#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.
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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.
Please support the sponsors
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#1390 A Juicebox Christmas Poem
Merry Christmas to All!
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+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
COMING SOON
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The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
#1389 Spirit of 76
Terry has seen some things in his 76 years.
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+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.
I'm speaking with Terry today. He's had type one diabetes for 50 years, and he's seen a lot about diabetes management come and go. He was diagnosed at 26 years old. He's 76 today, and his father also had type one diabetes. 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 health care plan or becoming bold with insulin you don't
Speaker 1 0:40
forget
Scott Benner 0:45
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. 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.
The episode you're about to enjoy was brought to you by Dexcom, the Dexcom g7 the same CGM that my daughter wears. You can learn more and get started today at my link, dexcom.com/juice, box. This episode of The Juicebox Podcast is sponsored by touched by type one. This is my favorite diabetes organization, and I'm just asking you to check them out at touch by type one.org. On Facebook and Instagram.
Terry 1:59
Hi. My name is Terry Wheelan, and I'm a type one diabetic. In June of this coming year, it'll be 50 years, and so I think that's a significant accomplishment, considering awesome, but I've got quite a quite a track record of experiences with type one all the way through the technology developments for over the years. Yeah, and I can talk about that forever, but I'll, I'll let you kind of chime in. Scott, how old were you when you were diagnosed? I was about 26 years old. Is
Scott Benner 2:38
this you telling me, Tara, you're 76 Yes. Wow, that's crazy.
Terry 2:42
Hey, good with the numbers?
Scott Benner 2:44
Well, yeah, wait, do you see? Do you see all the things I'm great at, while we're talking simple math is only one of them. So you're in your 20 Are you married by the time you're diagnosed? I
Terry 2:55
was, in fact, I was just recently married and had a less than a year old son, wow.
Scott Benner 3:03
Okay, so you recently married, had a new child. Was there any diabetes in your family?
Terry 3:09
There was my father had it. He got it at age 50, type one. And he was a he was a doctor. What kind of physician, pathologist? And he had his his own lab. It was in the Midwest, here in Iowa. I'm currently in Nebraska, so I had to drive from here, from Omaha to Cedar Rapids, Iowa, and that's about back then, 50 years ago. 55 was the speed limit, so that was about a five hour drive instead of a four hour drive like it is today, at a higher speed limit. And
Scott Benner 3:49
Terry people don't know that's a five hour drive with air rushing in through the doors and crazy noise and fighting with the car. Yeah,
Terry 3:57
exactly, exactly. And shocks were very good either banging
Scott Benner 4:03
around hard those hard rubber tires that not, not all the way back to hard rubber, but they still weren't as everything about driving sucked in the past. So much better.
Terry 4:12
That was not, it was not fun, but having a newborn baby driving all the way back there. Now I went back for one reason, and that was to have him in his laboratory, which he had a private lab, is to find out what was going on with my blood sugar. Because I had gone on a diet, and I was trying to lose about 20 pounds. Not that I was overweight, but I wanted to lose about 20 pounds. Well, I was on the diet, and I started losing weight, and of course, I was going to the bathroom all the time. I was always thirsty, hungry. I mean, I'm basically starving to death, as you well know what the symptoms are. From that standpoint, I. Knew that after a period of time, I started cheating on the diet, as we all do, and I was still losing weight. So then the red flag went off in my head, something is seriously wrong here. So I wanted to go back and get a blood test. At that
Scott Benner 5:16
point in your life, how long had your dad had type one?
Terry 5:20
He'd had it for about two or five, six years.
Scott Benner 5:24
You were maybe a college or gone already before he was diagnosed.
Terry 5:29
Yes, I was in college when he was diagnosed. Exactly right. And so anyway, we drove back and he tested, had me do a glucose tolerance test back then. Why? Why they would do that with a suspected type one diabetic. I don't know, because you drink a real sugary drink in order to test that, but anyway, I came back with a blood sugar close to 800 Okay, so why I wasn't semi comb toast at that point? I don't know. Now, he was kind of a hands off kind of dad, and he was not a very good diabetic himself. A lot of doctors aren't that are type ones. There's a few exceptions with the decoy, the doctors are pretty good. He told me that when I go back, my five hour drive back with a baby and a new baby and a wife that I should find a doctor and get treated for type one diabetes instead of giving me a shot of insulin, which she could have done very easily. He didn't. I don't know why. To this day, I can't answer that he's long since passed, I was driving back in a semi com So state, as I recall, I know I had to stop at every rest stop along the way, on the way back to because of the frequent urination and the thirst. But anyway, I made it back, and at that particular time it was urine test strips, the needle, the disposable needles had just come out probably six to eight months after I was diagnosed. I don't know the exact date, but somewhere around there. So prior to that, he showed me how to boil needles in a metal pan. And of course, that just all you're doing is taking the needle and banging it against the side of the metal pan to dull it a little bit. So it felt even worse when you tried to do it dull and clean. Yeah, dull and clean, that's for sure. And it was, you know, those disposable syringes when they came out was great. And then they actually had blood strips that you could prick your finger with, which I thought was really a lot of fun. So now, now I had two ways to penetrate my skin and cause pain. Yeah, and I thought this was maybe not something I'm really gonna like going forward,
Scott Benner 8:03
right, right? It might seem too that if he wasn't great at managing for himself, and listen, I mean, 50 years ago, you're describing what diabetes was. 50 years ago, there wasn't a ton that you can really do for yourself. You follow the rules. So even if he was doing that, I'm imagining he might have looked at you and thought, I don't really even know what to do for him, like he might not have even have known what to do for himself. You know what I mean, he did.
