Scott Benner 12/27/24 Scott Benner 12/27/24

#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.

#1391 Trust Fall

Aisha has lived with type 1 for over 30 years. We talk about coming out, Afrezza and doctors that don't help.

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

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.

ICE has had type one diabetes for over 30 years. Today, we're going to talk about how she came out to the people around her that didn't understand diabetes. She's going to tell a couple of glucagon stories. Talk about a fresn and how doctors never provided her the basic help that she needed. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. 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 juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com if you're looking for community around type one diabetes. Check out the Juicebox Podcast, private Facebook group. Juice box 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.

Today's episode is sponsored by Medtronic diabetes, a company that's bringing together caregivers and parents of children with type one diabetes. Later in this episode, I'll be speaking with Stacey, a mom of a 12 year old daughter with type one, her experience is an all too familiar one, after losing a lot of weight and drinking more water than was considered normal, Avery was diagnosed, Stacey and her family were suddenly thrown into managing diabetes without any medical background, and Stacy had a chronic condition of her own to manage. The Medtronic champions community really supported them during this uncertain and overwhelming time. Thanks to Medtronic Stacy and Avery found the support they needed. 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 juice box.

Aisha 2:19
Hello. My name is Aisha. Aisha, like that, yeah, Aisha,

Scott Benner 2:25
yeah, I got it. Okay.

Unknown Speaker 2:26
How are you

Aisha 2:28
I'm doing good. How are you doing? Scott,

Scott Benner 2:31
I'm fine, but I talk about this all the time. So are you nervous?

Aisha 2:35
I am very nervous. I'm gonna try to not to get too giddy and excited here, but I am so excited to be here today.

Scott Benner 2:42
Okay, well, tell me why.

Aisha 2:44
Bob back, you had done a series, and you had asked for people to come on and share their stories about leucagon. That kind of touched home for me, because I've been type one for 3233 years, and no one ever talks about leucagon. They give you a prescription, but that they never really tell you anything about

Scott Benner 3:10
it, yeah. So you've heard some of the stories that people have come on and told yes, yeah.

Aisha 3:15
And actually, Artem story was very similar to one of mine that I had in July of 22 that was super scary and hard and incredibly frightening, but it really kind of opened up my eyes to like the need of having we could go on available, and kind of bringing the people around you to know more about it,

Scott Benner 3:40
what happened to you and back then,

Aisha 3:42
it's interesting that we talk about there is no such thing as brittle diabetes, but I think my entire life, I've dealt with so many hormonal changes and different insulin needs, and back in July, I had gone to sleep, just like any other day During the night, my sugar must have dipped low, and when I woke up, I knew I was low, and I was trying to reach for something, for anything. I had always slept with juice boxes by my bed, and that time I had a cheap oak by my bed. And basically what happened for the next several hours was I just kept coming in and out of consciousness and trying to get two brain cells together to figure out how to inject the Chi oak. And finally I did that. Worked really well. I will say that that worked. I was able to come back around about 15 minutes later. The interesting thing about it was like, I was off for the whole day. Couldn't really come out of the fog all day long. I had a wedding to attend that day, and I still went. But I was like, kind of in a thought. Book. I didn't know that you're supposed to eat after you inject with cheap oak. I thought it was kind of like, you know, or any kind of glue gun that you just do it, and then you come back around and you just go on with your day.

Scott Benner 5:15
Can I ask a couple questions? Let me ask so you fall asleep, you're okay when you fall asleep. At some point, while you're sleeping, you wake up with the realization that you're low. Do you actually get to juice or food or anything? No, no, you just kind of drift in and out of it at that point. Yeah,

Aisha 5:33
and it was, it was like it was the most. It was as if I had to Will my body to reach for everything to like. It took everything just to like, reach up to the dresser to grab what was there. And it was that was probably the lowest ever that I had ever been and I live alone, is the other thing I probably should have provided a lot more intro to the story, instead of diving in. And I live alone, and I've always, I've lived alone for 20 years, and I've always been able to manage my type one, and in the early years, like just to go back a little bit. I mean, when we go back to the traditional glucagon kits with the needle and everything, you were always so afraid to use them, afraid because of the mixing, and how would you be able to do that? And then also, they always would have stories about how difficult it was afterwards and how terrible you would feel if you used the glucagon. So that kind of always, I think for me, kept me from using it. And then, at least with the G VO, it was a lot easier to to administer it at that killing

Scott Benner 6:56
you had G vo hypo pen, so you just pulled the cap off and clicked it, and that was it right? Yeah, okay, yeah.

Aisha 7:01
It took a little bit, because, again, the state that I was in was very severe. It was probably the worst

Scott Benner 7:09
from the first time you were like, I'm low, until you finally figured out how to get your hands on gevok, how long do you think that was? Did you say hours?

Unknown Speaker 7:18
Hours?

Scott Benner 7:19
How do you know that when you look back, if you take insulin or so faucinyas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G vo hypo pen. My daughter carries G vo 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, GEVO 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 GVO kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gevok, 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, gvoke, glucagon, com, slash, risk for safety information,

Aisha 8:34
because it took me most at the morning, like, I literally remember in stages to the point of like finally getting the gbook in my hand and literally being on the floor of my bedroom trying to figure out how I was going to do this, and then I would not go to sleep, but basically be out of it for a little while. And then it was very interesting that I was able to keep coming out of it a little bit, but just enough to be able to kind of get to the next step. Yeah,

Scott Benner 9:06
did you have a CGM at that point?

Aisha 9:08
Oh, yes, yes. CGM are wonderful. I love my CGM. But even with that, you know, I'm also hard of hearing, so hearing the alarms go off, it's kind of like two sided sometimes we ignore the alarm so much because we're so used to hearing them go off all the time. And then there's times where you just don't simply hear it, which for me, it would be better to have it buzz than it would for it to vibrate, than it would be for to sound the alarm, because I don't hear that. I did remedy that recently by getting the sugar pixel, and that has a little vibrating pad that I can put under my pillow. And I love that

Scott Benner 9:54
you use the little puck that goes on the sugar pixel and it vibrates that that works for you.

Aisha 9:58
Yes, I love that. That. So cool, beautifully, good.

Scott Benner 10:02
But you look back, I imagine after this incident, so you actually saw a period of time for hours where you were, how low on the CGM?

Aisha 10:10
Yeah, it was pretty much all night, six hours, yeah, like, literally, I would almost stretch it up to eight hours, because by the time I got up, it must have been about 10 o'clock in the morning. No,

Scott Benner 10:24
I'm sorry. I guess what you're describing here is that you'd, you know, maybe your liver was giving off something, right? And maybe bouncing you back up the tiniest bit, and you'd, you'd be awake enough to think, I need something. Then you couldn't do it. And then, you know, you've finally got gvoke in your hand. You opened the package. You were able to open the package. I

Aisha 10:44
yeah, I guess, okay, I did open package. Not

Scott Benner 10:47
exactly sure how I did. Hey, you end up on the floor. Do you know how you end up on the floor?

Aisha 10:52
No, I just got, I mean, I got myself there it was because trying to move, like having mobility of any kind was really challenging trying to, I mean, I remember, like I said, reaching up for the Chi voke, like, literally every brain cell I had was trying to reach for the Chi vo can tell my arm to reach up. And it was as if I didn't have any control over my limbs. And it was really, like it really took focused intentionality to be able to do it

Scott Benner 11:25
in small windows where you were actually conscious enough to think

Aisha 11:28
about it. Yeah, wow, yeah. And yeah,

Scott Benner 11:32
were you wearing a pump or were you MDI at that point?

Aisha 11:35
Yeah, I am. I've actually, I've been looping since I think it's May of 2019, and Omnipod first went to loop.

Scott Benner 11:44
So you are using a DIY system, and it, I assume, during that entire 10 hours, or however long that was, it wasn't giving you any insulin, right? It probably cut your basal completely off.

Aisha 11:56
That would be back in 22 so I don't know if the algorithm had that functionality.

