#1416 Force of Nature
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Angela, a fierce T1D advocate, navigates family-wide autoimmune battles, looping, and relentless advocacy for her daughter’s health.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner (0:00):Welcome back, friends, to another episode of The Juicebox Podcast.
Angela has four children, one of them—her daughter—has Type 1 Diabetes. Today, we're going to talk about advocacy, looping, Hashimoto's, chronic kidney stones, and other autoimmune conditions in her family. This is a complete story. Nothing you hear on The Juicebox Podcast should be considered medical advice. Always consult a physician before making any changes to your healthcare plan.
Don't forget to save 40% off your entire order at CozyEarth.com. All you have to do is use the offer code JUICEBOX at checkout. That's JUICEBOX at checkout to save 40% at CozyEarth.com. When you place your first order for AG1 with my link, you'll get five free travel packs and a free year's supply of Vitamin D. Visit DrinkAG1.com/Juicebox.
If you are the caregiver of someone with Type 1 Diabetes or have Type 1 yourself, please go to T1DExchange.org/Juicebox and complete the survey. This should take you about 10 minutes and will really help Type 1 Diabetes research. You can help right from your house at T1DExchange.org/Juicebox.
[Music Plays]
Today's episode of The Juicebox Podcast is sponsored by the Contour Next Gen Blood Glucose Meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at ContourNext.com/Juicebox.
The episode you're listening to is sponsored by US Med. Visit USMed.com/Juicebox or call 888-721-1514. You can get your diabetes testing supplies the same way we do from US Med.
Angela Kritzberger 2:02
Hi, my name is Angela kritzberger, and I am the mother of four, spouse to one, and our daughter is a type one diabetic. You
Scott Benner 2:14
just made me think, Angela, one day, I hope somebody says I'm the spouse to four, mother to one. I can't use my whiteboard because I used it during a call for Arden for school, and she still hasn't written down everything she needs from it. So you have four kids. What are their ages?
Angela Kritzberger (2:27):So, the ages are 26, 24, 19, and 15.
Scott Benner 2:33
You're my age. You're 53 I'm 5252 it just turned 53 How long you been married?
Speaker 1 2:40
We've been together 36 years, and will have been married 29 so yes, we were 16 and 18. Wow, were you the 16? I was a 16. Yes, my husband's going to turn 54 tomorrow. I have a question.
Scott Benner 2:55
Do you think that just happens? Because eventually girls mature more quickly than boys, and then they want to talk to somebody that doesn't seem Dippy to them. So they go with older guys
Speaker 1 3:09
Most definitely. Yeah, I found a good one early in life that
Scott Benner 3:13
sounds like it that I was gonna do the math 36 and I have to, like, carry a one, and that makes that four. And this is a six, and then the 316 you've only you were 16. Well, you knew that, but I was just proving it with my
Speaker 1 3:27
math. We've been together a lot longer than you've been married than we were ever were alive. Yes, yeah, that you were wherever. How old were you when you got married? I think we were 22 and 25 Wow, somewhere. No, yeah, something like that. You
Scott Benner 3:39
met a boy when you were 16, dated him for six years and then married him.
Speaker 1 3:44
We didn't go to the same school. We grew up in the same area. We're both farm kids, and after we started dating, we found out that our dads happened to be best friends back in the day, when you know, they were showing animals and all those connections. So it's been a pretty cool life because our dads had been friends since 1960 I think, oh my gosh, went to proms with each other, sisters, cousins, whatever. So anyways, it's been a pretty cool life because our dads, both my husband and I, went to college, to our State University, and got our degrees. He was engineering, I was communications, and we moved back home to take over our family farms. So it's pretty cool. We were able to spend our lives part of maybe later. We just lost my father in law this year, but and my dad suffered a stroke in March. So our lives changed quite a bit in the last last few years, but we were able to farm actively with our dads for a number of years, which is pretty
Scott Benner 4:42
cool. Isn't that amazing? At first, I was going to make a joke that you were grown on a farm, and you said you were farm kids, but this is much more interesting. Did you go off to school with the intention of learning something that would help the farm? Or did it just work out that way?