Terry 8:26
He didn't. He wound up he was, you know, I told you, a pathologist, and he did autopsies for small hospitals around where he lived. So he was always driving different places on top of trying to run his lab, he wound up in the ditch two to three times a month. He got so low he semi passed out. I don't know why he didn't kill himself trying to drive around in that condition, but you know, he wasn't good about testing. And he'd take a shot in the morning. Think he was going to be good for the day. Well, back then, the insulin that you would use was beef, pork insulin. They didn't have any recumbent like we do today, didn't have long acting or short acting or anything. It was just beef, pork insulin. Well, you know, to fill a vial of insulin like you have today, it would take a pile of pagan cow pancreases about two and a half feet tall and about three feet in diameter just to make one vial, to make a little one vial. Yeah. So it was very, very unstable when I used it, because I had no other choice, I used my thigh to give myself a shot. And if you'd look at me and look like I went to a golf range and got hit with 100 golf balls, because it would lead an indentation that looked about. Size and would attribute about the size of a golf ball. Now, since I got off of that, not using it, that went away, which was nice. It was not a very stable insulin. It kept you alive. Basically, that was about it, yeah. And of course, the blood, the blood test strips back then were about as reliable as the urine strips were. You didn't get a real good sense early on with some of those, like we do today, they weren't as sensitive to the chemical makeup of the strip to read it correctly.
Scott Benner 10:34
What were your goals? Like, what were you trying to accomplish day to day? And what were you trying to see that you were doing at doctors visits. You know what I mean, like, what were your hopes for your outcomes? Dexcom g7 offers an easier way to manage diabetes without finger sticks. It is a simple CGM system that delivers real time glucose numbers to your smartphone, your smart watch, and it effortlessly allows you to see your glucose levels and where they're headed. My daughter is wearing a Dexcom g7 right now, and I can't recommend it enough, whether you have commercial insurance, Medicare coverage or no CGM coverage at all, Dexcom can help you. Go to my link, dexcom.com/juicebox, and look for that button that says, Get a free benefits check. That'll get you going with Dexcom when you're there, check out the Dexcom clarity app or the follow. Did you know that people can follow your Dexcom up to 10 people can follow you. Right now I'm following my daughter, but my wife is also following her. Her roommates at school are following her, so I guess Arden's being followed right now by five people who are concerned for her health and welfare, and you can do the same thing, school nurses, your neighbor, people in your family, everyone can have access to that information if you want them to have it, or if you're an adult and you don't want anyone to know, you don't have to share with anybody. It's completely up to you. Dexcom.com/juice, box. Links in the show notes, links at Juicebox podcast.com, and when you use my link to learn about Dexcom, you're supporting the podcast.
Terry 12:09
I can answer that. First of all, you didn't know that you wanted to go to an endocrinologist. You know that diabetic type one you went to your family doctor, a GP. That's what they called them back then, general practitioner. Now they're internal medicine doctors, and nothing against them. They they learn the basics about diabetes and how to treat it when they go through med school. You know, for the most part, territory managers, or a lot of the pump companies and CGM companies don't go to visit internal medicine doctors, or they don't have the time. There's a lot of them out there. A lot of people stay with their internal medicine doctors, and they don't find out about all the latest, the current technologies and the techniques for treating diabetes. Mine was to try and get control of something that I knew very little about. There was very little information. JDF, juvenile diabetes Foundation had just started in 1970 while you're talking about 1975 no material out there to read. We didn't have, of course, the internet, cell phones, those kind of conveniences that we have today. So it made it really tough. You want to go to the library, you might be able to find some material dated back 1959 copyright, and that's what you'd get to read. So you were really kind of on your own. And to even, I think the only goal I had was to try to stay alive. Yeah, and, you know, it just, it was so much different now than what you and I are used to today. Right
Scott Benner 13:52
in present time, people are starting to talk about, they've been talking about time and range for a few years now, but now I'm here hearing them want to talk about time in tight range, meaning, I think 70 to 140 is what their what their goal is that we've been doing that with my daughter forever, but like now, it's going to start getting spoken about that way, which is exciting, because it kind of forces everything to to aim for that target, technology, you know, and everything else. So, I mean, you started beef and pork and, you know, with all the downfalls that it had, except for the one where it kept you alive. But then the next move is to, what is it? Mph and regular? Next mph
Terry 14:29
and regular. Okay, yeah, those were the two big inventions. Do
Scott Benner 14:33
you have a feeling for how long you were on beef and pork before you got to that
Terry 14:37
the beef and pork were probably three to five years, something like that. So
Scott Benner 14:41
you're still in your 20s, and you move over to these other insulins. Do you remember what the shift felt like, management wise? Did you What did you have to do differently? What did it bring to you? Well,
Terry 14:52
you wound up having more lows because the insulin would act predictably faster than. And the beef pork, that was one of the big problems. I bet I spent at least three to four times a month in the emergency room because of a hyper or hyper glucose unawareness event. You test your blood maybe once or twice a day at the most. Well, you know that's a point in time, and 30 minutes later you can either you might test your blood you're 120, and 30 minutes later because you're taking a test, or you're, you know, speaking in front of a big public audience, or something like that, and you get ramped up all of a sudden, you're 260, or 270 Yeah, or 300 you know, you didn't test your blood sugar and understand your blood sugar and what it was doing and what a piece of bread, white bread, would do. Back then, they used to say, if you had a low take a piece of white wonder bread and eat it. But that would bring your blood sugar up and it would, yeah, not as quickly as we'd like to have it, but,
Scott Benner 16:02
you know, it makes such a good point. And I had an experience with my daughter the other day. She's away at college. She just lost her CGM signal for, I don't know, an hour, right? But she's on an algorithm, right? So the algorithm is talking to the CGM and, you know, etc, so in that hour, it happens to fall. It's just crazy how it went. She went out to lunch and had pasta, and her blood sugar was doing great for, you know, an hour, and then suddenly she just loses her CGM, and so the algorithm doesn't have access to it for 90 minutes, till it comes back. And in that 90 minutes, her blood sugar went from like 95 to 320 because the algorithm wasn't, it wasn't like, oh, I should push, I should give more. And that was probably happening to you constantly, all
Terry 16:46
the time, yeah, all the time, right? And, you know, as a result, then I wound up with, to make a long story short, literally, a few 1000 laser treatments in both eyes because I was bleeding so bad from, you know, extreme highs, extreme lows, very unregulated blood sugars. In fact, I even wound up later on, having to have a vectrectomy, where they have five needles. They put in your eye, drain all the fluid out of your variety, get all of the bloaters out of there so that you can see and you don't go blind. Well, I had a good retinologist who literally stayed my sight. And it was, No, it is a tussle, but you'd go in for these into the emergency room, and you'd be in there all day long. Yeah, you know to try to regulate, either get your blood sugar up or get it down. I had an episode when I was helping to paint somebody's house, and it was chilly out, and I got home a little late, later in the evening in the summer, and I had to lay down on the bed. I just felt terrible. And pretty soon I started convulsing. And my son, who was at the time, about no he was probably 12, came in and laid on top of me to keep me from convulsing badly. We called the rescue squad. By the time they got there, my wife, at that while I was remarried, at that time, got divorced and remarried, and my current wife, who helped me immensely, knew a little bit about diabetes, or was making herself familiar with it, so she knew what to do, as far as trying to get a juice in me. But blood sugar wasn't coming up. It wasn't coming up. This was reasons why, you know, we had to go in, into the hospital so frequently to get it going. But I mean, you know, had episodes like that which were very unsettling, so
Scott Benner 18:47
you have a lot of hindsight. So let me ask you this question, because how do you manage today? What do you use?