Scott Benner 12:01
I would think it would, I would think, if you're, do you know how low you were reading on your CGM, I

Aisha 12:06
don't even think it was registering. I would imagine then, okay, there's so much technology now that really does, like, I mean, I've been sleeping for 20 years alone. So it's like, you know, there's been times in my life where my insulin needs are incredibly great, and then other times where they're not as much, you know, a lot of times it can be exercise, you know, we know that that impacts our insulin levels, but sometimes it can be just an infection is going on that I'm not aware of, and then all of a sudden that, you know, changes my needs for that time. Yeah,

Scott Benner 12:46
I guess we want to tell people at this point. I want it in your words. But how many people in your life know you have type one diabetes? Very

Aisha 12:54
few. There's like about a handful now, of people in my whole world, but it's not very public. Most people where I work, I don't think anyone knows I'm actually recording this at my office right now, and they do not know I have a small handful of friends. And I think that comes from the fact that, like when I first was diagnosed in the beginning, treatment was definitely different. You're dealing with R and L and rather Atlantis, and you know, we were doing MDI, and that took, you know, like 12 injections a day, and you know, we were covering all our meals. And it was, I was very vocal at that time about it. And what ended up happening, though, was everywhere I met people were telling me that I couldn't do things, that I couldn't jump out of a plane, that I couldn't fly a plane, that I couldn't kind of get to both, that I couldn't drive a motorcycle, that, you know, you can't have this. And that was like, one of the things I remember always is that I would go out to eat with my friends, and we'd order something after dinner, and I'd order a cake or something, and somebody would pull it away and say that you can't have that. And it just got to be that type one was becoming more of my world than I wanted it to be, and it was the first thing that people thought of when they saw me or spoke to me. So through the years, I just kind of like, you

Scott Benner 14:30
wanted that stopped, yeah, eventually you stopped telling people about it, and then that just becomes the norm to people you're related to, obviously know, but right after that handful of people,

Aisha 14:44
right? And I would say, even the people that I'm related to, I don't think they know enough about type one, you know, my siblings, they know that I deal with this, but they don't really understand. No one really knows what it's like on a day to day. And I think that was something that. You know, we deal with this every day, all day, constantly. And it's not just one minute, you know, like, you know, one time a day, you think about it. It's on my mind all day long. I'm trying to make sure that I'm okay, you know, for this interview, trying to make sure when I get behind the wheel of a car, then I'm okay, you know,

Scott Benner 15:21
yeah, with everything one way or the other, it's in your head, right, always, and you don't need other people bringing it up to right?

Aisha 15:30
And in fact, it was funny. I had shared it with somebody recently, and we were at an event, and right away, when he was introducing me to somebody else at the event, he was like, oh, here is Aisha, and she's a type one diabetic. And I was like, that wasn't really relevant to the conversation.

Scott Benner 15:47
Had nothing to do with anything worse, right? Had nothing

Aisha 15:51
to do with anything. And it was also like, it wasn't his story to tell. And I think that's where I get really passionate about it is, you know, this is my story. This is my life, and if I choose to bring you into it and share it with you, that's my business. But it shouldn't be something that limits me or stops me from doing the things that I want to do in my world, right?

Scott Benner 16:13
I agree with you, but I have a question. Let's say that you met that you met that person, then you were at an event, and the three of you rode motorcycles, and the guy that you were with knew that, and you went up to the third person, this is, hey, this is ice. She rides too. Would you been okay with that? Or would you say that's my story to tell?

Aisha 16:32
Oh, that's funny. That's funny. I guess they would have been okay there, because people would ride motorcycles. And it is funny. They do say that about me, by the way, they do say yes. This is Ayesha, who rides a motorcycle.

Scott Benner 16:44
But you know what I mean? Like, listen, I understand everything you just said. I can completely sympathize and agree with you that I don't think anybody should just be walking up to a random stranger and going, hi. This is Aisha. You know, she suffers from the scourge of, I don't know, halitosis. That would be a weird thing to think. Now, if I walked up to somebody else and they had terrible bad breath, I had terrible bad breath, and you had terrible bad breath, then I might go, Hey, this is Aisha man. She's in the club. She can't get rid of it either. And I would assume then you might be like, it sucks. You know, anything I take your point. I like I said, I completely agree with you. I just wanted to make sure people understood that you wouldn't have been upset if you would have shared something in context, right?

Aisha 17:22
Right? I have in the last couple years tried to reach out more. Because I will say, I think, you know, as a kid, I didn't see very many cases of Type one around me at all, you know. And now it seems like there's so many young families that are experiencing it, and it's a complicated, overwhelming, time consuming condition to deal with, and a lot of times, parents feel at loss. That's why I'm, like, so grateful for your show, for the variety of information that you share with everyone. Because you know, like, I can always take something from almost every show that you've ever done. I'm always like, Yep, I understand that, and it really gives community like, for people like me who didn't have a community. This

Scott Benner 18:12
episode is sponsored by Medtronic diabetes, and this is Sarah. Sports

Speaker 1 18:16
are his life. He was nine years old. He was just starting develop his own personality and his own passions and his own independence, and instantly we were afraid that that was going to be taken away. It was a very scary time for me. I would say probably the first couple weekends, there was a lot of fear about what happens if I go low. Obviously, now that we're all in electronic technology, what we do managing his diabetes during athletic has changed drastically. The Medtronic technology that we are using has almost eliminated the fear I have while my child is playing. As

Scott Benner 18:50
far as community goes, have you met other people with diabetes? What's some good advice you've gotten from them?

Speaker 1 18:55
I have met so many people with diabetes. This summer, I had the opportunity to meet others that are using Medtronic technology, and I feel like we have built such a strong connection, because we speak the same language. We don't even have to say what we're going through. I have good friends that are Medtronic mamas that I can reach out to that have been incredibly helpful, and then our Medtronic rep has been phenomenal

Scott Benner 19:23
to learn more about the Medtronic champions community and to find helpful resources and tips for caregivers and families. Visit Medtronic diabetes.com/parents-caregivers Well, I'm glad for that. I genuinely that's my goal. I wanted to say that we're making adjustments to Arden settings. We're changing a GLP medication slowly, and that's causing us to have to change insulin, you know, slowly, etc. It's like a process, right? It takes, I mean, this is taking a few weeks. I was sitting last night, I was folding laundry and watching television. And thinking about Arden's blood sugar. And then, you know, then eventually I got the the laundry done, and then I was like, Oh, I just sit down and keep watching this, this thing on television. But I was still thinking about, like, you know, I think if we move this setting here, or I had a friend of mine say to me, Hey, you know, you're using that dynamic setting on trio, and I'm having a lot more luck without it. Maybe you'd want to try it without it. And it was kind of going through all that. And until just now, when you said, I think about this all the time, it didn't hit me. I've been thinking about this for three weeks, not constantly, but daily, you know, like at least, and even like, art and I recorded yesterday together. We're making these like, silly little episodes where we just pick something that neither of us understands, and we try to figure it out, like, using like conversation Google and like, you know, AI, and we're trying to figure these things out. And they, you know, have these dumb little conversations. And so we're recording one yesterday. You think, if I can even remember what we spoke about yesterday, money, she's like she always says, I don't understand money, and I've never dug into it deeper than that with her. And so we put it on the list, and we sat down yesterday, and we start talking about it turns out it's, you know, not the exchange of goods and services for cash, that she doesn't understand. Like there was, like a deeper conversation. There we have this whole conversation that goes really well we get done, and the last thing I say to her is, Hey, you said you're feeling tired. Have you been taking your cytome? And she's like, No, because the doctor told me to stop taking it for a little while to see what was happening. I said, Well, it sounds like you might be tired. Why don't you read it and see how you feel over a couple of days, and she goes, Yeah, okay. And I said, and on Saturday, we do the GLP, how much did you last time? Let's do this time. This much blah, blah, blah. And, oh by the way, like later I'm gonna text you about shutting off the dynamics. And then I got off of it, and it all feels so normal that until I stepped out of it just now and had this conversation with you, I wasn't like Jesus, man, no one else talks about like that, you know, like, that's not a thing other people talk about. And those other people have a nice hour talking to their kid, and they go, I love you, goodbye. And they hang up the phone. They don't talk about cytome and the dynamic setting. And you know what I mean? Like, okay, so you How old were you diagnosed?