Speaker 1 4:54
You know, you really don't know if you're going to marry the person that you've been dating. I think that was probably in the. Back of our minds. And there were certain things I knew my heart belonged back here, so I knew that I wanted to have a degree that was very useful. And anything that I, you know, education was something I could have looked at. But when you put yourself in a very specific rural area, and if there are teaching positions for what like, let's say music. I love music. The, you know, the music teacher that we've had at our school system hasn't retired, you know, for 30 years. So, you know, I guess I went into communications. It's something that I was really interested in. Didn't know it was going to take me business. Knew it was very appliable, but I knew that my husband was going to farm, you know, so, but there were things, certain things that I wanted to do before I got married, you know? And so I achieved those and we got married. So one of them was going to Europe, and I sang in the concert choir in college, and was able to tour all over Europe, which is a pretty cool things, geez. So yeah, so anytime our kids have opportunities for doing those kinds of other way,
Scott Benner 5:56
yeah, yeah, that's excellent. You're going to tell me, there's a lot of autoimmune in your family.
Speaker 1 6:01
There's so much I had to write it down. I used to hate ordering
Scott Benner 6:05
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Speaker 1 7:27
okay, in the context of how you like to outline it, so I'll just kind of review it. So for myself, I've had hypothyroid Hashimotos for 30 plus years. I've had celiac for 10 years, kidney stones for as long, unfortunately. So our family on the female side has thyroid issues, and then we have type one diabetes ladder. My maternal great uncle was diagnosed in his 20s and passed due to complications at 59 from not well controlled diabetes. We have on my paternal side type two, a ladder, and just kind of the the normal aging process. So my dad, his grandmother, I've gotten into a lot more of the type two care recently because I'm close with my parents, and he suffered a stroke, and so that's been a little bit different with hospital stay versus home stay. So really kind of digging into that and got him connected so that he could get the glucose monitor, like our daughter, to really study those trends. And then, on my husband's side, he also has type one, late onset. His sister was diagnosed in her 20s. She's since passed not from diabetes at 39 and then also type two ladder, just again, kind of the later in life, genetic maternal grandpa. And then our daughter was diagnosed with type one diabetes when she was seven. So, you know, had grew up in the 80s, and I think 70s and 80s, I guess. But you know, diabetes is the first thing that comes to your mind, there's just been now, determination between type one, type two and so really trying to or juvenile diabetes, really the conversations about, Gosh, who had this and and whatnot, and then all of these things start coming to your mind, like, Oh, I remember that lady at church, we always had to have frozen orange juice. We're rural area, frozen orange juice in the freezer, and we have to make it quick for her, you know, when she start passing out, you know, so, just things like that. And, oh, my uncle, I remember, what did he have six Snickers bars, you know, the week that he was diagnosed, some of those things. But you're, you're like, dang, I didn't know it was going to be, you know, how did I not own the sign? So, you know, my story, I would say, isn't much different than many. No, everybody has that. But tell me again, which one of your kids type one? It is our youngest. She's 15. Yes, I think I'm at the point now. Uh, she was seven. She was 15. Now she's had it for eight years. It is important. And the more that I you know, I do work with advocacy, it's important. Really for the testing and the things that we've heard about and finding out where the connections, you know, is it environmental? Is it genetic? Yes, it's all of those triggers. But at the time, we were experiencing a lot of trauma. My father in law was diagnosed with non Hodgkin's lymphoma the same week that our daughter was diagnosed with type one diabetes. And so everybody's story, you have a lot going on. We're farming. My husband had been taking my father in law to the doctor every other day, 30 miles away locally. Our first born was graduating from high school. We have a large farm. We were trying to get the planting in. There's just a lot, you know, a lot going on. Did we see the signs? Didn't we see the signs? But just, you know, my husband and I kind of conquered it and divided. I took my daughter's care, my husband helped, you know, with his his mother, with his dad's care, and so there's just a lot going on there.