Terry 18:52
I use the Medtronic 780 G and the G Force Sensor. Okay,
Scott Benner 18:58
and what kind of insulin I use, well,
Terry 19:01
I'm not supposed to tell you this, but I use fi asked, Oh, yeah, I love FIAs, yeah. I know it's the FDA has approved it for all the pumps FIAs, but the individual pump companies want to approve their own, you know, do their own. And I understand my
Scott Benner 19:19
daughter has been using a Pedra in an Omnipod for like, 10 years. So I don't think that's a thing you're supposed to do either, but works great. So okay, so you have fast acting insulin using 780 G. You have your sensor, so you know what it's like to manage now. And give me a tiny bit of context so I can ask my question, what's your range like today? What's your a 1c
Terry 19:40
my a 1c which I don't pay much attention to anymore because of I've got a niece who's a poster child for a very bad diabetic, and he winds up with an A 1c that's maybe, you know, seven or eight, which isn't horrible, no, but not like you'd you. You'd like to have it better than that. But, I mean, she skyrockets all over the place, extreme highs, extreme lows. Well, the average, you know, numerically speaking, the average is going to come out, you know, somewhat better than it really is. Yeah, I average now between 87 and 92% time and range, okay, what range do you keep? Try to keep 180 to 70. Okay,
Scott Benner 20:22
and what's up was that give you like a six two, a one
Terry 20:26
say, probably yes, 162, somewhere. Okay.
Scott Benner 20:30
So my point is, is you know how to accomplish this with with current technology, when you look back on regular and mph, and even your statement about your dad wasn't able to, like, really, they didn't test, you said, and, like, that kind of stuff. Was there really any way to manage back then that would have been any better? Like, what didn't you know then that? Now you can say, Oh, if I had just done this, this all would have been or does that not exist? No, I
Terry 20:54
think you've got a valid point there, because if I would have had the understanding of the impact, like that. Example I used, if my test my blood sugar, it's 120 and all of a sudden, you call me with real exciting news on something, and my blood sugar starts to shoot up. I would know that if I'm getting ramped up about something, or even if I'm just thinking about something, that kind of gets the heart rate going that I would go out and test what I didn't do back then, like I did before I transitioned over to the pump and the sensor, I tested 12 to 15 times a day. Okay, yep. I mean, the end of my fingers, I couldn't even, I didn't even have any sensation in them anymore, because I poked them all so many times here. I mean, I was using my thumbs and thought about using my forearm and stuff like that for blood tests, but I was really trying to manage it once I kind of learned what I could do and what impacted it, because it was more information available as time went on. Ada, yeah. Ada started putting out stuff. JDRF started putting out information, and pretty soon it was in layman's terms. So you, when you talk to a doctor, you know, sometimes you get the medical terms, and you go out of there and you feel like a deer in the headlights as far as or I drank from a fire hose. What did I just learn? Well, how can I apply that? Well, early on, the doctor's offices didn't have any helpful monitor people that could help you stage it. You know the dietitians and trainers for you know how to manage and how to do what you do every day. Yeah, you know the doctors didn't do that. They've got their 15 minutes of fame that you're in there with, and if you get 15 minutes, that's a long visit, as you well know the doctor. So that would have helped tremendously had I known a lot of that stuff. And once I started to learn it, then that's when it started to pick up.
Scott Benner 23:01
And you needed those data points, so you tested. So I did the same thing. My daughter's 20 Terry, she was diagnosed when she was two, so she's had diabetes like, 18 years now, and in the beginning, I mean, we were just, you know, insulin with, uh, with a syringe and, like, a little meter. That's where she started, basically, lever mirror and Novolog. And, you know, hurry once he was in the high eights, the nines. When she was first diagnosed, we didn't know what to do. We were following what we thought were directions. By six months in, she had a seizure because we gave her too much insulin for food or something or time to I don't know what I did back then. I didn't know what I was doing. You know, then you start learning a little more and learning a little more. And then suddenly I was like, I need to test to know what's going on. And I remember the first time that I told her nurse practitioner. Her nurse practitioner said, Why did you like this test here? Her blood sugar was like, 300 something. She's like little three, four years old, you know? And she goes, When is this? I said it was an hour after she ate. And she goes, Well, why would you test her an hour after she ate? You know, she's going to be high. And I went, I don't know that. I'm like, I'm trying to figure out what happened so I can stop it. Like, I think I could stop it, you know? And I remember even then, and this is only, like, 14 years ago in a metropolitan area, at a good hospital, you know, the whole thing where she's like, don't test then just wait till later, it'll go back down. Great. Thanks. But I would test her a ton so that I could get these I almost was making a CGM graph, you know what I mean, with the little data points, trying to figure it out. But you were doing that a long time ago. Before that, I
Terry 24:37
was trying to I didn't realize what I was trying to do, but I was trying to figure something out, because obviously everything I was doing wasn't working. Yeah,
Scott Benner 24:46
yeah, okay, so regular and mph, you're still injecting that. I guess the next step is you get a pump along the way somewhere, right?