Aisha 22:19
I let me do the math. I hate doing math. And so do you I think I was like, 22 Oh, at the time,

Scott Benner 22:27
is she? You're in your mid 50s? Yes,

Aisha 22:29
shush, yes, I am. I

Scott Benner 22:31
know what you look like. I did. I wouldn't have guessed that. Sorry. I mean, good for you. But

Aisha 22:36
yeah, yeah. I am really grateful that, you know, they're managing it all these years. And you know, there's only been, you know, a few bumps in the road, so to speak. And I think that's the thing, is that, you know, you can have this really great, amazing life with type one. And it's, you know, everything goes really well until it doesn't. And I think you just keep learning about, you know, like, you make so many adjustments all the time with Arden's care, like, Just you try new things you're and I think that's great, because it's not like one and done anymore.

Scott Benner 23:14
Yeah, I can't wait till she gets done in college. And I'm like, listen, obviously this partnership is probably coming to an end. I hope you've been paying attention, because there are a lot of adjustments to make, and especially when you're a woman. Honestly, when you have, like, big feet, hormonal swings, it just adds a level of complexity to it.

Aisha 23:33
Oh, and it's funny, you mentioned that. I'm sorry, that's the value that you mentioned that because I was writing in my notes, I was like, back then they'd be like, when I first even that was only, like, 30 years ago, but they were like, Oh yeah, there's no changes week to week. That's just, you know, you're being silly. It's like, no, there's, there's changes every week. I'm like, I'm having to modify and back then, you know, MDI, you know, in

Scott Benner 23:55
your life, you're telling me you've been told you were imagining that.

Aisha 23:59
Yeah, basically, I mean, care has not been, you know, not everybody has a Scott and, you know, at home that they can help with, you know, determining whether or not somebody says something that's kind of off, off the cup there, like

Scott Benner 24:13
that. I'm just imagining 30 years ago, some doctor being like, oh, that's probably just you, you got the vapors or something. You're just all upset because of your lady time. You don't even know what's happening. Silly, yeah, that's got to be it's just incredibly frustrating because you know it's happening. And you're like, Hey, I'd like to say something to you about this doc. And they're like, you girls,

Aisha 24:34
oh yeah, oh yeah, there you go. Even then, back then, your settings were so set, like they basically told you, one ejection a day, and it was this amount, and that's it, don't variate it due to what you're eating or doing, or any of that you know back then, and carb counting was just coming around the corner at that time.

Scott Benner 24:56
But whether it's then or now, what needs to be understood deeper is. That it's the conversation that's important. Like you might maybe you were wrong, right? But who cares? Have the conversation, because maybe you're right and the guy will go, I'm assuming 30 years ago was a guy right, yeah, okay, yes. And like, so maybe you're right and maybe the doctor goes, Huh? You know what? Let me ask all the other women that I see and see what they say, and if you're end up being wrong, who can there's no damage. Saying it out loud, I say things on the podcast, and I'm like, Look, I saw this thing. I don't know if this is right or not, but, like, you go out into your life and try to figure out if it's right or wrong, if it's wrong, and, you know, throw it away, if it ends up helping it, then great. I don't understand what's wrong with the conversation. You know what I mean? Upsetting. Also, I want to go back to a sec for a second. You look like you're in your 40s, like earlier 40s. Yeah, as you may know, I look younger than I am. I'm just gonna pivot this for a second, because there's no other place for me to tell this story. Okay, okay, okay, so I'm at the pet store the other day. My Oh god, I should just leave these details out, because it makes me sound like an 18 year old, like, you know, who can't find a friend. But I ran out of crickets from I ran out of crickets for my chameleons, and I had to run out to the pet store, because I usually buy them online. They're nicer, they're healthier, they're cheaper, but I had to go out run any it's not the point. I'm in the line at the pet store, and there's a guy in front of me. He's maybe, like, 35 and, you know, he's with his kid, his kids, like, seven, eight years old. They're buying a little frog and about, you know, a bag of water and some other supplies for it. And he's clearly out with his dad on a Sunday, like, getting a little frog to set up at home, you know. And the woman says, Give me your phone number, because some of this stuff you bought, she says to the guy is on sale. And he says, this phone number. And she puts it in. She goes, Oh, I'm sorry that that doesn't work. Do you have, like, another phone number with us? And he goes, No, I guess not. Don't worry about it. And I said, Hey, you can just use my phone number to get the you know, to save the money. And he goes, looks at me, and he goes, thank you, sir. And I was like, sir. Like, what the hell I was like, All right, like a part of me was like, No, you now you can't have the phone number, but I gave him the phone number, saves the money, saves a bunch of money. It was nice, you know, handful of dollars. He turns again and he says, like, he's very polite. And he goes, like, I really want to thank you again. I hope you have a good day, sir. And I was like, twice with this, sir, and I'm like, okay, so he leaves. Now the woman behind the counter, who's like, I'm gonna say, God, I hope she doesn't hear this. I'm gonna say, she's like, 68 okay? And she's like, you know, Hi, how are you? And I said, Well, I was alright till a minute ago when that guy called me Sarah, now I feel old. And she goes, Oh, I know what you mean. Blah, blah, blah, blah, blah, how old are you? She says to me, and I go, I'm 53 and she goes, see, oh my god. She goes, I know exactly how you I know exactly how you feel. I'm 52 and I was like, oh hell. It's like, oh my god. I thought you were almost 70. And then I felt then I felt better, and luckily, didn't say anything that gave that away. But then I felt better, and I came home, and I'm like, Listen, I don't know if you realize this or not, I don't have a ton to say on Facebook, so like, I share stupid little things that happened in my life on Facebook, and I share this in the group, and what came around, and people kind of got me on top of was, you know, did he have an accent? And I thought he did. I actually found myself thinking he might be from Virginia or more south when he was speaking. And people said, oh, he could have been military or, like, have grown up in the South, where that's just a very common thing to call anybody sir, ma'am. And I was like, Oh, that made me feel much better.

Aisha 28:43
I love something. Thought of that. Oh,

Scott Benner 28:46
thank God, because all I could think was, Do I look like I have? Like, he's in his 30s, right? Mid 30s, late 30s, somewhere in there. He's got a kid, right? He's a grown man with muscles and like, you know, I'm saying he wasn't a boy. Like, how much older did I have to look to him for him to serve Me? If that was about age, you know what I mean? Flip me out. I did not like it at all.

Aisha 29:11
Well, we get the same with Ma'am. Ma'am always kind of,

Scott Benner 29:14
you know, swear to God, it might be your dark hair, but like you look very young. Oh,

Aisha 29:19
thank you. You're right. I'm very grateful for that, and hopefully it'll continue, because try, you know, like everybody who's dealing with type one, I mean, I think we're all working to do the best that we can, and I'm grateful that not just looking good or any of that because I but that you feel vital about that? Yeah.

Scott Benner 29:42
No, no, listen, I what? I gotta be honest with you. I'm not a great looking person. It's not a thing. I think about all the time, until the guy standing in front of you going, sir. You're like, sir, what is happening? Seriously, it isn't a thing I think about a lot. But there when it was happening, I was like, Uh oh, this is sliding off the cliff real quick. But nevertheless, I. You're trying to be healthy, is what you're saying. Like, right? You're just trying to take good care of yourself,

Aisha 30:03
right? Okay, but not to even know what. Going back to your story there, it was funny. You were talking about, I only cry on Mondays. That interview, you were talking about her husband, that he was, he's really good looking husband. Oh,

Scott Benner 30:17
my God, I remember, yeah,

Aisha 30:19
hysterical, like we're all laughing along with you. I'm sorry I keep hitting the desk with my chair laughing hysterical, because there are times, Scott, where you sound exactly like my brother. He has the same laugh, the same kind of and I just sit there and I'm like, Oh, that's great. You know, it's, it's nice.

Scott Benner 30:37
I looked up her profile, and I was like, this lady is married to a model. What's going on? Awesome. Like, he's like, he's one of those people where, if somebody said, you like, Hey, listen, you just have to do a little ceremony, and his good looks will transfer to you. I'd be like, I'll think about it. Like, he's a really handsome guy, you know. Anyway, oh, that's not I'm glad you liked it. Thank you.

Aisha 31:00
It was good.