Scott Benner 10:52
It's a lot to do with having your own business and not being able to stop. Yeah, I see other people like, something goes wrong, and they're like, Well, I took some time off and I, I'm, I'm always like, Well, I I got up earlier and stayed up later. Like, that's how I handled my problem today. Because, you know, I can't, I just can't do that, even my it's so odd that you said about your father in law. My father in law is at the end of his life right now, and my wife just went to just now, like, literally 20 minutes ago, she left to meet her mom at the hospital to help her mom understand the care that they're going to give him at the end of his life, so that, you know, she can understand what they're doing all that. And even my wife's got a, at least, has a job where she can call somebody and say, I'm going to go for a little while. I'll be back. But they also under it's not a day off, they understand she'll just stay up till two in the morning and do her job or something like that, you know, right? But I watched everybody else last night. They were like, well, I took the day off or I had time. And I was like, Oh my God, that's fantastic. I tell the guy I work for that I need off, and he yells at me so
Angela Kritzberger 11:56
and I think that's the benefit too for us, is that we have the opportunity to be able to have a more flexible schedule. Yeah, you know, I'm in the Midwest, so we have inclement weather that prohibits us from doing, you know, really any outside work from, you know, freeze up until FAW. But, you know, we work year round. I don't work in the shop specifically on equipment, but we do a lot of the vet work ourselves on the equipment My in laws we are actually on. We're fourth generation, fifth generation, technically, because the great, great grandma came with the family here on the original farmstead for my husband's family and his parents built their retirement home just half mile away from us. So we're very close and and my parents are 15 miles away. And now, since my dad's stroke, I've been, I guess, really, the primary advocate for him as well the wonderful and the flip side of my father in law getting diagnosed eight years ago was he just passed this year, so we had a lot of time with him. He decided to stop treatment when he had a recurrence, because it was, you know, lymphoma was going to it was going to surface again somewhere.
Scott Benner 13:05
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Speaker 1 14:16
worst side effect, I guess, for him, after the chemo and the treatment was he lost the ability to walk, but he was able to transition and be in a wheelchair and and lived a full life, and was on hospice for, I can't remember, four years, but was kicked off because they
Scott Benner 14:31
were like, listen, you're not really dying. You got to get off. This. Is that what it was? Yeah,
Speaker 1 14:35
our family joke was like, Okay, kids, we better go, you know, make sure we go to Christmas, because this might be grandpa's last Christmas, and we had like, six last Christmases with grandpa, and so it was amazing. And he just passed this spring, and yeah, we've just had a lot of things everybody has lost in their life, but, you know, he was just an amazing person, and my dad's best friend, and so it's been hard on my dad, too. And then my dad had a stroke in my. Search, and it was just kind of crazy, because we had just buried my father in law, like six weeks before that, and my husband had to on a regular, not regular, but often help his dad. When he had fallen in my dad had fallen it was kind of like, my dad is a seven backseat. We just thought it was his back. It's like, what's going on. Then it was a stroke. But the wonderful thing about all of it is, although we're rural, we're about 45 minutes from two major the biggest cities in our state, in North Dakota, we have an amazing facility right here in my hometown where we live. And before I started farming full time with my husband, my job was the Foundation director at that medical facility, and we had a $13 million building and expansion project, and so we really have a full scale facility that is, I think, really hard to match, because we have clinic X ray, P, T, o, t, assisted living, nursing home, skilled care, nursing emergency room. We just have an amazing facility, and I was really proud of being part of that, because we had to raise a million and a half for that building project, locally, for that project, and my grandma was one of the first residents in the nursing home, long term care, and I helped license the assisted living portion, portion of it. I think just using my skill set, again, why did I get a communications or business degree? I don't know. You know, I use it somewhere. Do you think your kids
Scott Benner 16:25
think the same way you did? Like growing up like because it's obvious speaking to you that like your focus was on community and coming going back to it, and building on top of what was there already. But when I hear younger people talking now my kids and other it's either like, what do I want to do, or where can I make money, like that kind of thing. But do your kids have the same community feeling? Or do you think they're Do you think that's a time passed too young
