all of this is is happening now, but that was years later. I think it took our son being born for my husband to really, like, kind of snap out of that burnout and really start doing a little bit better. But even once he started doing better, he wasn't doing great. I listened to one episode, and there was a girl, I can't remember her name now, but she was talking about her pump being kind of like just her basal machine. I went back home, and I said, I found you. And he said, Oh, yeah, that's That's true. That's pretty much what I used to do. And so even, you know, when he finally got a pump, which wasn't until, you know, it's been 13 years ago. Now, he wasn't really doing great with it, but it was better. And so all the doctors and everyone he saw had always just said, like, this is kind of like, no one had really put out the idea that a normal, A, 1c was possible for him. It was just kind of like this idea, like, I remember going to one doctor's appointment, and the lady looked at us and said, Well, he'll be dead before 40, you know. And that was just kind of like the idea that it just it is. How

Scott Benner 28:55
old do you think you were when that happened? How old was he?

Saana 28:59
Oh, probably. I mean, in our 20s, mid 20s, maybe, oh, wow. So

Scott Benner 29:05
you got 15 years left, right? But that didn't stop him. It was the bit you think it's the baby that stopped him.

Saana 29:11
When my son was born, he did start doing a little better, obviously, you know, like I said, he got a pump finally, and but then he was kind of using the pump as a basal machine, you know, like, still not doing great with it. And I will tell you to this day that honestly, what really happened was my son's diagnosis. As crazy as it sounds and as crazy as it sounds to like, I'm not happy about my son's diagnosis, but I truly believe that it saved my husband's life.

Scott Benner 29:37
Let me cut you off and then tell me why. Okay, hold on a second. You got to be the 20th person to say this to me. I'm going to spend my whole life trying to understand this whole thing. And I genuinely believe, and I don't mean this as condemnation on the on people. I just think this is something. This is something that's just very human, and I can't figure out the origin of it. And. Why it happens, or how this is always the same story that brings people out of it. But, yeah, it really is fascinating. It really, it just, I know there's somebody's gonna say, there's a simple answer. Like, people feel, you know, like they can't, they're never gonna die, right? They're impervious and everything like that. Well, everyone always thinks it's not going to be them. But like, why? Like, why? In the face of all that information, why? In the face of being told by a doctor you're not going to live for 15 more years, having needles stuck in your eyes, then lasers, then like, and you're just like, Nah, probably not me, probably not you. It's literally you. It's happening right now. Yeah, okay. I'm so sorry. So your son was born, and you think he, how do you think he saved his life? So

Saana 30:43
my son's diagnosis finally, is what I think really, really saved my husband. Because then finally, when, you know, year and a half ago, my son was diagnosed, it's almost like at that point he had to step up. Because, you know, I mean, ultimately, no matter what you want for yourself. We might not take care of ourselves, let our own health go to to the worst places, but we want the best for our children, right? And so he didn't want our son to see a bad example, obviously. And so, you know, he had to start doing better with Pre Bolus, saying doing better, you know. And then, because of my son's diagnosis, I started doing research at that point for him, not for my husband, but for my son. And so I found your podcast and and I'll, I'll put you there as well for saving my husband's life, because had I not found your podcast, you know, and found out all of these things about the pump that my husband already has, that we then wanted for my son as well. Listening to all those episodes, all of that, I started tweaking my son's numbers. I got him to where his a 1c was 5.3 and he was level. And so my husband sees that. All of a sudden, I go home and he says, Well, could you look at my numbers? Now, mind you, he had never shared his like I was not following him. I was not following his numbers. I was not logging on to his T connect and looking at his numbers. I was not doing any of those things before, but all of a sudden, when he saw me looking at the algorithms, finding out about all this information for my son, he saw, maybe you can help me, too. And we started looking at his numbers, started changing, his basal started changing, you know, all of those things. And now he is also in the fives with this, A, 1c, and he has not ever been that way in the, you know, since 95 when he was diagnosed. I mean, are you

Scott Benner 32:39
sort of telling me because I just got also, I want to point out that I said I was tired, but I just got very misty when you when he asked, Can you look at my numbers? Because my expectation is, is that he just felt hopeless before that, and that he didn't really right, he didn't really think he could do better. He just thought he was supposed to be a better role model so that this thing that befell him wasn't going to happen to your son. He didn't actually think he could do better. He thought he could pretend to do better, so your son would try. Is that right?