Scott Benner 31:02
I always loved that. Hey, Sean, the truth is, is that I look at like I hear what you said earlier, that the podcast in ways, the podcast has been helpful for you, right? And I just keep it, I try to keep in mind that if I got on here every day and it was dry content about diabetes, and it had that feeling that it had been gone over with a fine tooth comb 1000 times, and every word was perfect. And, you know, it was a script that you could give at a hospital, like a speech, right? That people would just be like, I am not listening to this, you know, and, and I just think instead, like, we'll get on with you, and we'll talk like we haven't even to me got to what's the most interesting part about you, which is something made you a person who does not tell people they have diabetes, reach out to me and say, I'd like to come on the podcast and talk about my diabetes. Yeah, that's awesome. Can you tell me more about what drove you for that? I mean, it's the glucagon story. But is there, is there more to it than

Aisha 31:58
that? I think too. I mean, glucagon is a lot of it, because, like I said, about no education about it. And then, you know, I've mentioned a couple of times before. I say, I've been alone 20 years, and in that time, you know, trying to manage everything. And one of the scary things has always been the use of glucagon, you know, we wouldn't use it because we were worried about, like, what the after effects would be. And then I have to tell you, I know it's not one of your sponsors, and hopefully someday it will be, but for me, back to me now. So I carry both. I carry Chivo. Can vaccinate, and one of the reasons is I've had to actually give myself back to me when I knew I couldn't juice the box out of something I had another low another day. I was standing my kitchen. I knew it was coming really hard and fast. I was having a really rough low coming on. It was coming on, and I could see it coming. And I was I felt a juice box or two or three is not going to handle it, so I had my back semi and I said, All right, let's give this a go. And I shouted, up my nose, so you basically put it into one nose, nasal cavity, and you push the button and it goes right up, and that worked beautifully. It not only brought me back to a good sugar level, but I didn't have any side effects. I didn't have anything afterwards where I felt terrible. And when I did that, I was like, dang. I was like, you know, if people knew, especially if you live alone, that you know, you could do this and not feel terrible afterwards. I get frustrated, like with the providers and stuff. It's like, you know, your patients may live alone or they might be alone. Why not encourage them to utilize lepagon in whatever way you know they feel comfortable with, but to use it. I think we're all afraid of using it.

Scott Benner 34:03
Yeah, no, I agree with you, but I have a question. So do you are you equating using G vo in your other story with not feeling well afterward? Because I would equate that with the hours and hours and hours of being low, not cheap, exactly,

Aisha 34:15
okay, exactly the hours and hours I do not, I do not agree. I like G vote. I still carry it as well. Yeah, the reason why I carry the vaccine, me also, is that there's so many trainings nowadays on Narcan, on how to use it, and I think people have more of a comfort level with just injecting or not injecting. But, you know, utilizing a nasal rescue drug, as opposed to injecting somebody. I think needles are always going to be a concern for people but, but Gebo has a really easy administration, so it's not like the old kit.

Scott Benner 34:56
You're also in this in a unique situation. I don't I want to get back to your. Story, because I have more to add to that, but where you're not telling people, you're not telling people around you that you have diabetes, even so they're not going to, like, just pull it out of your bag and be like, Oh, I guess we should jam this center now, right? So does that ever concern you that you haven't shared that with other people? For that reason,

Aisha 35:15
it's funny, not funny. I had a situation where I was traveling and there was lots of activity, lots of different you know, our day was not a typical day, and I went to go tell my girlfriends. At that point, I was traveling a bunch of girls, and I was like, Hey, you see this bag here? I'm like, in here is I was going to tell them what was in the bag, because I carry it with me everywhere. They were so excited about where we were that they kind of like dismissed my introduction of the topic, and they got excited about something else, and then moving on with our day. And then a couple days later, I actually did need it, and they realized that they had an opportunity. Had they listened and let me explain? And again, I should have been more proactive about it, and that is going forward, I have actually sat down with my friends and gone over how to use all of the pieces that I carry

Scott Benner 36:16
with me. Gotcha, why do you think you're getting low frequently?

Aisha 36:20
Oh, adrenaline for some things, like, like, right now my I'm using a little bit less insulin than usual. A few months ago, it is like water. The settings are pretty much about the same. I don't know. It's just always been my entire 3132 but every years, it's never been predictable.

Scott Benner 36:45
Are you telling me that your needs change and before you notice they change, you have too much insulin because of settings,

Aisha 36:52
not necessarily because of settings, but because of life in general. I mean, you know this, like you can get already a list for something, and then your opportunity to eat whatever it was doesn't show up. And here's something new, also for you that you might not know. I don't know because I haven't told you yet. My meal times used to be incredibly difficult for me, and I started, finally introducing a Fresa into my meal times, and that has been amazing as well. Okay, it's nice and quick. It comes in. Like doctor said the other day, you know, it comes in, there's no tail. And that was, that's really the reason, where I had so many challenges, was that the tail on insulin is so long that

Scott Benner 37:40
it was getting you then, like, later after meals, yeah, okay, and

Aisha 37:44
so, like, with the first story that I told about, you know, it happening overnight. That's that tail that would just hang in there for hours after. I really liked when he was talking about, it was Dr Belvin, I

Scott Benner 37:58
think Blevins that had talked about a phrase, yeah, Dr Blevins.

Aisha 38:03
Of Blevins, Yep, yeah. He was saying that, you know, insulin has like a six hour length on it. And most people don't realize that. They think it has like a three or four, yeah, and this couple extra hours.

Scott Benner 38:16
I definitely think that's true. I think a lot gets commingled where, you know, back with, well, not back with, but people who have pumps that aren't being run by, you know, they're not at some sort of an A ID system. They don't have an algorithm running. So those people would shorten their insulin action time and their pumps so that they'd get more insulin the next time they bullish or something a couple hours after a meal. You know, it's not a terrible way to make to handle things. I've certainly had Arden's, and I think of it as a dummy setting almost the insulin action time on a regular pump. But I've had it set shorters that she'd get bigger boluses at times. But once you're using, I mean, any of these aid systems, I think you're gonna, what you're gonna see is that insulin lasts six hours in, you know, in most situations, I actually was just looking I have an email here from somebody about setting up another person to come in and talk about a Fresa. So I'm excited about that. Hopefully that can happen. He's a rep for the company, but he knows like a ton about it, and so I think he's trying to get the okay from the company to come on and speak on the podcast. So hopefully that'll happen, because I do hear more people talking about it recently, for certain,

Aisha 39:22
I love it. I have to say, I really love it, because it can come in, like he said, like within 15 minutes, whenever it starts acting, and then about 90 minutes to three hours, it's gone. And, I mean, it's gone, you're not dealing and I'd love the fact that he was saying about that you could take another capsule if you didn't cover the food because enough, because it would just be gone within 90 minutes, and it gave you a little bit more control over the food. And that was always my biggest you know, if I don't eat, I'm fine. My Settings are great. Eat, yeah, but as soon as I introduce food, it's always been a challenge.

Scott Benner 40:04
You think, you don't think you can go your whole life without eating. I've tried. I really have. I guess you could, but it would be a shorter life, right?

Aisha 40:12
Yeah, it would be, you know, I'd miss up on so many yummy things out there. You know, life is full of good stuff. And I

Scott Benner 40:19
should just imagine, you come on here and say, so I haven't been eating for two months. My blood sugars have been really terrific. I think I've got a couple more months left, but then, you know, anyway, I'm going out with a bang with these great, steady, stable blood sugars. Yeah, no. I mean, listen, it's hard to argue when you hear people talk about it like, the way they're on top of big meals, that they don't get low afterwards. They don't have to be concerned about it, like I you know, it's great. This is a weird question, and I could be barking up a completely wrong tree, but I'm gonna see if there's a connection here. If there's not, you'll tell me there isn't. Okay. You don't like telling people about your diabetes, right? And earlier, you said, I've been sleeping alone for 20 years. Yeah, are those two things connected?

Oh, no, no, no. All right, that's,

I just didn't know if you had trouble forming, like, personal relationships because of diabetes.

Aisha 41:08
No, no. I mean, in my past relationships, I've shared with the person I'm dating about, you know, type fun. Usually it's like, you know, when you get in. I'm not one of those people who like right from the first day, lays it all out in the line and says, Hey, you know, this is my whole life. Where do you

Scott Benner 41:27
think we should go to lunch? This is my glucagon. Uh oh, not like that. There you go. Yeah. Listen, buddy.

Aisha 41:37
Well, it is interesting, but people will say on that at the very beginning of a first date. Sometimes they just lay it all out there. Wait

Scott Benner 41:44
a minute, what's the best story that somebody's hit you with on a first date?