Terry 24:55
I got that about 2728 Years ago from the doctor I had was an endocrinologist, and she said, You are going on an insulin pump and sensor. And I said, Okay, I helped start the chapter of JDRF here in Omaha, and started the gala and the the chapter here and in Lincoln Nebraska, and we had a guy who was as fit as any track star you'd ever know, but he was a type one, and he said, I don't want that ball and chain hanging on me now. That stuck with me for a while. Okay, so I kind of resisted the ball and chain concept in my mind, even though it never turned out to be that way once I got it. But my doctor said, if you want to continue to live, you got to have this. And so my very first experience with a sensor was I started with Medtronic, and I've been with them the whole time. Was a sensor that inserted it a 45 degree angle. Okay, I had, after I met with the doctor, we got, we had the sensor, and I was with a brain school pharmacist, especially in diabetes care. Very nice gal. Didn't know a damn thing about the sensors. Okay, we were going to put it on my abdominal area. And I said, Okay, great, loaded. We shot the put the sensor in, and got everything taped up, and I went home. God, this thing is uncomfortable. I thought it was supposed to be. Wasn't uncomfortable. You wouldn't feel it, other than if you touched it on your skin, it hurt even touch the thing. And I thought, What's wrong as a last resort, like we do with everything that we try to put together or learn about, we read the instructions. Okay, so I pulled the manual out, and I started looking at it, and it said, you have to take the needle out. Oh, she left it in. She left
Scott Benner 27:11
did her then,
Terry 27:12
yeah, oh, my goodness, it's a good thing. I caught that. So anyway, I still see her periodically a diabetic events around town here, and I always joke. She says, How's your stomach just
Scott Benner 27:26
grabbed my side when I saw her. It's you. I have a bad feeling. Yeah. Are you using the guardian for now? Are you looking forward to the newer CGMS that are coming from Medtronic in the future
Terry 27:38
sim, pleura, sync, yeah. Do you? Yeah, that's that's out in Europe, has been for a year, and yes, that's going to be phenomenal, because it takes away your wait time or to calibrate, okay, you know, for the two hour calibration, you don't have to charge it. It's got its own transmitter and sensor all combined in one on a server that you just pop it on. The way you go all done, yeah, you know. So that's yeah, that's going to be great. But the g4 is phenomenal, because I think I told you at one time, I went through the clinical trial with the 780 G and the g4 and this is when we were trying to test it. Now, part what you just said a little earlier about knowing the impact of a meal, when you have a meal, or certain meals, what can happen. And with this testing that I did in the clinical trial, and we had it at several different set points, 101, 10, 120, but anyway, I tried it at the 100 and I had to eat a meal, and it was a hamburger, french fries, ketchup, a beverage, non sugar beverage. I just had an iced tea, a salad, and then a dessert, and it came up to about 75 to 80 carbs for that meal, and they did not want me to Bolus, or anything other than if I hit 300 then I would start bolusing, how the pump would react, how it would do what it did, sure at all three set points, having the very same meal, and I had to do it a couple of different times. I never got over 254 without even bolusing, without even Bolus Yeah, no. And I have pretty crazy I will tell you right now with that system. And I tout it because I played with it and experimented with it, that there are a lot of meals, I mean, a lot of them that I eat, of course, I eat a little less than I used to, just because my age, I'm not that hungry. Yeah, you know, I don't eat three hamburgers. I eat one, you know, kind of thing. And there's a lot of meals I don't Bolus on purpose. I look about an hour or two. Later, and it may have bumped up maybe to 200 No, it's interesting
Scott Benner 30:03
to hear your your long term perspective. Because, I mean, I've seen my daughter do the same thing, like, you know, She'll miss a Bolus or something like that, and she'll climb 200 and come back down again. And I know for a lot of people, they're like, oh, I don't want to be that high, and I absolutely support you not being was so just, like, interesting, just how casual you were like, Oh, you went up to, like, 250 and it came 50 and it came back down. That's amazing, isn't it? And I thought, like, You're amazed by that, because you have context from 50 years, you know, where that situation before could have made your blood sugar 700 and put you in the hospital? Yeah,
Terry 30:36
exactly, exactly. That's really something to me. This is the fourth iteration of the artificial pancreas project, actually, JDRF, I know that it's break through T 1d is our new name, but JDRF, back then, started this 18 years ago, sure. And they got all the pump companies and CGM companies together, sat them down at a table with the FDA, which I don't call the Food and Drug Administration, I call them the federal delay agency.
Scott Benner 31:06
Takes a while sometimes, doesn't it? Yeah.
Terry 31:09
Anyway, they sat down and they said, What does an artificial pancreas look like? And they gave them the minimum requirements from the FDA perspective, and everybody went off. And all this competition has us right now. This is the fourth iteration of the artificial pancreas, and I think the next iteration that Medtronic coming out with. Now, I don't know about tandem and an Omnipod, and those guys are all going to have their own version. We're in an age where we've got an artificial pancreas just about complete. Now, it's not a biological cure, but it's theoretically a technological cure, yeah,
Scott Benner 31:48
and for a person who had 1000s of injections in their eyes, I would imagine that seems like pretty awesome to you. What else happened to you in that span of time, besides your eyes?
Terry 31:58
Well, I had gastroparesis and gastroparesis is where it affects the main vagus nerve that runs down the center of the body. It controls respiration, somewhat of the heart rate, motility, digestion, and when you get that, you have explosive vomiting and diarrhea at the same time you get hospitalized. I was in there for three days before they could get that under control, and that's because of the the highs and the lows just going, Yeah, completely berserk. And you were in the bathroom, you didn't know whether to stand up or sit down. I mean, it was, and sometimes you had a bucket here and you were sitting there, because it got that bad. And of course, when you think of respirations are controlled by that vagus nerve, yeah, and all of a sudden you're doing enough damage to it that you don't have the motility of things moving through. That's kind of scary. And then it impacted, course, my site. Obviously, I'm I've got problems with my site right now because of the first 20 years, but after I got on the CGM and this pump for almost 30 years, I had no treatment for any diabetic related condition period, yeah.