Saana 33:09
Right? Maybe. And I think you you might be right. And it's just accumulation of the unfortunate events of doctors that just kind of never gave them the correct information. Never really, you know, we never knew that a glucagon type of product existed before my son was diagnosed. None of my husband's endocrinologist had never mentioned anything like that ever to him before.

Scott Benner 33:33
You know what it feels like? Like a movie where somebody takes a beating so bad that they close their eyes and just think, like, go ahead and finish me. Like, you know what I mean? Like, right? Like, like, you just take that beating over. And He's 11, he's, I mean, he might have been beef and pork, or was he, could he have been beef and pork, or was he regular and mph the whole way? Do you even know,

Saana 33:53
I think regular mph, I think so. He's

Scott Benner 33:56
that way his whole life. And then he's not taking it super seriously, because he's like, Oh, I can just take it when I get back that kind of thing. Then insulin gets more modern, etc. But he doesn't really come along with it. He's still in the old way of thinking about it. And he probably just thinks, this is diabetes, like, this is what's going to happen exactly that lady's right? I am going to die early. There's nothing I can do about it,

Saana 34:21
right? And the things that they teach you when you are on regular or MBH, all of those insulins that don't apply anymore, now that you have a pump and you have a basal, or you know that you can go long periods of time without eating, and your basal, if it's correct, is going to just keep you going, like those types of things that he just never knew, but because I started researching them for our son, you know, now, all of a sudden, he was able to almost right, hop on, hop on that train as well. So I

Scott Benner 34:54
just love that idea that he looked up one day and he was like, Wow, this thing that they told me didn't exist. It's right in front of me. Like, give it to me. I want this. So it wasn't apathy. I feel like it wasn't apathy. He just thought it didn't exist. And once he saw it, it sounds like he was excited. Like he's like, I don't know how to do this, but right this finished lady that I, that I Harang into marrying me 20 years ago, seems to have figured something out here. So, like, let me go.

Saana 35:18
Got it girl, thank

Scott Benner 35:19
God I chased her over to Paris with that ring. She could have saved my life. Does he have regret about the length of time it took him to get to it?

Saana 35:30
We haven't really talked about it in those terms. I don't think. I mean,

Scott Benner 35:35
by the way, people who don't realize you've been married for 20 years, you're like, I don't know. I don't talk to him every week. Go ahead. I'm

Saana 35:42
sorry. No, which is funny. You say that because we're the couple who do everything together like we are never separate. If someone's there the others, they're like, we're not the couple that does separate things. We do things together. But just, I guess, with that particular question I hadn't asked. But I mean, who would who would go back and say, Oh, well, I would love to have all these eye surgeries? No,

Scott Benner 36:02
and I didn't mean, I didn't mean regret, like he'd done something wrong. But I've had a lot of conversations. The one always sticks out in my head. I probably haven't spoken about in forever. But a lady got hooked up with me over Facebook before, I had a Facebook group, before this podcast was really very big. To be perfectly honest, somebody on Facebook told this person, you know, if you message that guy, he'll help you, which I don't know if you guys realize, but like, privately speaking to people was probably how I one day was like, maybe if I just spoke to one person and recorded it, other people could hear it, like, you know what I mean? Like, that thing I hadn't thought of prior. She was older. She had diabetes for a long time. She had a lot of kids. I jumped on the phone with her, and I talked to her, like, for 45 minutes, and I just kind of like, hit, like, highlighted some ideas. She messaged me the following day and asked if she could call back. And I always, like, say the same thing, half jokingly and half serious. I'm like, Oh God, I should have never given that person my phone number. Like, I'm gonna be talking to him for the rest of my life. But I was like, yeah, yeah, sure. Call back. Right. So she calls, and she's crying when I answer the phone. And of course, at first, oh, my God, did I, like, I hope I didn't make this lady upset. You know what I mean? Like, I've just said to her, I really think if you got your basal right, and, like, learned how to, like, Bolus a little bit, get into me. Like, didn't say a whole lot. She's just crying. And she says, Why didn't anybody tell me? Yeah, that's all. And then she just started talking about the wasted time and the wasted health and where she was, and the things that weren't going to get better. And the end of her, like, she was just consumed with, you mean, this was all there was to it, like, Are you fcking kidding me? You know what? I mean, like, my eyes don't work and I'm gonna die earlier and basal and Pre Bolus my meal. Like, what the hell? Right? You know, right? I've never spoken to her again. I hope she has shaken that feeling, because she's the reason why. When I talk to people who show that regret, I say, Listen, you know, now everything from here forward is going to be better, you know, I can't do anything about the past. Keep going. Yeah. Anyway, that's so awesome. Like, so you helped your son, but you consciously thought he can't do it the way my husband's doing it. Like, I gotta figure something else out, right?