Speaker 1 16:52
to tell however our son, our oldest son, is an educator, a wonderful person, and one of those lifelong learners, of which I think I am, but not to the level of he is, like, if I could phone a friend, I should give you his number. Yeah, he is. He's like, Cliff Clavin from cheers. Yeah, you know, we have the board game factor crap, and he knows a lot of facts. Yeah, he's just a lifelong learner. But he moved back to our community because he did want to very family oriented too? Yeah, I don't know. I think all of us want to see the world, but maybe we want to come back to our roots. And obviously, with the family business is a little bit different for some of us. Yes, you can choose not to do that, but just for me, inherently, my call is to be close to home, part of this community. When I quit working, when you're a Foundation director, you're involved in a lot, you know, obviously asking for money from people for supporting the programs that are, you know, at our facility. But, and that was a big one after we had kind of got all the money in the bank from our capital campaign. Is when a is when my mom had her first knee replacement, I think. And I just decided, you know, this is a time both of our parents retired within two years. So it was, it was a bigger operation where I just, I needed to focus on the farm and focus on my family, because I had been, you know, raising free, raising four kids, kind of on my own, managing a senior care facility on the side, besides Foundation director, just a lot of different things. I still am involved with that. And president of our Kiwanis Club, which is a civic organization that provides scholarships to our seniors. It runs a local food pantry. I'm on the subsidized housing board for senior citizens. We have 52 apartments. And then I chair a community foundation. And then I work with our local historical society. We have a five course prime rib meal with wine pairings at a Victorian Christmas. And so I do all the tickets for
Scott Benner 18:45
that. When's the last time you were bored?
Unknown Speaker 18:48
I keep myself busy. Yeah, no kidding, I
Scott Benner 18:51
don't get bored either. And I wonder sometimes I hear people all the time talk about like, I was bored today. I didn't know what to do, or I just hung out. I'm like, Oh my God. I think that would be upsetting to me. As a matter of fact, everyone left a few weeks ago, and I made this big pronouncement to myself. I was like, I'm not gonna do anything today. It was Saturday. I was like, I'm gonna watch a baseball game. I'm gonna get lunch, like I was gonna and by like, three o'clock in the afternoon, I started getting uncomfortable. I was like, What am I doing? Like, there's so many things that could be accomplishing, right? I don't think I come off that way, but I feel like that. And you were, I mean, are you unless there's, like, I don't know, murder a couple of people at college and you're trying to keep the voices quiet or something like that, what's going on exactly? Do you think? Why do you think you are are wired this way? Is my question.
Speaker 1 19:34
I was born with a servant heart. That's all I can say. Really, I'm a very empathetic person, which is good in some situations and not in other situations, I guess. But I just, my calling is to help people, and I guess that's why I really wanted to touch a little bit on advocacy work. So it's just, I guess that's just who I am, and I've accepted that. And I, when I have spare time, it's, I don't feel it should be wasted, although trust. Me, I do get bored sometimes, and I can't think of something to do, and then I feel guilty for even thinking, Gosh, should I sit down and read for 30 minutes? No, I can't do that. I have this to do. But I think, you know, all of us have our ups and downs and whatnot, but I guess this is just Yeah.
Scott Benner 20:15
I believe some people hear that and think, oh, you know that, poor woman, she has no downtime. And then there are other people who think the way you do that are like, no, no, this is great. Like, I don't feel like, like you don't feel like you're working, right? No, no, I never, yeah, I never feel like I'm working.
Speaker 1 20:32
Well, it's funny, because, you know, for all of my life, my kids grew up, my office was in a senior apartment complex. It was a congregate housing and so I was manager of that, and that's where the Foundation office was, and it's a beautiful place. It's not connected to our medical facility, but it was initiated by our foundation and medical facility. And my kids grew up with knowing, oh, mom's gotta go. There's, you know, have somebody moving in. So we, I mowed the lawn there. I did snow removal at that time. I also did all of the bookkeeping for economic development group help promote housing in town. I mean, they just, you know, use the skills that you have. And anyway, my You're
Scott Benner 21:12
the living embodiment of that joke about, like, sticking a feather duster up your ass while you're running around the house. You can do one other thing while you're doing it. You know what I mean?