Scott Benner 33:22
So you think now what's happening to you now is more a function of age and prior damage, but exactly, exactly once you found that that. Listen, I've had a lot of people on talk about stuff like that. There's a guy that came on one time, lovely guy named Mike. He's in a, I mean, he might be in an episode called complications, are complicated, or something like that. But he, you know, he grew up through a time like you're just, you know, describing. And he said that by the time he found the podcast like his, his site was really waning, and it actually got better, like it improved, and then it reverted, and it got better. I mean, didn't go back to, you know, like when he was, you know, two years old, or anything like that, but, but he had a real significant improvement. I asked him why, and he's like, I learned how to use insulin from you, and now my blood sugars are stable, and they don't bounce around all the time, and they're lower more than they're high. And that's that, you know, so, yeah, it's a little sad that it took that many decades for people to figure it out, and you're still involved in the community. So, you know, there's still, it's a coin flip. Whether you get a good doctor or not to manage your diabetes, you don't know who you're going to get right. Like, and you could easily get somebody who says, still, like, Oh, it went up to 200 after a meal. It's fine. Did it come back down on its own? Then it's okay. You know, you can still get that advice today. I do these conversations with people like you, hoping that doctors will hear it and think I should maybe put some more effort into figuring out how all this works so I can explain it better, so that, you know, I'm not talking to somebody today who, 30 years from now, is going to need to have the fluid drained out of their eyes to get rid of their float. Like,
Terry 34:54
you know what I mean? Like, yeah, exactly, yeah. That shouldn't happen to anybody going for. Forward. Now, part of that, I can just dovetail on what you've been saying. There are you
Scott Benner 35:04
starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure, once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025
Terry 35:47
going to an internal medicine doctor is fine, as long as you're willing to pursue on your own some of the technologies that are out there, or ask the Doctor about the technologies, because they don't get the visits like the endocrinologists do with from the sales reps, territory managers, whatever you want to call them, for the companies that are developing this technology. And it's going fast, as you well know, it really moves out there. But one of the things that I'm doing. I'm president of the cosmopolitan club here in Omaha, one of them, and we raise money. Our club raises money for scholarships for kids to go to diabetic camps. There's two of them here in Omaha for at different ages, and we raise money for that. But I'm getting this club involved in creating a brochure that says, Why do I need a CGM, and what the hell is it? And those we're going to go to every internal medicine doctor in the metropolitan area and make sure they've got those on their desk, make sure that they pass those out to their that I'm going to list the companies that make them and say, if you're a type one or you're a type two and you're using insulin, then you better have a CGM on. There's no reason not to, because those companies have programs for people that can't afford it, Medicare and Medicaid cover them right now, or if they're on Medicaid or Medicare, like I am now, because I was one of several advocates that we did advocacy work in Congress for five years to try to get Medicare and Medicaid to cover CGM. And I mean, I could tell you all kinds of statistics and war stories on that, but we'll leave that for a different day. Maybe
Scott Benner 37:44
I keep thinking that you're still involved in all this, probably because of the impact that just Ada and JDRF putting any information out meant to you when you were younger, like there was finally something to try to figure out, and you're just trying to continue to do the same thing for people. Is that
Terry 38:02
right? Exactly? I'll do it any way I can. In fact, sometimes if someone like yourself or myself sit down with somebody across the table and talk to them about it, having the experience of having a loved one with diabetes and or having it yourself, you're a much better representative, per se, than the sales reps, because the minute they find out they're a sales rep, then, you know, the hair goes up on the back of your neck and you're waiting to say no, if they'd shut up long enough to listen to you, if they hear it from me, I have no skin in the game other than I want them to get the best possible care so they don't have to go through what I went through. Yeah,
Scott Benner 38:44
yeah, no, because, and it's beyond your, you know, your physical health too. I imagine that diabetes has had implications in your personal life, and, you know, probably your jobs and all the I mean, your blood sugars are bouncing around. You're in the hospital. You know, your dad's driving into a ditch. I, by the way, I figured it out earlier. Was your dad born in 1918,
Terry 39:05
yeah? I think, no, it might have been a couple years earlier, a couple years older than that. I'd have been 16, yeah,
Scott Benner 39:10
because you said, like, he wasn't a very involved dad. And I thought, I wonder when he was born, and when I just tried to figure it out my head, I was like, yeah, it's that was probably like some warm, loving having him drive out to the you driving out to the lab and him going, you have diabetes? Like, uh, having a yeah, oh, yeah. Father, Son moment.
Terry 39:28
He was born right about the time that they started in Canada, started researching, trying to figure out what caused diabetes, because that was called the sugar disease back years ago, yeah, and when you had the sugar disease, you could not eat any carbs at all. Period. That's the only way they treated it. Tell Dr Banting. Frederick Banting discovered it in 1919 I believe. And then in 1921 22 he had perfect. Did it enough to do the beef, pork insulin. That's when Eli, Eli Lilly came in and started backing him up, yeah, funding him so he could get insulin on the market. It's
Scott Benner 40:10
pretty, it's pretty great moment for everybody. That's for sure. I, you know, my daughter's said to me before, she's like, you know, I was born at a certain time. I just would have died when I was two. I was like, and that's hard thing to know your whole life. You know that that something like that could be how many children did you end up having, and did any of them get diabetes?