Saana 38:15
I don't think it started with that mindset. I don't I don't think that's where my research started. I think I just, you know, I'm a, I'm a person who likes to research anything and try to figure out how to do it perfectly. And so when I was faced with this type one here, you know, here's this child, I just started researching, how exactly do I do this? Because up until then, I wasn't that like, I said, like I wasn't that involved in my husband's scare. I wasn't changing the pump sites. I wasn't, you know, counting the carbs. I wasn't he was doing all that. I wasn't doing any of the things. And so I just felt like I needed to research it for myself so I could do it for for my son. And so in that research, I quickly found your podcast and the Facebook page, and just started listening to episodes. And you know, then I would go home and and tell my husband about each episode. And just, I think it just naturally went that direction with me, just wanting to to know more because of my son, which I probably never would have done that type of research or, like, started looking for it if it wasn't for my son's diagnosis,

Scott Benner 39:24
because you didn't feel a responsibility for your husband, like that, right?

Saana 39:28
And that's how the relationship was set up from the beginning, like I said, like he didn't really want me to be that, that mom figure. And, you know, in the beginning, it was a lot of burnout and depression and that kind of thing affecting it, and then once he was out of that, the relationship of that still just stayed the same, right? Like I wasn't really involved in it that much. It's

Scott Benner 39:49
interesting. You said it like that. Also, I want to say, before I move on, you're low in my ears. I'm not, for people who are listening like I'm not talking over her, like I feel like she's done when she's not. So I'm. Sorry about that, no, and by the way, and what will happen too, is Rob will pump you up, and you and I'll sound like we're the same level, and then people will be like he's full of it. Didn't sound like that. But right now, while we're recording it, it's what's up. So I apologize if I step on you. No, don't okay. That all makes sense to me. That all makes sense to me. You go out, you figure it out. You get your son straight. You whip out that a one c1, after one afternoon at dinner, you're like, check this out. Suckers. Like, pull that out right on the table. Your husband's like, whoa, whoa, whoa, whoa, no more needles than daddy's eyes. Let's figure this out. And he comes to you, were you surprised? Like that wasn't a leap for him to just ask you for help, but it might have surprised you a little bit, because you hadn't been involved until

Saana 40:38
then. It did it. It did surprise me, because this whole time, it wasn't that I didn't want to be involved. He didn't really want me involved either, you know, like he didn't want me following his numbers. But I think maybe part of that was because he knew his numbers weren't great, and, you know, I mean, it's, it's, yeah, embarrassment, like I'm not doing so great, so you don't want someone looking at that, but I'm sure he didn't really know how to get out of that either, like we already established, you know. So finally,

Scott Benner 41:08
he must have just been like, Oh, this is it?

Saana 41:12
Like, this can be done, you know? And so, yeah, did

Scott Benner 41:18
it enhance or change your personal relationship at all between the two of you.

Saana 41:22
Oh, for the better, absolutely.

Scott Benner 41:24
Yeah. Did you get a pool out of or something like that? Were you like, hey, you know, I've been talking about a pool for the last couple years. I was just thinking, No, but seriously, like, did you, like, like, how did it change your relationship? No,

Saana 41:36
I think, you know, I mean, we had a great relationship before, but when you really put yourself out there like that and ask for help, I mean, it was vulnerability from his side that, you know, obviously I hadn't, hadn't seen before, quite to that extent, you know, because, like I said, you're putting yourself out there and saying, Here's my numbers, they're not good. Like, how do I get better? Clearly, you've now figured out how to do this. How do I do that? Yeah, you know. And so it put conversations out there that, you know, just, just a closer relationship between us than, than even what we had before.