Speaker 1 21:22
Like, I think my kids would, well, they have shared the memes about the mom cleaning before Christmas. And I think the funniest one was, everybody's sitting in the house at Christmas. Obviously, we have snow here waiting for me. You know, I've done the cooking, the cleaning, I've wrapped all the presents. You know, they're just waiting to open presents, and I'm out shoveling the driveway. And by any means, my husband is he work. He gets up at 530 he, you know, we don't have animals on our farm. We're a small grain farm. Gets up at 530 and goes, gets down with work at 830 he's, you know, he'll say, I work as hard as him, but that's not true. But anyway, we get in and then I open my present, and I can't remember. It was a sign that I had for years, and it was something about, Nobody works harder than me, or thanks for watching me. So I don't know it was just, it was some meme, but, and my kids like to say, you know, I turn into that monster. Peck I bear room. I'll never forget, I never forget telling my son, you know, in the laundry room, if you don't get your stuff out of here, I'm going to have a heart attack
Scott Benner 22:23
right now. I was gonna say, do you think you have anxiety, or is it just from growing up on a farm that you just work focused?
Speaker 1 22:29
You know, I was involved growing up, I've put to the extent it was so different in that lifestyle. Growing up, we didn't have the scale of farms. Farms have grown considerably just from economics and being able to make things work. You know, a small farmer just can't make the numbers work. You know, you can't have hobby farms, really and and make a living at it. So just the scale of it, it was, it was really different. You know, for me, with my husband being so busy, I don't remember my dad being gone as much as him. So it was, it was, it was different raising kids like, oh, Dad's not home. That was always hard. It's like, Daddy will be home later. It's okay. You know, I had these little kids that just, yeah, love their dad and they don't see them. His hard work pays off, you know, in the end, too, because this lifestyle is one that supports generations. Do you think
Scott Benner 23:17
any of the kids will keep the farm going? I can't even get Arden to decide to like be on the podcast more often. So I'm wondering how you would accomplish that
Speaker 1 23:25
too early to tell but for us, we're fortunate that my husband, when we started dating, he had a brother that was born. So that was new to me, because I grew up in a predominantly Protestant, you know, community, and my husband's family's Catholic, and he's my husband's the oldest of eight, and so when we started dating, he, you know, a couple weeks later, when he asked me to prom, he's like, Oh, I just had a baby brother. I'm like, Oh, okay. And it's been awesome, because I love kids. And he started farming. So the transition for us is him at this point, if our kids want to farm, you know, maybe there's an opportunity for them. But,
Scott Benner 24:01
oh, so he's 17 years younger than your husband. Maybe
Speaker 1 24:04
he's 36 right now. Wow, that's us, which is kind of crazy, because, you know, I saw something on an ad on whatever, and it was cocktail came out with starring com Tom Cruise. And what is it? July 26 1988 I'm like, I know that because that was the first movie that my husband and I went to. It was 36 years ago, cocktail.
Scott Benner 24:24
So wow, look at you showing your age. Yeah, that's crazy. I haven't
Speaker 1 24:29
gotten carded in a while, so I can't, you know, use that, but you know, it is what it is. I guess I woke up and I'm alive today. So we have to go with that.