Aisha 41:47
Oh my gosh, no. I think it's like, it was funny. I went on a walking date one day, and, you know, like, we meet somebody to go for a walk, you know, get to know each other, literally, like, within the first five seconds, he already was saying, Look, I had a vasectomy. I can't have kids. So if you want kids, you know, you might as well call it quits. Now.

Scott Benner 42:07
How old were you when this happened? I need to know.

Unknown Speaker 42:09
Oh my gosh,

Scott Benner 42:10
I think I was probably 40. Yeah, were you? Were you thinking about kids when you were 40? By the way,

Aisha 42:15
I don't know if I was even thinking. I barely had time to think about whether or not I locked my car in the parking lot before I met this person. Yeah,

Scott Benner 42:25
it's hysterical. Dating is fun.

How quickly do you make the sounds coarse, but it's not but how quickly after meeting a man till you know if you would have sex with him or not? Does it happen fast, or does it take time? You

Aisha 42:39
asked me that question. Well, whether, no, whether or not I want to have sex with them or not, is, you know, that's kind of like based on sexuality, like I might want it, but I'm not going,

Scott Benner 42:53
Oh, I'm not saying, Oh no, no, no. I'm not saying you would. I'm saying, when's the moment when the light goes off and you go, Oh, I'm not doing this. Or I will.

Aisha 43:01
I don't know. I don't think I have tracked that. I think it's like, let's put this space that one who has been in the first 30 seconds right there. You were like, No thank you, because he didn't want to have kids. But it was just like, I didn't even much know his last name at that point, you know, and yeah,

Scott Benner 43:16
and he's Yeah, I hear what you're saying. Like, it, yeah, that's probably not a first date comment. I don't think it must be so hard to date when you're when you've got all that baggage, you know, like, you're like, I gotta let him know, and blah, blah, blah. And it's probably been a pressure for him in his life. In the past, he probably met somebody, fell in love with them, and then six months into it, they were like, you know, I like you. I can't wait to have kids. And he's like, uh, it which, you know what I mean, like, maybe I don't know, but I get it's ridiculous. I never, I hope

Aisha 43:47
I thought it was funny. I thought it was funny, yeah, but

Scott Benner 43:50
you, but you also kind of like, you ding them on points there too, right?

Aisha 43:55
Yeah, yeah. Sadly, but I did, I did finish the walk.

Scott Benner 44:01
Oh. The walk. You were like, I can burn 350 calories here if I just stay

Aisha 44:09
exactly. Get my steps in.

Scott Benner 44:11
I already did a Temp, Basal decrease for this. I gotta go on this walk.

Aisha 44:17
See, you know, like when you commit to it. It's gonna mess up if you don't do

Scott Benner 44:23
I'm either walking or whatever. I gotta do a jumping jack when I get back to my car. Okay, so it's ridiculous. What's it like dating with type one in general? Like, has it impeded it or has it? Have you had good experiences? Have you had all kinds?

Aisha 44:37
I think I've chosen wisely, so to speak, the gentleman that I have dated in the past like it does come up at a point that when there's a trust factor, you know, when, if I'm going to be spending time with somebody and I trust them with my time, you know, I'll probably see how they're going to handle it. Some people were like. Oh, no problem at all, you know, like it was nothing. And then others were a little, you know, not too crazy about it. And some just are other people that have thinking of one of my girlfriends, she was like, when I told her, she's like, Okay, anything I need to know. She's like, okay, like she was, didn't have any questions. So I think some people are incredibly inquisitive, and then others just don't know what to ask.

Scott Benner 45:27
Have you seen any similarities between people who have responded poorly, like, Is there, like, a trait about them that you've noticed throughout or no,

Aisha 45:38
not enough to pick them out? I guess now that's a good point. Yeah, I was just

Scott Benner 45:42
wondering if something popped into your head like, Oh, wow. These guys all seem like, you know, whatever?

Aisha 45:47
I don't, I don't think there was too much of a commonality with that, but that's a good thing to I'll put that on my radar for the next one to see. Yeah, I

Scott Benner 45:58
just wonder, yeah, like, they all have brown hair or something. Yeah,

Aisha 46:02
yeah, you know that that could be the trait. I

Scott Benner 46:06
don't, yeah, obviously. Don't mean anything that simple, but yeah, I just, I wasn't certain. I've heard some stories, you know, like both online and on the podcast, and just one recently, it was online where the person was like, the guy came at her and was just like, I can't believe you want me to, like, build a life with you when you're sick or something like that. And I was like, oh my god, like, Jesus, take the time to understand first of all. Then once you understand, if it seems like it's too much for you, it's too much for you that you know, like you say, I don't think I can handle this. Like, not there's something wrong with you, and so I gotta go now, like, I mean, I guess you catch a break when you realize that that's the person you're with. You know what I mean? But still, terrible, terrible way to say something.

Aisha 46:53
Yeah, the world just followed different people, and some of them get it, and some of them don't. And,

Scott Benner 46:59
well, that's for sure.

Aisha 47:02
Just gotta keep choosing. Well, you know,

Scott Benner 47:04
okay, so tell me you called yourself like a closeted type one in your note. Yes, I did. Okay. Is that ever gonna change? Do you think?

Aisha 47:12
I don't know. I think that's why I wanted to do this today too. Was, you know, I've spent 32 years not talking about it and not I think maybe I don't know that if it necessarily felt like I wear a banner or wear a hat or get out, be walking around with big arrow on my head or something that says, hey, you know, coming out here I am, you know, type one.

Scott Benner 47:36
Is there a hat? I didn't know there was a hat.

Aisha 47:40
No, I don't know I should get one, right? But it's, you know, what it is, is that I just don't want people to see because, and again, it just keeps happening everywhere I go, that like, that's all people see. And they don't realize that, yes, I can jump out of an airplane, and yes, I can ride ride motorcycle, and I can do so many things that, you know I mean, and yes, at times I'm also thinking about all the things I have to do to keep myself in a good spot to be able to do those things. Okay. I think the thing that gets me most frustrated is that you still want to come out to the world like and have this really great environment for all type ones to be able to live their fullest life, but the reality of it is, and I don't, and I don't mean true reality, but it's going to take a long time for people to change and for workplaces to change. I don't want anyone to limit me about what I can do, and I think that's the thing that frustrates me and concerns me the most is that someone's going to say, oh, you can't do this. Yeah.

Scott Benner 48:44
Is this cultural? Is this about where you live to some degree or No, I don't think so. Okay, have you lived in different areas? I

Aisha 48:54
did move a bunch of the places growing up so that that could be some of it is that I was the new kid many a time, but I don't think it's really environment.

Scott Benner 49:05
It's not like, you're somewhere where they're like, We you got the sugars. And it just is what it is like, you're you're not like, because I've heard people talk like that, like, Oh, you got the sugars. Bad luck on you, right? Yeah. You know what I mean? Like, well,

Aisha 49:18
and you know what, when I was telling you in the early days, when I was open about it, and, you know, people would make some terrible errors and judgment on how to, you know, think about me or treat me. I had a fellow person at my church where I went that was also type one, but was a closet type one? And they kind of took me aside and they said, you know, you really don't want to be telling anyone about this, because that's all they're going to see. It's really better just to keep quiet to yourself. And at that point, this is at the same time that everything else was happening. So it kind of like, oh, go. Lot, and I gave weight to what they were saying, because it was life was easier afterwards, you know,

Scott Benner 50:08
you know, it's funny, though, but listen, I'm not in your position, and obviously I think you should do whatever makes you comfortable and happy. But then I also think that it's such an easy way to weed out assholes, you know, maybe you don't have to get to know somebody for six months before you realize they want to have a baby. And you've already had, like, you know, you're, what do they do? They snipped a little like, vas deferens there, or something like that, right? Wait, is that? Is that right? Or am I just making up penis parts? Now, hold on a second. That's right, isn't it?