Scott Benner 42:12
Yeah? Because I keep thinking like, if he he's hiding his health, which is, to some to a large extent, not to some extent, to a large extent, is hiding who he is and what's happening to him, and then once he opens up to you about it, it must be a relief for him to just be like, Oh, I don't have to hide this stuff anymore

Saana 42:30
and right screen it out together. Yeah, yeah, yeah. Like,

Scott Benner 42:34
like, do a whole little thing here where we're a bit of a team, which you probably were in other things, right?

Saana 42:40
Oh yes, absolutely. Like, we, we've had a great marriage, and our marriage was not suffering at the time, but just that part of it, you know, was that we weren't doing that part together, and so now we're doing not just my son's care together, but you know, his as well. Obviously, I don't check he changes his own site still, and I don't, you know, like I'm still not his mom, but hold

Scott Benner 43:03
still, I'll rip off that CGM for you. You're not doing that stuff.

Saana 43:08
No, no, no, but still, you know, it just really, I think did bring us closer than we were before.

Scott Benner 43:14
It's awesome. Do you ever have that feeling though? Do you ever see him not doing something you're like this, this chuckle head, if he just Bolus right here. Thank you,

Saana 43:23
yeah, but now it's almost like, because now I have the knowledge to I can, you know, whether it just be more gently or jokingly or whatever, just kind of tell them like, you know, maybe you should have Pre Bolus a little more there, you know, because I have the knowledge now, so I try not to be nagging or annoying and or any of that stuff, but I can find a way to still mention it now and and, you know, sometimes I mean, even as our children, who are type ones, grow to be adults. I mean, I don't want to micromanage my son forever either, but they need someone who's still gonna, you know, sometimes give you that nudge,

Scott Benner 44:07
I think so I tell Arden when, like, when she seems, because there's times she's, you know, obviously annoyed. She also has, she's talked about it on here before. She's like, I don't know what it is. She goes as soon as you tell me to do something I don't want to do it, right? From my experience, that might be something you got from your mom, but, but, but at the same time, like, I get her point, like she's like, I know what to do. I'm happy to do it, blah, blah, blah. But if you tell me I'm she's like, I get like, instantly irritated by it. But there are times where she still needs someone to say, hey, look, I think you should, you know, Bolus here, or do this. Or like, you know, I'm looking at your graph, and lately it seems like you're not Pre Bolus in your meals. And, like, just want to remind you to do that, like, you know, right? And I know what you're saying. Like, there's kind of ways to slip it into conversation where it feels a little less directive. Yeah, but I also, when I do that, I feel like, like, I prefer to be direct, but she doesn't love it, and so, like, we find our own language around it. Right? The other night, she was talking to Kelly on a FaceTime from school, and I popped in. I'm like, Hey, what's up? And we were just chatting a little bit and everything. And I said, Hey, I have two questions. I know you don't like me asking you about this stuff, but like, I just need a yes or a no, because I think you need some settings changed, and I need to know if this is happening or this is happening, so I know what to do with the settings, or what to suggest to you for the settings. And she's like, Dad, stop. Don't just don't say whatever you're gonna say. She goes, we need therapy over this. And I was like, you know. And by the way, what she meant was I need therapy, because every time you talk, I'm like, no, go away. And she even knows, like, when we talk about, she's like, it doesn't make any sense. I don't mind when you tell me about anything else. It's really, you know, it's interesting. And so I try to really take that into account. And I just said, okay, okay. I'm like, Listen, I'm going out to pick up a pizza right now. I looked at Kelly and I said, I need to know how much GLP she shot this weekend, and I need to know what her insulin to carb ratio is during the day. I was like, you find out those things for me, right? Yeah. I get home and Kelly goes, she said she did the things she told her to do. I was like, oh yeah. I'm like, she wouldn't be more clear about that. She goes, if you asked her, she does it, that's as much as she wants to talk about it. I'm like, That's it. I'm like, All right, whatever. But even that like is like, that could sound crazy to people, but I've been watching this adjustment happen slowly for so many years. Like, I get that she doesn't want to talk about it a lot, you know, and so I'm trying to be respectful that, and not push our relationship. Like, I would never want to push our relationship to a point where she's just like, that's it. Get away. Because, to your point, about your son and maybe about your husband too, like you, she still needs help sometimes, right? You know? And I don't want her to get to the point where she's too proud to ask, and we've gotten to some weird place where it can't happen. So I just, I played the game by her rules. Mostly that makes