Terry 40:27
No, I had two boys, and neither one of them, thank God, or none of my five grandchildren have it. So I'm keeping my fingers crossed that none of them get to the age of 26 and all of a sudden discover, yeah, that. You know, of course, if you're going to get diabetes, Scott, this is the best time to get it right now, with the technology that's available, if you put a CGM on and even even do a borderline trying to control it or manage it, you won't have any of the complications that I had to go through, I was
Scott Benner 41:01
gonna say, be a million miles ahead of where you are at that age. Yeah, you brought it up earlier. Like, where does this go from here? Like you said, you know, Medtronic got another sensor coming in America. All these other companies are, they're in this battle, which I agree with you. I heard you say it earlier. I like that they're competitive, because I think it keeps them moving. I do wonder if there's going to be another sit down at some point where maybe the next thing that an, you know, an outside entity says to manufacturers is like, Okay, we figured this out. Like, now, how do we get this better? Like, right? How do, how do we make this algorithm more, you know, aggressive when it needs to be, not when it doesn't need to be. Like, keep innovating this thing. Because you don't know where this could be. You know,
Terry 41:41
when I was in on the clinical trial, they asked me to sit in for the diabetes technology society. I'd never heard of it before, and these are scientists and technoids from all over the world that sit on this while I was on the call for 13 hours, and they did it for four days, and they talked about it, and some of the Technos had talked about the stuff that they've got coming out, or that they've perfected, and their weight. They're going through clinical trials now, one of them that I was really excited about, it's just going to be an app that's going to be on the phone. I don't know if this is going to be Medtronic or omnipot or tandem, whoever's going to get it, because these technoids, University of Virginia is in Charlottesville, had the guy that's in charge there of that department is really an innovator in this air, in this area, and what it is, it's An app that you go out to eat, let's say at Burger King. I'm just going to use an example. Go out to eat and you have a burger and fries and a drink, and I don't know, some kind of dessert or something like that, in front of you. You look at it, how do you know what how many carbs are? They can tell you the calories, but they can't tell you the carbs. Well, you touch this app, and it'll automatically come up on your camera, and it'll look at it, and it will give you an estimation of the carbs of that meal. And it says you can either take this or you can up up your Bolus. Let's say it said 50 carbs. You could up it 50 carbs, and have it do the calculation, like it does now for whatever your insulin to carb ratio is, or you could lower it, whatever, just based on what you think. As we're creatures of habit. We have a tendency we go back and have the same thing again, if we liked it. Well, if you come back, it's going to say, Okay. The last time you had this, you went low, because you exercise, and you didn't tell me, so you got to put in, yeah, I'm going to go exercise. So put it on a temp target. I went out and exercise, so I took lower insulin, and it will keep track of that every time you go back and have that same meal or something similar to it. Yeah. So, I mean, that's a huge break, because people even to this day, I miss judge on carb count, sure, for some things that I look at and every diabetic does day in and day out, you're going to miss, miscalculate, say, Well, the last time I had that, I went real high. So I'm going to give it a little bit more. Well, there was a reason why you went high, because you did something else that you don't remember. Where this app can keep track of that. Yeah, and all you have to do is just enter some little code in there to say, I exercised or I went home and slept and ate popcorn.
Scott Benner 44:35
I don't think we're that far away from AI based technology helping you with this stuff too, like seeing what your settings are and seeing what your outcomes have been, and making suggestions to you about what maybe you could move settings to to help you. And I don't think we're far from that at all, honestly. So because
Terry 44:54
the Medtronic comp right now has has had AI in it for about five years, and. And they put some real sophisticated algorithms in, because it's got this meal detection technology. And when I sit down and I start moving my my hand to my face, like that, the pump can detect somehow that kind of motion. Now I know they have thing that's like a Fitbit that you wear on your hand, and if you use it on the hand that you eat all the time with that will automatically kick in the pump to know that you're eating and pay attention. It'll either buzz you to say, don't you want to give a Bolus, or what are you eating that you maybe shouldn't, or you just have popcorn, or something like that.
Scott Benner 45:41
That sounds awesome. I had a guy on once that was talking about, you know, just how the implications of, as an example, like different pizza joints are like, right? Like two slices at one place might hit you differently than two slices at another place, and that our phones now know where we are all the time. So, you know, you go out and you tell them having pizza, and it knows you're at Pizza Hut, and then you go to another place and have pizza, and it knows you're at a different place, and it can, like, kind of say to you, like, the idea is that it would be able to tell you at some point, hey, don't forget, we're at Pizza Hut right now, and that takes 25% more insulin than the pizza over here, or something like that. Like, right like, I mean, that doesn't exist right now, but that's not crazy to have, you know, like little things like that. So I want people thinking about those things and ways to win them. Yeah, yeah,
Terry 46:29
they really are. I think some of the stuff that's going to come out in the next 18 months is going to blow our mind. Yeah, I'm excited, because a lot of it these companies can't say ahead of time before they go to the FDA all the stuff they're doing, yeah? Well, yeah, once they've got it in the FDA for review, then they can say, Okay, this is what we submitted to the FDA. That may not be the final thing, once it's approved, right? It may be a little different, you know? So hopefully better the FDA is paying attention. There
Scott Benner 47:02
are companies designing more stable glucagons to be in, like, dual hormone pumps, you know, like, that kind of stuff is all like, I mean, imagine that, you know, you start getting a little low, and it just kind of bumps you back up, and you don't even know what ever happened. That's right, yeah. I mean, that kind of stuff is that
Terry 47:18
that's kind of, kind of here now. With beta bionics, they came out with their new pump, and it's again, where you don't interact. I've never worn it, so I'm just speaking from people that have had it. Very few people right now have it, but more will. You don't have to do anything with it. So I but it doesn't have the dual hormone, no,
Scott Benner 47:41
but yeah. But they did just enter into an agreement with uh zerist to for zeros to design one for their pump. So, like, I don't know, it probably take years, but, like, that kind of stuff is, like, that stuff's exciting to me, you know, very, very and having you on to talk about your your entire history with diabetes. And to really put it into context, I think it makes this stuff even more exciting, because it could be, you know, for somebody who was diagnosed last year, this isn't exciting to them. They just want to know why it's not here yet. Like, you know, we live in a cell phone culture now where, you know, like, things get changed pretty quickly. But to hear your perspective, I think is valuable. Like, this must seem like magic to you on some level.