Unknown Speaker 50:39
Oh, God. How do

Aisha 50:41
I say tube tied? Is that what you that's a

Scott Benner 50:43
girl, the guys. Yeah. How do you clip a man? Think it'll come up with an answer, nope. That's, I don't mean his hair. Hold on a second. Okay, so say I again, can't have a baby. Also, I know men can't have baby. I think it's clear, yes, vasectomy is a highly effective preventative, if you were asking somebody else, yeah, no, that's it. How do they do it? It's, it's, I know it's just gonna end up saying vas deferens, and I'm gonna be like, I knew it. That sounds right. Incision, the doctor makes one or two small cuts on the scrotum to access the vas deferens. Whoo. Look at me paying attention to eighth grade biology. The vas deferens on each side is cut. A small section is removed, the ends are then sealed by tying them off. This is also how they get rid of an old sink in your basement, cut the pipes and cap them off, and then you're on your way. But anyway, like, like, terrible analogy, I'm doing my best ever so, so you've got this, like, you know, like, it's almost like a, like, a built in bull detector, and then you get to say something, and people say something crazy, and you go, Okay, well, not them, but at the same time, I am taking your point very seriously about, like, it's just a lot of pressure always having people tell you, give me that cake. You can't do that. You know, are you sure? Like, all that crap that comes with it has got to be overwhelming. So I take, I mean, I see both sides of the argument, actually, yeah.

Aisha 52:17
And I think, I mean, I think there's benefits in both sides. I mean, it's great when you're in a community where everybody knows and you know, but like, and I have one friend, I love her dearly, but like, she knows, and she always is looking at me like, are you okay?

Scott Benner 52:31
Are you okay?

Aisha 52:32
Do you need to do that? And I'm like, Oh my gosh, freaking her

Scott Benner 52:36
out. Yeah. Arden had this girl when she was a little kid. She was like, in second and third grade, there was this girl she was around, and she came to us as, like, a second grader, and said, You have to stop this girl in my class. She's babying me because, yeah, of the diabetes. And then that went on, like, through the end of second grade. We couldn't get it to stop. It would happen to third grade. And finally, we had to, like, be more forceful about it. But yes, she was just treating Arden like a baby because of it. It's got to be even more maddening when you're an adult, I would imagine,

Aisha 53:08
well, and it's, you know, you love the concern you love that they're looking out for you. But at the same time, it's like, you know, not every, every time I sneeze, or every time I, you know, hiccup, you know, my sugar is going up or down. You know I mean

Scott Benner 53:23
something? No, I just, I sneezed. Everything's fine. Thank you. Oh, I take your point. All right. What have we not talked about that we should have? One of

Aisha 53:30
the things I was thinking about was that what I love again about your show is that there are variables in diabetes and the variables in the people who are managing diabetes, because we're not just one size fits all. You bring so much content to us all so that we can and it's hard to keep up with your content, not for nothing. Thank you. I used to have to drive up and down the East Coast just to listen to everything and keep up with it.

Scott Benner 53:56
Are you saying, wait a minute? Are you saying it's possible I'm the reason for this bad air quality, what's going on? People are just driving around listening. I go and keep talking. I'm sorry. I apologize. No, no, no, I'm

Aisha 54:09
laughing. I'm laughing because that's funny. But I did. I went down in 2019 because I was such a pivotal year. You think about it like for everybody but 2019 I was going down to Florida. So I went up and down the coast, and I finally got to get caught up. That was the first year I started listening to you, and I got caught up. And then then we had the pandemic, so that could put a little hurt, you know, cut my driving short for a little bit. I just had another road trip recently, and I got a little more caught up, but you're hard to keep up with.

Scott Benner 54:43
My idea is kind of wrapped around what you just said, and it made me feel good the way you spoke about it, because I just think that everything can't be for everybody. And if you put out an episode a week, and that episode this week is about, like, I don't know the. Miss Iowa, right? Then everybody that looks at it and goes, I don't like the Paget system now, they're they don't listen, right and, and what if, in the middle of it, Miss Iowa says something that's awesome. And by the way, if you noticed, if you heard that one, because I'm thinking of it, because it's recent, that girl was really on point, like she was really just great to talk to. So if the next one is it just says glucagon, you're like, I don't know what that is, or I don't care, or I don't need that. You don't listen. But if it's you and you just come on and tell your story, then maybe people will hear and go, oh yeah, I should be carrying glucagon, because I'm going to tell you something. I just left the Arden at a different college. And previous to this, she had been in a setting where she had her own bedroom, but there were people in the apartment, and they could come and go out of each other's bedrooms, if need be. All those people knew how to use her glucagon. She gets to a new setting where she's in an apartment with three people, but everyone's bedrooms automatically lock when they close the door. And the last thing I said to Arden before I left, was jivo kypo Pen next to the bed in your purse. It's with you. Constantly she goes. I always have with me. I'm like, I know, but constantly I said, I know you always have it with you, but next to the bed as well. I want a different one next to the bed. And you don't have to be having a seizure to use it, right? Okay, like, I'm, like, I said, if you get into that spot, like you just described, like, you know, I'm in the kitchen, actually, you said I knew it was coming, and I knew I couldn't stop it. What? What told you that, like, what? What was your experience that made you feel like, Uh oh, this isn't being stopped by a box of juice.

Aisha 56:36
I think it was just the the numbers that I saw in the CGM for fun, they were just going down at, like, a double arrow down kind of thing. And then just the way you feel a lot of times. You know, we all experience hypo in different ways, like through our vision, or we feel nervous or itchy or or whatever, but it is just, yeah, I knew. And, like I said, the same thing for Arden would be like, the good thing is that you know it works, and you know that it's not going to make you feel like crap after it's you know it's okay to do it, yeah. So

Scott Benner 57:09
you're having that moment, like in a movie, when someone's like, going to get hit by a train, and they don't even bother trying to move, because they know I can't get out of the way, though. Yeah. So you're like, it's happening. Boom, I'm going to hit myself, use the back semi right, bang. I know this is happening. And that's what I tried to tell her. I was like, Look, I'm not saying just run around and if you drift under 70 and, you know, you start feeling dizzy at some point, like, that's not the time. Probably, if it's crashing, if you're just like, I can't get ahead of this. If you're disoriented, if anything happens like that, just do it. And she was like, Yeah, okay. Like, I don't know how it's gonna work out, but I wanted her to have that knowledge. I also have had the experience I've talked about on the show before, speaking in front of a room of maybe 400 people and bringing up glucagon and watching most of them just go, I don't even know what you're talking about. So my bigger point was, is that if I just make an episode that's called glucagon, and why it's so darn important. And then have some like, buttoned up, Doctor, come on. And then read through the bullet points of why glucagon is just so darn important. Let me tell you what I know for sure because I make a popular podcast. No one will listen to it. No one, right? Okay, they'll skip it, or if they click on it the first time that you know, the first 30 seconds when the doctor's like, you know, I don't know, it sounds like they're reading from a textbook. People are they're done. They're just shut it off. And so you know that to me, like, you put out a lot of content, you cover a lot of things, you mix conversation with information so that people will make it to it. Just do your best to put it out there as best you can, and you know, and it, hope, it finds the people that can find it valuable. And if you should say something, it's not valuable, I listen. I believe in adults. Okay? I believe an adult can listen to something and say, I don't even think that's right, or that's not for me, or I know what he's talking about, but I would do it like this, like no one's under I just I had had people in the past say, Well, I don't do it exactly the way you do it, but the podcast does help me. And I always think, do you think I'm under the impression that you're, like, following this like a road map? Like, that's interesting. You know what I mean? So I'm just talking like, here's my experiences. Like, you know, here's, I found some other people. Here's their experiences. Do what you want with it. You know what I mean? Like, you're an adult, you can figure it out. That's all but, but I appreciate that. That's good. Yeah, you're like, why are you talking like this? Because you don't know my life,

Aisha 59:35
but we hear a lot of it through the podcast. But something else I just thought of too, that was interesting. When I was getting ready, I was like, we spent two hours with our doctor a year, two hours, and we spent 8758 hours managing

Unknown Speaker 59:52
type one.