Saana 46:59
sense. Yeah, oh, absolutely. And, you know, now seeing that, of course, it's a balancing act of how we deal with my son's diabetes now as well, because we've seen what it does. You know, it's just, it's different than, I guess, for a lot of first time, you know, diagnosed never has dealt with type one before, you know, and the doctors tell you, Oh, a little bit of high is okay this, long as they come back down. But now, like, we've seen what it does. And so I think that, like, even more hyper aware of highs and and, but at the same time, it's a balancing act of, how much do I micromanage and then not get onto the mental side of you know, so, right? Because

Scott Benner 47:43
the doctor's not wrong. A high one time is not going to hurt anybody, but you're like, unless it turns into a situation where you get used to being high and then you don't bring your insulin when you go out, and then you don't worry about it. Then 20 years later, I'm sitting in an office with a guy who's like, getting needles in his eyes. Like, all that happens next. Yeah, yeah. It's not that it's going to happen. It's that you now have proof that it could happen. And also, let's probably say I've been talking to you for 45 minutes now, I bet your husband's a pretty bright guy. He's probably a pretty hard worker, probably does, like a great dad all this stuff. Like he's not a guy who's running around ignoring like, he doesn't appear to be a guy who's running around ignoring his health, right? No,

Saana 48:22
absolutely not. No, he's very smart, very hard working it just, I don't even know how to explain it. That's just how it fell, like I said, between, you know, the years of doctor's appointments and, you know, not really getting that information. I mean, endos, let's be honest, don't really give you as much information as you would hope that they do sometimes. And you know, I mean, nobody said, Hey, if you eat pizza and you Bolus for it, 5050, over an hour, you might do better than Bolus for all up front, you know, like, those are not the types of things that you learn at an endocrinologist, but I learned those things on Juicebox Podcast.

Scott Benner 48:59
I'm glad that's all. Listen, you know, I met a person this weekend who told me their kids a one season the elevens, and they can't figure out how to get it down. They're working with a doctor and the whole thing. And I'm like, How can a doctor not figure this out? Like, are you kidding me? An 11 like, you can't figure this out. Late ladies, very motivated, interested, like, not intelligent. Like, the whole thing doesn't matter what is in your note here about hospitals and first, endo misinformation. What did you want to talk about about that around your son's diagnosis? Well,

Saana 49:28
initially, I think I requested to be on the podcast right after my son's diagnosis, and then, you know, nine months down the road, I ended up having to cancel that appointment and reschedule for another nine months. So I think at that time, when I made those notes, I had thought to talk about his diagnosis a little bit, and the way that went the hospital that we took him to absolutely gave us horrible, horrible advice, sent us home with regular insulin for him, really, yes. Kept giving him regular in the hospital. And when I said, this is not working, like this is not just finally, I had to beg them to discharge us, and the prescription they sent for him was regular. So like this still happens, and I feel for the families who truly don't know better, because they don't have type one prior experience. You know, I knew this is not the insulin my husband is on like this is not what works for him. So why are we just 2022 yes, no, 2023

Scott Benner 50:35
in America, the United States of right around here, yes, yes. Way to go everybody, yeah, okay, jeez. Makes your head mix my brain,

Saana 50:46
yeah. Then we're sent to the closest endocrinologist that was an hour and a half away from us, and just we were given so much misinformation about the pump we wanted to put him on, which my husband wanted to my son wanted to get the same pump as my husband had, which is the tea slim. But this particular endocrinologist office only prescribed OmniPods.