Scott Benner 24:38
We're gonna keep going. Your mother in law, her uterus fell out in what year, 96 like, when did she just like, I don't know. How many kids did she make? Eight? Well,
Speaker 1 24:48
yes, eight. That eight that I knew, Oh my gosh. Well, I shouldn't say eight that I knew they had. They did have a son that died early. Oh, I
Scott Benner 24:56
say but oh my gosh, yeah, I have couple weird. Little questions. So this one's just thinking in my head so long, and it's none of my business. So you can just tell me to, you know, go to hell if you don't want to answer it. But how does a 39 year old woman die? Is that like tragedy or an accident or an
Speaker 1 25:13
autopsy wasn't performed and she died in her sleep? She had complications from, I wouldn't say complications. It wasn't from diabetes, her blood sugar was normal that we
Scott Benner 25:22
know of. There's no way you don't know. How about that? No, that's really something like
Speaker 1 25:25
my great uncle. So I talk about him or not my great uncle. I'm sorry, my uncle. So my dad had a lot of tragedy at a young age. He had a brother that was died tragically in a farm accident at 14, and then his father passed away a couple years later. So my dad at 19, kind of had to help guide and support his mother, who had a four year old at home still. So that Uncle again, you know, my grandma had him later in life. He was more like a cousin than an uncle because he was, you know, closer in age to us. He laid onset with diabetes. And this was the 80s. They didn't have Juicebox back then, Scott, it was, we knew insulin did something to food, but Were you counting sugar? Were you counting carbs? What were you counting? I just look back now, and I was trying to help my uncle get a CGM, just to help train him and teach him and and trying to get, you know, he's trying to get disability, and he just, you know, we think about the lifelong complications of missing work and not keeping a job and and whatnot. So it was, it was hard to watch, and I didn't truly understand the effects of type one until I look back at his life. Because ultimately, what led to his he had neuropathy from head to toe, literally in his intestines, in his hands, his feet, everything. And he suffered a massive heart attack, went in from went into diabetes coma, suffered a massive heart attack, and passed away in a nursing home at the age of 59 and it was obviously many, many years leading up to that. But, you know, you just, did he test? I just remember him always carrying, you know, I suppose it was a syringe, a vial, of insulin. I don't know if he tested, maybe, maybe not. I wouldn't say my mom was hesitant to my dad getting a glucose, you know, monitor, we have the information. Let's use it, you know. Oh, well, they're, you know, you just, it's a snapshot of time, but now, when you have the data and you can see the trends and and that's why I'm fighting so hard, I don't think people really understand other than people in our arena, why I work so hard to keep our daughter healthy, because I don't want the bad things to happen to her later in life. I want her to have the tools that she knows so she can go on to live a long and healthy life, and now we have the information, so we should be using it.
Scott Benner 27:46
Your daughter's diagnosed, how much of that memory floods to you? I
Speaker 1 27:50
think, like many stories, you start thinking, Is it cancer or is it diabetes, without even verbalizing it. So I had the normal, took my daughter, and I wouldn't say normal, but it's a common theme along a lot of people. I had taken her into the emergency. The emergency room and she had lost a significant amount of weight, and the provider, you know, she's just at that age, she's starting to lose weight and look at herself in the mirror more and like, no, 10 pounds in a month. No, she's seven. That's like, happens when they get their periods and they're like,
Scott Benner 28:18
10. Doctor thought that your seven year old looked in the mirror and thought, I need to drop 10 this month. It wasn't that interesting, okay, but go ahead, I'm sorry.
Speaker 1 28:25
It's just one of those things, you know. So anyways, and she was just sick. And yes, like I said, the lady at the church who we had frozen orange juice, my uncle who, you know, had just all of the people. And then my sister in law, you know, my daughter did get to know her aunt that suffered with type one diabetes, and she didn't have, she had access to a pump, but not to a glucose monitor, you know, insurance and all this and that. And so she would talk to our daughter, Nina, talk to her about what's your care and what are they telling you? And you know, to kind of doing comparison, and I know that's weighs heavy on Nina's heart. Sometimes her aunt didn't have what she had. Maybe we're self employed, obviously, so we don't have access to insurance, other than paying for our own commercial plans that are available in our state of North Dakota. And North Dakota only has three major carriers, and obviously it's about your risk pool, right? So we have not a big risk pool, and we don't have a lot of options. We pay a lot of money for our family to have insurance. We've just stuck with it because it's what gives her her glucose monitor, it what gives her her pump supplies, a part of the advocacy for us. It sometimes feels self serving, but you know, it's everybody needs access to insulin. Everybody needs affordable insulin. And when I