Aisha 59:54
Totally, yeah, you know the 32nd time that they spend with. At your staff, it's like nothing compared to, you know. So like, again, your content really does sometimes, you know, doctors never going to go into all the details of explaining why you know it's important to carry food on or why it's important to administer yourself. Yeah,

Scott Benner 1:00:16
I had a person tell me recently, like Scott, even if you were wrong, every I don't know, once out of every five times you opened your mouth, he goes, you're still doing way better than the doctors I've had my entire life. And I was like, thank you. It feels like if I took you, if you'd never seen professional hockey before. And I was like, Can you skate? And you're like, I can stand on skates and move a little bit. I was like, that's great. Come here. And then I pulled you aside, handed you a stick, put a helmet on your head, and said, That's the Philadelphia Flyers and Montreal Canadians, and they need help. Puck hit it into the net. You're on that side, and then I shoved you out on the ice. I think that's what it feels like to have diabetes. You know what I mean? For a great many people like you just said, like, there's, there's so much information you need, but you get a tiny little percentage of what you actually need. And then you just throw in the lions and, like, just go do it now. And you know you're gonna get out there. You're gonna pick your head up, some guy named Claude is gonna skate right through. It's gonna knock you on your ass, and you're gonna be like, I thought I just had to skate towards the black thing and hit it. It just, it's not enough information and time, yeah, even if doctors had like, even if they had a way to give you all the information in a way that you would jive with and by the way, some people don't like to read, some people don't like to talk, like everybody learns in a different way on top of everything else. But let's just say, your doctors got all the info. They know how to talk to you. They still don't have the time, and you don't have the time while you're with them. And what the podcast allows you to do is to pop it on when it's convenient for you and when you're kind of emotionally ready for it, and when you have enough, I would think, like intellectual space to accept this new information and try to think about it. That's all I mean, it's an imperfect system, but so far, I don't see a better way to do it. And if there is like, I think somebody should go like, if somebody listings right now is like, Scott, a podcast is a terrible way to do this. I know a better way. I think you should be doing it like, go do it right now. You know what I mean, go help people. So anyway, good. Well, you were gonna say something. I talked over you. I apologize. I was

Aisha 1:02:19
gonna say like, I really do you know, not just that I like the back test, but I like the fact that, like, you have them, you know, diabetes variables and the bold beginnings and, like, we can go back and listen to them over and over, and it's kind of like what we do to refine how we take care of ourselves is to go back and say, Okay, what did I miss the first time? Or, Oh, yeah. Now this is, you know, second nature to me, and I know to do this, that and the other thing. And, you know, how about adding this into it? Now, because we can only do so much that, for you can only do so much. Each time you try something new, you can only do what you can do,

Scott Benner 1:02:57
right? I also, I'll tell you, I It's gonna sound odd, maybe, but I have a huge amount of respect for the all the sponsors, for sponsoring the podcast, too, because you just brought up some series, right? Those series are ideas, and then they're thought about for a year, and then, you know, you think, Okay, I think this is the pacing for it. I think these are the topics we want to hit. Who do I want to talk to about that? Like, where would that work best? When can we get that scheduled, etc, and so on. And then by the time it comes out, it's been in my head for a couple of years before that happens, or up on this white like, I'm looking at a whiteboard right now that has 122, series. Well, three, but two series on it that? Well, there's four. I have four series ideas in front of me, right? And two of them are getting closer. Let me start over. There are five series ideas in front of me on this whiteboard. One of them I've just started doing. It took me maybe a year to get it rolling. The other two are getting closer. And there's two more that I bet I don't do until 2026 No kidding, awesome, right? Awesome. And I know how they fit into the bigger conversation, but the bigger conversation has to happen before you put them in. And that takes time, and it takes a lot of effort, and I'm telling you that without all that, without the support of the sponsors. Like, if this isn't my job. This is my notebook where I go, Oh, wouldn't it be nice to do this? And that never happens, because if it's not your job, you can't put enough time into it. It takes an immense amount of time just to get it. As far as I've been able to get it. And if you know, if you wanted it to be even more, you'd say, Oh, well, you know, well, if we hired a staff. I can't afford to do that, but let's say I could hire, I could afford to hire a staff, then what would turn into is like seven people's opinions, and one people would be like, you can't say that, and one parent, and it would just, it'd be like a paralysis by analysis situation. It would just sit perfectly still. It would never happen. And instead, I think just you. Think it through, get it straight as best as I can, put it out. Hopefully people get something out of it and keep going and make more. And to your point about there being so much, I gotta be honest with you, like I probably would like to make a little less than I make at the moment, I'm gonna use the word scourge twice in one episode. Once was a joke, but this, at the moment, is the scourge of social media. Like, if I take my foot off the gas, you can't get back in the game again. It's like a NASCAR race, like you drop out of the top five, you're done, and that's just what happens. So anyway, I put out a lot of content so that people always have something there if they want it. That's pretty much the whole thing. I appreciate that you like it.

Aisha 1:05:40
I think it's great content. That's the thing, like you were saying about your planning board. And I'm kind of like a planner by nature. And things don't happen overnight. You don't come up with a series just, you know, oh, okay, let's go shoot it now and get it up on air next week. It's there's a lot of that goes on behind the scenes about it. And I love that you're thinking about that, that it's not just stagnant content. You're branching out in ways that it's not the same old, same old, with diabetes education.

Scott Benner 1:06:14
There are some people who put out, like, some of the like, from what I understand, some of the most coherent, like, 20 minute videos that explain things to you, right? Like, and explain to you how a system works, or something like that. And I've heard from people like, they'll tell me all the time, like, you should listen to that it's so good. And I'm like, I don't have time to listen to anything. But that's not neither here nor there. What I'm saying is the people I trust say the contents good, right? And they'll send me a link, and I look and I go, I never, I never get to it. But you look and you're like, This has been down. Downloaded 200 times, where it's been up for three years and it's been listened to 800 times. I'm like, there are 185 million people with type one diabetes, like four this thing, they found a way to get up to 400 people. It's, it's statistically. I mean, it helps the 400 people. But you're not, you're not spreading the word about this thing that you think is very important. It has to be, I don't know, like, I don't know why. I know what's entertaining, okay, but I do. And like, and for a great many people like, I cross boundaries that are gender, race, country, religion. Like, I have a mix of all of different kinds of people listening, and not everybody listen. Some people hate me. Some people tolerate me, like whatever. Who cares, as long as they're getting something out of it. I think about all the GLP content that's gone up in the last year. Like, if you think that, like 12 months ago, I was like, GLP is popular. I'll make GLP content. The word GLP explainer has been on my board for three years. Three years it's been up there. GLP explainer. I'm looking at it right now. I didn't even know what that meant when I wrote it down. I just thought, I think people need to know what glps are. GLP explainer. And then time moves on and it gets a little more out into the world, and you're like, all right, I'm seeing people using it. Now, let's get some doctors on find out what they think. You know, pay attention on the back end of what you're seeing. Then start seeing people like, popping up. And now somebody came to me the other day and said, there are so many people popping up in the Facebook group who are type one and using glps, they're really like, coming out now about it. They're not like, I just started a lot of people like, Oh, I've been doing that for two years, or I've been doing that, or I took the pill for five years, and I just went to the but, so what you're doing is, what I think I'm doing is creating a situation where people can feel like it's okay for me to talk about this. I've been taking rebels since it came out, or whatever. I just moved to Manjaro, and here's my you know, like, it's okay to tell people about that, right? You know what I mean? Like, I know, like, when I have that guy on who's Lada and suddenly isn't using any insulin, right? And I'm like, Oh God, I am. There is going to be a small portion of people that are just going to hate that this happened, that he said this out loud, but I think bigger picture, it's important for people to hear I think people can figure out that GLP medication doesn't magically make your insulin needs go away. This guy's having a very unique experience, but it's worth looking into. You know what I mean?

Aisha 1:09:15
I'm gonna throw something at you here because I started on it 10 days ago, and I have to tell you my time and range when it's beautiful, I have not been able, like, my normal average BG was getting higher and higher. So, like, this last year, like, everything was getting more challenging to deal with. And finally, we were able to start the COVID, like, 10 days ago, but literally, like just being able to see the stability and not it just, I don't know how it does it really, I've listened to all your podcasts, and I've listened to the other podcasts that you've had that have talked more about in detail, but it's just amazing what it can do.

Scott Benner 1:09:57
So you've had point two, five, we go V. Two times so far. Yes, you see where my brain goes to for you is, if this lowers your insulin needs, maybe you're not going to have so many lows in the future. And wouldn't that be true?

Aisha 1:10:12
Right? Is that one that's exactly it is that it's it's reduced the highs and the lows, and it's just like, the numbers are amazing. I just ran my report, and I was like, Yeah, I was getting frustrated because my numbers were pushing up. And I'm on loop, and I have a CGM, and I do everything, you know, I put an exercise ratio when I'm going to exercise, and I have a phrase, you know, I have all these tools available, and no matter, but it wasn't working. And I thought for like, about a year to get onto rogovie, and I finally just got it. And literally, like overnight, like my average BG is, like 111 106 which I had never seen. That my biggest difficulty with standard deviation. I know you talked about that in the past, but it's like that was a hard one for me, that they wanted to be below 40. I barely get it below 50 when I was trying, you know, yeah.