Scott Benner 51:11
You know, you can write anything on the prescription. You can actually just write them if you want,

Saana 51:18
since they didn't have any experience in the teas limb. But we insisted on wanting that pump. All the information that came to us about the pump pertain to Omnipod. So they kept telling us things like, Oh, well, you just leave it alone. It's gonna it'll learn. It'll do its thing. Just don't change that. I'm like, No, I don't this pump doesn't do that. It No, it doesn't,

Scott Benner 51:41
by the way, if somebody was here right now from Omnipod, they would tell you that their pump doesn't learn either. So it's, oh my god, like we were having such a nice time zone. And now I'm gonna and now I'm gonna curse, not for fun, like, you know what I mean? Like, how, if you're listening, please, if you work in an endocrinologist officer, you're an endocrinologist or a nurse practitioner or something that's involved with helping people with helping people with their diabetes. Why don't you spend a whole Saturday morning and learn how all the pumps work? Go crazy, maybe put five hours worth of effort into it. What the fuck like, right? You just imagine, like, how ridiculous that is, that they're like, Oh, we only know how this one pump works, by the way, we don't really know how it works. We just know what, you know. I mean, we read the first page and it sounds like it learns or something. So good luck. But like, come on, when

Saana 52:30
I finally got the correct information and pushed them on it and said, I don't think that's how this pump works, they say, Well, we're so sorry. It's a learning curve for us to just bear with us. Why we learn? No,

Scott Benner 52:48
no, it's my son. Is

Saana 52:49
not your learning curve, and we will be finding another endocrinologist. Thank you very much. And we did, and we are now at an amazing office, granted. Now we drive two and a half hours to it, but we'll gladly make the drive for a great doctor's office. So there are great ones out there as well. But like, I just feel for the families who don't have the prior knowledge and they, you know, it takes so long to finally say, to find the information for yourself and say, Okay, this doctor is not giving me the correct information you

Scott Benner 53:21
should feel for me, who's gonna have a stroke, making this podcast one day because you gotta cut us a break. There's a learning curve. What did insulin pumps just come out this week? And you, by the way, are just like, if your husband doesn't have type one, maybe you say, oh, maybe this is something like, yeah, no, maybe I should cut him a break. Cut him up. Holy, Christ. It's like, if you had a house built and when it was all done the roof was on the inside. They're like, Oh, you got to cut us a break. It's a learning curve for everybody. Just just if the sprinkler goes off there, you're not going to be trouble because all the shingles are on the ceiling. How could you be that? Like clueless in your own profession, that's every day. It's every goddamn day. Like, if on Monday, Jesus Christ, if I was in charge of your health, and on Monday, someone said to me, you don't know a thing, I'd go, I am gonna go find that thing out. And by the way, I've said stuff on here before where I'm like, I should probably go learn more about that, and then I actually do it. And I'm just making a fucking Podcast. I'm not, like, I'm not your doctor. At the beginning of this, I say to you, hey, if you're listening to this, you should know something for sure. Don't listen to anything. I've said, go talk to your doctor, and then you come on and tell this story. And I don't know, I'm so upset. Now, no, my God, I know you think I'm joking for the show or something, but it's really, really, genuinely upsetting that someone can say, this is my profession, but I don't know how to do it, and you go, have poor health while I figure it out. But hey, here's the secret. I'm not really gonna figure it out, right? Unbelievable. Well, thanks to all of you crappy doctors, I have a podcast. Thank you. I appreciate it. Yeah, dummies. So,

Saana 55:00
you know, I think that's where that, that's where that note had came from. And, you know, just talking about his, his diagnosis story, which was, you know,

Scott Benner 55:08
thank God we didn't talk about that first,

Saana 55:11
no, but we've, we've moved past it. Now. I'm sure you're fine.

Scott Benner 55:15
Also, by the way, it took you 18 months to get on this podcast. Look at me acting like I'm special. I apologize that that happened.

Saana 55:21
No, not at all. I think, honestly, you know, that's that's time I needed to get to, you know, where I'm at now, with what I feel like were more important things to talk about than than just, you know, diagnosis stories.