went in to fill her prescription, this wasn't the first time that I got in. It was $1,100 for four months, or excuse me, four weeks supply of insulin. Yeah. So that's what we were paying for insulin, and I can touch on that a little bit later. But getting back to Nina and her diagnosis, she was born, you know, the mom guilt, so you tried to psycho analyze, like, what happened here? She was born prematurely because I had chronic kidney stones. I was externally begged, and they had to take her early. So about five weeks early, I didn't get to hear that first beautiful cry from the baby. She went into the ICU for a month, then she's brought home, and she really was a healthy baby. At five years old, she had strep throat inflammation, which I had three kids that had their tonsils removed. So you know, it's just ear earaches and sore throats. It's just stuff that happens with kids. But when she was five, she had this bizarre thing. And I went back on her medical notes just to see, you know, when you ask about triggers, where do you think Angie? Did it happen? Well, maybe genetically, but she had swollen lymph nodes around her entire abdomen, and she could hardly sit up or lay down, and she was moaning and groaning, and it something that her body was fighting off. Didn't really have any specific diagnosis for what it was. And then I look at the blood work at the time, and it shows her, her blood glucose level was 110 and, you know, I'm like, why didn't they see it then? But again, that was just a snippet in time. So then fast forward, two years later. Here we are, right ear infection, respiratory infection in the ER, oh, just, you know, generalized abdomen pain. And looking in the mirror, she's lost 10 pounds in a couple of months, and and then you start going, okay, thirsty, weight loss, headaches, belly pain. And I just remember sitting at softball and just it was hot, just saying, Mama, I just, I can't today, Mama. I'm just, I don't feel good. And then I, like, looked in her throat, and I saw something on her tonsil. And was like, this is weird. So we made another doctor's appointment, and she looked her over and she said, Oh, that's a tonsil stone. I'm like, that's what it is. This girl's got to get her tonsils out. She's sick. I figured it out. So, yeah, I figured it out. Yeah. Anyways, so that's the first time I heard about tonsil stone, but our physician's assistant that I you know, I know everybody here. Obviously, I worked at the medical center with everybody, and growing up with some of them, and have known forever. But anyway, she said, let's do some lab work. And we were at an off site location clinic, not one right here, just a few miles away. But okay, so Nina said, I want to do it back back in town. So we did it there, and then went to see my father in law, who's in the hospital. That's why I remember exactly he had gotten his diagnosis. We did labs, and then went to see grandpa. And then we got home, and I got a call from this physician's assistant, and you don't get a lot. She said, I'm going to come out. We need to review her labs. How many times do you get a house call coming
Scott Benner 32:39
out to your house. Yeah, wow, yeah. Did that scare the shit out of you? You
Speaker 1 32:44
said your life's going to change and it'll be okay. And so, yeah, she's like, Yeah. She said that on the phone too. Yeah.
Scott Benner 32:51
Oh, you got the weight while she got to your house to figure out how your life was going to change. I don't remember
Speaker 1 32:56
if she told me over the phone. Oh, okay, all right. She probably, probably did. No, I don't, I don't remember, but she came out with the papers showing me. And I think one of the primary reasons, well, obviously, she's a compassionate individual, but I think one of the reasons that she did is it touched her personally. I think because her roommate in college was a type one diabetic, so she lived directly with somebody and understood the, you know, the gravity of it. So anyway, so we're always very thankful for her, you know, for going that extra step and and whatnot. So then in North Dakota, I'm not familiar with all of the care, but with our, one of our major providers, one of our major medical systems, which is just Fargo, not the movie, nothing like that, but the wood chipper is at our tourism center. If anybody wants to come to Fargo, North Dakota, Cohen brothers movie. It's terrible. I don't talk like that. I don't think, but our major hospital is there. So that's where we drove and found out that our blood sugar was 600 and our a 1c was 12. Oh, and then they and the provider had said, well, they have three pediatric endocrinologists, so we're really fortunate in the eight years of her care that we have. Two of those providers are female and have type one themselves and another provider. So we've just had phenomenal care. So we're really lucky in that sense. You know, they say when you with an A, 1c, like that, she's had it a while, and you're like, huh, how did we not see
Scott Benner 34:22
it? Angela, you saw something. You just couldn't figure out what it was. Apparently,
Speaker 1 34:26
I was really busy to see everything, because at her son's high school graduation party, Nina admitted she's like, Well, yeah, Mom, I had six sprites and I had like, 10 cupcakes. Like, Oh, why did nobody count those
Scott Benner 34:40
you have a farm and four kids and a husband that works 18 hours a day. And I mean, do you feel badly about it still?