Terry 48:22
Oh, it does. I never thought I would live long enough to see what I'm experiencing right now, really, on all the all the CGM, some pump companies,
Scott Benner 48:31
why did you think you wouldn't live this long? And why do you think you're alive? I didn't
Terry 48:35
think I'd ever see this kind of development, because how long it would take. You know, we never heard of AI years ago. You know, we didn't even know about the internet, you know, back then. So all of a sudden, all of this stuff starts to come together. Now we're drinking information from a fire hose. So then all of a sudden, I'm just, I'm overwhelmed with all the information that's out there, and that's exciting to me that we've got that available now, but back then, I didn't see that light at the end of the tunnel. I mean, it really you just, you didn't look at it. You just were trying to manage yourself from day to day, and you felt defeated every time you went into a doctor's office, if you kept track, and I tried to keep track of my blood sugar readings, and they were always terrible. Every time I took a blood sugar reading, I managed to take it all at the wrong time, I'm sure, an hour after I ate. And it's up to, you know, almost 300 and I'd write that down, well, you'd go in there, and it was you were going to be judged on your A, 1c, and whatever you kept track of that way. And that was frustrating, as all get out, because you felt like a failure. Because I like getting grades in school, you know, I didn't get all A's and B's or one's and two's, you know, I made. Hit three. I made a couple F's in there, you know, or a five. And so I think that was kind of the way doctors didn't try to do it on purpose. That's the way they made you feel that they didn't gloat about all the good things that you did, because they were pretty minimal, but they certainly focused on the things you screwed up, yeah, and you didn't do or what you should do so that to have this come out like this. And my efforts of testing 12 to 15 times a day before I got a CGM finally, and a pump, you know? And I could say, Oh, my God, look at that. I can tell what I'm doing wrong. And when I tested and, you know, geez, I was doing damn near everything wrong,
Scott Benner 50:44
and you're willing to put the effort in, you just didn't know where to put it. Yeah, exactly, yeah. My daughter, like I said, she's in college now. She does a great job for herself, but the college food is tough. Oh, I'm sure not the greatest food. It takes more insulin. Like, I listen to a lot of people's stories. I've heard 1000s of people on this podcast, right? So I hear adults come back and tell their stories about college. For example, there's, I didn't Bolus for days for my meals. I'd only put in my basal insulin. Like, you'll hear all kinds of stories from people. My daughter, she Bolus every time. Great. Like, my biggest argument with her is, like, she doesn't, like, you know, sometimes I wish she pre bowled a little longer, and I do wish that she would look up after the meal, like an hour later. Like, that's a thing, I guess I was doing that she wasn't doing, right. But we're working on it. We're not. Nobody's panicking, right? Like, nobody's like, like, oh, nobody's hair is on fire. Like, she's doing a great job. She's gonna keep like, a six and a half a 1c at college on her own, which is unbelievable, insane, right? It's so great, yeah, but I do want her to look up an hour after she eats and just reassess and like and that kind of stuff. So we just, we go about it very slowly. We're trying to keep our relation. We don't want to push her away. We don't want her to get to the point because, I mean, she's gonna just one day be like, Listen, I don't need your help, but she does. She needs someone's help. Still, trust me, you could use somebody. You're 76 you could use somebody's help. You know what? I mean, like, we everybody could use the sounding board, and so we're just going at it very slowly and not panicking. I think that's why I liked it so much. When you said, like, oh, it goes up to 250 in it, you know the algorithm, like, knocked it back down again. You said it kind of casually, because that's the attitude that I'm adopting right now while I'm speaking to my daughter while she's at college, a little bit of like, you know, not a sprint, definitely a marathon, you know, we'll work at this slowly. A couple of months of blood sugars jumping up higher than they used to at meals is not a big deal, as long as long as it doesn't continue in that direction. That's how we're thinking about
Terry 52:43
and then the technology that we have, having her on the phone, having the ability to look at your blood sugar readings on a watch. I like it, because if I'm driving, I can just tap my watch and I can see what my blood sugar is, in case it, you know, starts drop. I mean, it'll warn me, warns me on my watch, on my phone, on my pump, right? So I have no excuse for not doing it. I always carry 20 or 12 ounce Gatorade with me. I always have them in the car. I always have them. Whenever I go anywhere, you drink one of those, and it'll take you out of a low without raising you up too high above probably 130 bounce on the work 4040,
Scott Benner 53:22
and you make sure. So tell me why. I mean, I think I know why, but I want to hear it in your words. Like you're very much on top of your diabetes, right? And you have been for quite some time, because there are plenty of people who have all that information, and they just ignore it, right? So why do you know it's so important, so much so that it's at the top of your mind all the time, like, what? What from your experience? Keeps you in that mindset, because you don't seem burned out, you don't seem upset by it, you know, no,
Terry 53:48
the fact that I've got the opportunity to manage it effectively. But when you have gastroparesis, you have your eyes affected like mine were, even the ability to swallow has been affected by some of the crap that you know, I did the damage earlier, so you have enough experience in that area. And so all of a sudden, somebody walks in says, Here, I'll give you these things that'll help do what you've been trying to stay away from her trying to accomplish before they give them to you. Use the tools they're there to make your life easier. It's 1000 times better for me now because of the tools that I have, and they're not even what you know, some of the biological side of the equation is working on with beta cell encapsulation, and, you know, stem cell manipulation, that kind of stuff is coming, but you know, it could be another 10 years before that gets through. And if you try to get something biological through the FDA, you think it takes long to get technology through. Way. Try to get that through. Yeah,
Scott Benner 55:01
it's gonna take a bit. You have so much perspective, and you know the alternative, and you're like, I mean, if you're gonna give me these tools, I'm gonna use them, because the alternative is needles in my eyes, and the alternative is, I mean, the vagus nerve being damaged is it's not just I have slower digestion. Now, like you said, there's a lot that comes with that. Yeah. Are you impacted by gastroparesis at this point in your life? No,
Terry 55:25
no, I haven't been since I got on the pump and sensor. Good for
Scott Benner 55:30
you. That's awesome, Terry, you're great. I talked to you forever when you meet young people and because I'm assuming you do with all the good work you're doing everywhere, is it in your mind, like, how do I impart the important part of this to them without scaring them or making it be like, Oh, this old guy thinks he knows something. Like, you don't even like, how do you talk to people? Because I struggle with that. Sometimes I try
Terry 55:51
to make get relaxed. Throw some humor in there. You know, like when I was on the beef pork insulin, I tell them I used to smell like a bacon cheeseburger. Now, some of them look at me and say, really? And I said, No, that's a joke, you know, but I it gives them a little perspective. I said that stuff was terrible. It didn't work. What you have right now is 100% better than what I had back then. Now it's not I walked up to school through 10 feet of snow barefoot both ways. You know, it's not one of those kind of things. I had all these complications, and I just try to go through them quickly. You don't want to go blind, you don't want to have a limb amputated. Have digestive problems and have to wear different bags, and your kidneys fail, and you have to go to kidney dialysis, you have the opportunity to eliminate all of that,
Scott Benner 56:48
so you give them the perspective without trying to scare them about it, like it's honest, but it's not like, it's not like you're trying to jump out from behind a door.