Scott Benner 55:38
I would say also that there's part of the reason it takes time to go on the podcast is because when people reach out who are more newly diagnosed, it's my hope that they'll have more experiences before they come on. Like, because every once in a while, it's nice to hear from somebody who's just like, you know, gobsmacked by the whole thing. So you can hear that perspective, but mostly that perspective lacks some direction. So, oh, absolutely, yeah. It sounds like you guys are doing really well. I'm happy for your husband and you and your daughter, who's gonna just like cruise, because of all the stuff you figured out, yeah? But,

Saana 56:10
well, I'm sure it's not a cruise, no. But absolutely, like she is more prepared than you know, and we're watching it. It's just, it's crazy to watch it slowly happen. Whereas, you know, my son's diagnosis was very, you know, abduct DKA, you know, all those things you think that we would have known to look for the signs, but, you know, but it's, it's weird to watch my daughter slowly get there, you know.

Scott Benner 56:41
Do you stare at her all the time, thinking about it? Well, I

Saana 56:45
mean, every time she's sick, every time she, you know, I'm like, This is it? This is it now, you know. And I have her check her blood, and I, you know, but I try not to think about it too much, you know? I mean, I don't want to dwell in it, right? 24/7,

Scott Benner 57:01
I'd give you that advice, but I don't think you'd be able to listen to it. So, you know, just do your best to not be consciously like in that space the whole time. Have you had conversations not about the I mean, obviously she sees everybody with the diabetes, you know, suppose that. But have you had more conversations about, like, the emotional sides of it? Like, how do you prep her for it

Saana 57:20
a little bit, not, not a whole lot. Yet it's hard, it's hard to have that conversation before it's time for it. When my son was diagnosed, kids, kids go into the hospital, and you know that somebody comes into the room and they say, Oh, your blood sugar was, you know, whatever. And I'm sure the kids in that moment don't really, necessarily realize what's happening, you know, the doctor came in to our room and said what my son's blood sugar was, and he instantly knew what that meant. And he instantly started crying and said, I don't want to be like Daddy. I don't, I don't. I don't want this, you know. And so it like, you know? Now I've seen that reaction. And so now I think I'm avoiding that conversation with my daughter maybe. But I mean, slowly we're bringing some of that into the

Scott Benner 58:10
conversation as well. That must have hit your husband hard, huh? Yeah,

Saana 58:14
oh yeah. Because, I mean, you don't want that for your for your kids, obviously, you know? And so it was just like this, yeah, weight of heat in when most

Scott Benner 58:25
kids say stuff like, I don't want to be like you, it's because they got older and they watched you get old, and they're like, you guys don't know how to think about things, so I don't want to be like that, not like, like, especially, I don't want to be like you. And it's not a thing your husband can like, control,

Saana 58:40
right? No, nothing you can do about it. Like he instantly knew what it meant when you know that that he was gonna have to do that,

Scott Benner 58:49
tell your husband that would have sent me to therapy. I would have been like, oh, okay, you know what? After we get out of here, I'm gonna go call a doctor too. Yeah, that sucks, dude. This diabetes thing is for the birds. You know what

Saana 59:01
I mean. Anyway, you slice it. But you know, all this bad stuff being said, I will say that, you know, like I said, I do believe that my son's diagnosis, like I said, saved my husband's life, but also saved his life as well, in a different way, like I see so much change in my son, positive change of, you know, being a stronger person than, not than he was before, being able to deal with situations that I diabetes is also going to teach you things and change your personality in a good way as well. So it's not, it's not all that that's

Scott Benner 59:36
going to show you who you are, that's for sure, right? Yeah. So the problem is, is when you're not a person who rises to those occasions and, you know, it sounds like your son is, which is awesome, it's just that, you know, some people, Hey, we've talked about it before, like, Why do like, we've had long conversations about, like, why do some people crumble when other people excel? And right? It's not like one of them tried harder, or something like that. Like, right? It's. Just some sort of, like, internal like, this is how my reaction is, like, this is just what it is. People could say, Oh, you gotta do this or do that, but that's not easy. Like, you know you're having the reaction you're having. It's nobody's in charge of the reaction they're having, generally speaking. So, you know, right, yeah, geez. All right. Well, do you have anything else to add, because this was great, and now all my adrenaline has gone from being mad at your doctor, so it's going to be hard for me to keep going now. But do you have anything, anything we haven't talked about that we should have? No

Saana 1:00:31
I want to thank you so much, because I mean this, this year podcast has truly, truly been such a blessing for our family. You know, I can't even begin to thank you enough, but and thank you for for letting me come on so it's been fun.