Scott Benner 1:11:13
And now this one little thing is going to make such a big difference. How did you get we go video. Did you qualify on BMI?

Aisha 1:11:20
I did so I have been fighting with my weight for a while. My originally, my doctor filled out the paperwork incorrectly, so it looked like I hadn't lost any weight on it, but I hadn't even started it. We went back around another like year later, and we put it in again, and this time, she filled it up correctly, and somehow it went through. And I don't know if it's due to BMI. I'm only five foot, so it doesn't take much to

Scott Benner 1:11:51
push your BMI, yeah, I hear you. Okay. Oh, that. Let's listen. That's awesome. I'm seeing people getting it through some like, good, like, really good insurance policies are starting to cover for just like dual diagnosis. Like, people are like, look, I have type one diabetes, but I also have insulin resistance. You can call that whatever you want. In your little code, they're going to call it type two diabetes, but I have insulin resistance. My doctor says, I do. I take this stuff. My need for insulin goes down, and people are getting it covered that way. I can imagine that you're going to need some more FDA, you know, approvals, obviously, but all these other little things that I think people are seeing help with when their inflammation is lowering and they're they're using these glps. I mean, one day you'll probably see it, you know, you'll probably be able to, I'm guessing, prescribe it for PCOS, for example, you know, you know, so, like, wait and see. Like, who can it's awesome, right? I mean, you heard that one person story, but You heard the lady come on and talk about her kid, like, bipolar symptoms going down on it, on a GLP medication. Like, Jesus. Like, yeah,

Aisha 1:12:53
yeah, there's so much. I think there's more to it than it's not just about the weight, and it's not just about but, I mean, if you think about it, your sugars are in control, and your body's not spending energy on trying to maintain its equilibrium. It's able to put energy elsewhere. So I don't know all about the glps, like all the magic of it all, but there is something there that definitely has made a difference already. Just, you know, yeah, just in keeping it stable, listen,

Scott Benner 1:13:25
I listen to people, but I don't know. Like, I'm not, you've listened for a while. I'm not a genius. You know what I mean? Like, I don't, I don't know, but what I know, what I see, I'm fairly confident telling you that, you know, five years from now, 10 years from now, you're going to see this stuff used for a lot of different stuff and good and somebody's got to be out ahead of this saying, I think we should look at this. And I think that's what I'm doing. I'm just like, look, here's people's stories. Like, pay attention. You know what I mean? Because this lady's talked about it helping with their kids bipolar, and this person talked about it helping with their RA and this person talked about it helping with their PCOS. And a lot of people are talking about them helping with their insulin resistance, and now they're using less insulin, and they're having fewer lows because of that, and fewer excursions after food and and the weight loss. The lady I talked to yesterday, I think she lost 70 pounds. Like, get out of here, you know what I mean? Like, changed her life. I've lost almost 50 pounds. It's changed my life. It changed my digestion. My digestion allows me now to, like, absorb iron I used to have to get iron infusions. I don't have to get iron infusions anymore. Like, let people find out what's, you know, what is, and then we'll all work it out together. Like, I'm not gonna, if you wait for a pharma company to say, oh, it helps with PCOS, they're gonna, like, they're not gonna say that. They're gonna say, oh, there's no money there for that. Like, you need people to, like, say, this is what's happening for me. And so that the companies almost get pushed into going, like, alright. I mean, if it's helping people this, maybe we should run a study and figure it out, and, you know, maybe get some FDA approval and learn how to dose it better. And, you know, everything else that'll come with it. I don't mind. Being on the the edge of the wave sometimes, like, it's not comfortable, because people come at you. They're like, you know, they they're more comfortable with what was I've taken it for like, it seems silly now, but people have treated me like garbage for saying that people should think about pre ball listening like I used to get crushed. I used to get crushed for that, right? And then I said, I don't care, you know, how you eat. I just want you to understand how to use insulin. I got crushed by that, like, for fringe, like, some kind of more fringe eating styles, or, you know, call me an insulin pusher. Yeah, I'm like, I'm just, I'm just saying, like, learn how much insulin you need and use it. And then, you know, you say that for a couple years, and that stops becoming a thing people argue about. And there's other things in there too, like you're not specific enough when you talk. You should be more clear about that. It's a podcast. And now I got, I got hit really hard last year for the Grand Rounds series, don't tell you know you I don't like the way you're talking to doctors. Then I put out the cold wind series, don't let people talk about what they see at their jobs. I'm like, Oh my God. Like you guys are all so scared of everything, then the GLP comes out. Glps aren't for people with type one. Scott, you're an idiot. I'm like, Oh my God. I'm like, Okay, I'm gonna keep doing what I think is right, and you don't have to listen. But we need to keep knowing what's going on, and then we can all decide on our own. Like, I don't need a person like you made the point earlier. There are all kinds of different people with diabetes handling it all kinds of different ways. I'm not making a podcast for one of those people. It's for everybody. You don't like it, don't listen to it, but if it's helping you, great. Like, I'm glad. Thank you. I appreciate you listening. You listening. You know what I mean, like, I'm glad it's helping you. I live long and prosper, whatever. Aisha, I really just appreciate this. Thank you. I mean, just a terrific conversation, and I talked a little too much today, but I appreciate you being okay with that. Thank

Aisha 1:16:56
you for having me on and you know, allowing me to share,

Scott Benner 1:16:59
well, it's a pleasure. It really is. I It's a pleasure every time somebody comes on and and is kind enough to open up like this, and especially somebody like you who's not accustomed to talking about this with other people. So you went from not telling anybody to telling a lot of people all at once. So on,

Aisha 1:17:14
the whole world, it's amazing. Pretty brave. What

Scott Benner 1:17:17
do you want to call this episode?

Aisha 1:17:19
I don't know, we didn't talk about things. I think I was, it was funny. I was so I do pet sitting on the side too. I do a lot of things. I do line dancing. I do pet sitting. And right now I'm pet sitting The Breakfast Club. And I was laughing about that this morning, but not really relevant.

Scott Benner 1:17:37
Hey, is there a line dance song that's really popular.

Aisha 1:17:41
Oh my gosh. There's some at the bar that's like theme, and then there's shivers. There's all kinds

Scott Benner 1:17:47
of dances out there. I

need you. I need you to say one of them so we can make it the title, though. You know what I'm saying. I know I put me

Aisha 1:17:55
on the spot. I do terrible on game shows that. I will tell you that. All right,

Scott Benner 1:17:59
I'm gonna get a list of line dance socks,

boot, scootin, boogie, achy, Breaky Heart.

Copper head, road, watermelon, crawl. Good time. Country Girl, cha, cha, slide, Oh, these are more pop rock, wobble,

Unknown Speaker 1:18:15
oh,

Aisha 1:18:15
trust fall. Trust fall. Oh, cuz, yeah, all right. Good one. Trust fall.

Scott Benner 1:18:20
Is it possible that that's been an episode already? Let's I'll double check this for

Aisha 1:18:25
you. Now could be I think it was now that I think about it. Let's

Scott Benner 1:18:29
find out. Hold on a second. Trust Issues. Trust will happen. Helmsley, charitable trust, you are clear. Trustful, it is congratulations. Excellent. I

Aisha 1:18:40
love it. Thank you. You're welcome. Hold on one

Scott Benner 1:18:50
second. Sarah's story so genuinely encapsulates the experiences that so many caregivers go through on a daily basis. Our Juicebox community knows the importance of caregiver support so intimately, and Sarah's story is just a great example of what caregivers go through on a daily basis. To learn more about the Medtronic champion community and to find helpful resources and tips for caregivers and families, visit Medtronic diabetes.com/parents caregivers. A huge thank you to one of today's sponsors, gevok glucagon. Find out more about chief Oak hypop, 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, if you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Thinking about getting an algorithm pump don't know where to be. Again, Juicebox podcast.com up in the menu, click on algorithm pumping, and you're going to get a long list of a lot of episodes that will help you to understand better Juicebox podcast.com Find algorithm pumping. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com. You.

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