Terry 56:56
One of the nice things about diabetes, you can be looking at your phone all
Scott Benner 57:01
day long, if you want finally have an excuse to hold that cell phone. And nobody
Terry 57:05
can come up to you and say, put that cell phone down. You can say, I'm checking my blood sugar.
Scott Benner 57:11
That's probably a good way to get kids interested, because most people don't know that. Do you have a cardiologist? I'm wondering how you're like, look like, how do you manage? Are you trying to pre empt any kinds of because, I mean, you have, like, high blood sugars all those years like, you probably feel pretty lucky not to have any heart issues. But do you manage it like? But you know, you're keeping ahead of it.
Terry 57:34
The doctor that I got after I got rid of my internal medicine doctor, and that was for various reasons way back then, before I started with this endocrinologist. She's a doctor, she's from Serbia, and she's absolutely phenomenal. I just love her. And she's now kind of developed into research, and so she doesn't take new patients on, but she kept me on because I've been with her all these years. This was almost 30 years ago. She put me on a low dose blood pressure medication in a low dose cholesterol she said, you don't have either one of those now, but she said, In 20 years, because you're type one diabetic, you're going to be affected by that. So art wise and cholesterol wise, because of her and what she did, I have been without any real problems to that effect. Now what I did is I moved myself. You know, you have to in today's medicine. Got to have an internal medicine doctor as a primary care well, I went over to a geriatric doctor, and she is, you know, takes care of people that are aging, aging, things that are going on between her and my endocrinologist. That's my, basically, my sphere, other than the fact, I had both of my knees replaced due to osteoarthritis. Other than that, those two ladies are the ones that are taking care of me. And I've had stress tests. I've had heart monitoring. Blood pressure, sometimes it gets a little bit high, probably because I get a little too intense with all my work on diabetes, going around to people and get excited about it. Other than that, no, I haven't. Oh, that's great. Haven't had any other residuals.
Scott Benner 59:32
We don't talk about this enough, and if I talk to somebody your age, and I don't ask, I'll get an email about it. So you're having any trouble dexterity wise, do you said a thing you worry about for the future with pumps and inserting things,
Terry 59:45
no for the most part. I mean, got a little arthritis in my left hand and my middle finger. For some reason, it just hit that. That's been it. But otherwise, I can manipulate and put on infusion sets and sensor now I do have my one. Helped me put on a sensor, because I like to put it on the back of my arm, and it's easier for her to put it back there than it is for me. But I could put it my abdominal area or, you know, a lot of times people are putting it on their thighs, right, you know? So, yeah, I don't have that problem. I do try to, I exercise every day. I walk about three miles every day, and I try to do resistant exercises because of my eyes and the blood vessels. I can't do, you know, heavy weight training or anything like that, but I can do resistant, resistant bands, stuff like that, trying to, you know, keep myself in shape and do balance exercises, because the older you get, for some reason that seems to go one way or the other. So I try to try to keep that, you know, functional.
Scott Benner 1:00:50
You don't want to fight through all this that fall. Yeah, I feel like, no, in that time it takes you to hit the ground, you're gonna be like, Are you kidding me? Is this how it's gonna happen?
Terry 1:01:00
Exactly, exactly.
Scott Benner 1:01:04
Diabetes for five, five decades and a dog toys gonna take me out, huh? All right, yeah, exactly No. I'm
Terry 1:01:12
not gonna go that way,
Scott Benner 1:01:13
not today. Satan, like So Terry, I can't thank you enough for doing this with me. I really did enjoy it. I appreciate that you come on and and, uh, and having this conversation with me. Thank you very much. Hey, I
Terry 1:01:24
did too. I hope that it's helped and it will help other diabetics, because that's my main goal, and I'd be willing to talk to any diabetic or help them understand I do every day as a Medtronic ambassador. I'm on the board of the UNMC Med Center Advisory Board, so I try to work with diabetic patients as much as I can, and I'm more than willing to do that.
Scott Benner 1:01:48
Are you on social media? Can people find you or
Terry 1:01:50
yes, yeah, yeah. It's Terry Weland, okay, you should join my R, R, Y, W, E, l, a, n, d, Terry, you
Scott Benner 1:01:58
should join my private Facebook group, there's 53,000, active members in there. They could use your your your perspective, sometimes, I
Terry 1:02:06
will do that. Pretty awesome. Actually send you a request and you can honor, let me,
Scott Benner 1:02:12
I'll send you that. That'd be wonderful. Well, thanks again for doing this. I hope you have a great weekend.
Terry 1:02:16
Thank you. You also, Scott,
Scott Benner 1:02:18
thank you. Applause.
Speaker 1 1:02:19
A
Scott Benner 1:02:26
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