Scott Benner 1:00:47
The whole thing is my pleasure, and I appreciate you being so kind with your regards. I would just say that, you know, I said a thing on a podcast. You actually listened to it, figured it out, put it into practice, navigated your family life like you did everything. I just, I just made a podcast. So, yeah, seriously, it's, it's, it's a lot of hard work on your part and your husband and your son and but thank you very much. I appreciate it. I just, I spent a whole weekend with people saying nice stuff to me, and I think I've probably hit my limit

Saana 1:01:16
for nice out.

Scott Benner 1:01:18
I know I can't like, I tried so hard sauna this weekend to accept people's kindness, like, without feeling like, Oh, not me, or like, you know what I mean? Like, that whole thing, which just is still something that's kind of inside of me. I'm getting much better at it. I actually mentioned that I had dinner with Erica, and I don't think she'd mind me saying this one little bit of our What was our private conversation at dinner, but we were talking about that. I said I had an easier time accepting people's compliments than I have in the past. And she asked why? And I said, I don't consciously know, but if I stepped out of my situation for a second, looked at this, I would probably say it's because I've lost weight and I don't mind people looking at me. And she was like, Yeah, that's probably it. And I was like, right? Like, I'm like, you know, it's funny because I didn't, I've never, I've never consciously thought, don't look at me. Yeah, you know what I mean? I guess it just sort of happens. And you don't realize that when someone's saying something nice to you, that it is a moment where everything stops and the focus is on you. And then you get that, and I get that, like, odd feeling where I'm like, Oh no, no, it's okay. It's okay. I also don't want to be a person who is like, yes, on it pretty much I pulled your bacon out of the fire. You're welcome. Can you send a couple dollars over here? Like, by the way, please, nobody send me money. That's not what I'm saying. But like, you know, like, it's, it's hard to be I have my own baggage. And then on top of that, I really do feel like, how I said you earlier, like you did all the work. Like I just, I just sat down, and I was like, here's the stuff I noticed. Helped my daughter. I'll say it all out loud and record it,

Saana 1:03:04
you know, right? No, I totally understand. I'm the same way, but I could say something ugly to you and said, if you'd like,

Scott Benner 1:03:12
I would probably have an easier time with it. But don't worry, there's a couple lunatics online that take care of that for you. Don't need to do that either. I'm all good. Actually, I don't see what they say until somebody shows it to me. And we now have a nice, firm rule between me and them. So all of the people who report to me about stuff I just told them all. I'm like, Listen, don't tell me anymore. I don't care. And so I'm now free of that. Also, nobody start a podcast, because if it gets too popular, somebody's gonna anyway, and it's not just, by the way, here's the other problem now that I said it out loud, each and every one of them thinks I'm talking about them. By the way, if that's happening to you right now and you're listening, that's a mental illness. I'm not speaking about you. You're an amalgam of ideas in my head. I don't actually know your names or or what you've said. So anyway, now they're gonna think Ah, I got him, but you don't, you're just the flea on my ass. So anyway, thank you so much sauna for doing this. I love your name. Have you ever cold? Plunged and then done? Yes, I have

us med sponsored this episode of the juice box podcast. Check them out at us med.com/juice, box, or by calling 888-721-1514, get your free benefits check and get started today with us. Med, a huge thank you to one of today's sponsors, G, VO, glucagon, find out more about G vo hypo pen at G VO, glucagon.com, forward slash juice box. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juice box. Box if you're newly diagnosed, check out the bold beginnings series. Find it at Juicebox podcast.com, up in the menu in the feature tab of the private Facebook group, or go into the audio app you're listening in right now and search for Juicebox Podcast. Bold beginnings. Juicebox is one word. Juicebox Podcast, bold beginnings. This series is perfect for newly diagnosed people. I want to thank you so much for listening and remind you please subscribe and follow to the podcast wherever you're listening right now, if it's YouTube, Apple podcast, Spotify, or any other audio app, go hit follow or subscribe, whichever your app allows for, and set up those downloads so you never miss an episode, especially an apple podcast. Go into your settings and choose, download all new episodes. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording, doing his magic to these files. So if you want him to do his magic to you, wrong way recording.com. You got a podcast. You want somebody to edit it. You want rob you.