Speaker 1 34:49
There's nothing that I can have. There's nothing I could have done to prevent it.
Scott Benner 34:53
No, I know. But does it? It doesn't weigh on you? Or did you have to talk yourself out of it weighing on you? I
Speaker 1 34:59
probably talked. Myself out of it a long time ago, because you don't have time, right? Yeah, well, you don't, I mean, no, but mentally, I mean, you have to live in the moment. And just a little bit, we didn't get a glucose monitor. You know, this is back in the day before they gave them to you when you were first diagnosed. So I slept by her side. My husband doesn't remember this, but I slept on the floor in her room and finger sticked her every two, three hours, 24 hours a day. And her honeymoon lasted in a year, and it was rough at first, because, you know, with that honeymoon, you don't know when they're going to spurt out some insulin, so she'd have some bad lows. And I remember she was, I think it was 32 I didn't think your monitor could go below 40, but I remember 32 and just kind of holding her, and she just kind of looked at me with her little eyes, said, Mama, just let me go. I can't do this. And it's like, oh yeah, no, I'm not letting you go. We'll be okay, you know. So we've had a lot of experience. I
Scott Benner 35:57
have more context with that. Let me go. What was she saying? I
Speaker 1 36:01
have no she idea she was seven. I don't think she has a clue what she was saying. She probably just wanted to say, let me go to sleep. Oh, no, but not my brain, not my brain. You
Scott Benner 36:12
heard. Let me drift into the ether. It'll be okay. I'll see you in heaven. Yeah, no. Oh, okay.
Speaker 1 36:17
Jesus. What? Don't look up dead in bed.
Scott Benner 36:20
No, I know what that is. Yeah, okay, yeah, did that? How long did that panic you for that idea? I've
Speaker 1 36:27
had physical therapy. I have degenerative disease, like my dad and some other things. And my physical therapist, I listened to another podcast about chronic pain, and she said, You are in a constant pattern of fight or flight. And I said, Yes, I think I am. So I'm working on that. But I think with this disease, knowing that I am a primary caregiver, you do feel like you're trying to keep them alive, yeah,
Scott Benner 36:50
but let me tell you something too. You also have, you have auto immune stuff, right? And anxiety, like I see with a lot of people with auto immune, the inflammation in general, even, like you said earlier, you said, like, I get a lot of kidney stones. And I thought, That's not autoimmune, but I looked into it. We never got back to it. But it could be something like hyper parathyroidism could generate, right?
Speaker 1 37:15
I have done all of the work up at the Mayo Clinic. I've had my kidney stones actually analyzed, and mine are from lack of I'm supposed to drink two gallons of water a day, I think, just
Scott Benner 37:26
not hydrated enough for your for your body, because you have too much calcium. Yes,
Speaker 1 37:30
interesting, that is correct, huh? I don't have Diet Coke kidney stones, so I'm not like drinking tons and tons of sodium, where I'm creating them myself. No, it's just for me having a lack of fluids. I can't remember where we're at, but Angel, it's
Scott Benner 37:43
okay, because I'm gonna pivot you. That's okay. Okay, all right, because you are, I don't know if you're aware of this or not. You're chatty. I am, yeah, which is fantastic for a podcast, but I don't want to miss the things that you want to talk about, either. So I think you went over how important you think advocacy is. But what about looping? You want to talk about looping as well.
Speaker 1 38:03
Yeah. So just for the glucose monitor, we didn't get it covered for, I think, like three months to somewhere on that time frame. So we got the glucose monitor, then we had to wait six months to get a pump. So we waited six months to get a pump. That was what she wrote in our local paper for Christmas. Is all she wanted for Christmas, was a pump. Well, she didn't get it, but her birthday was January 6, then she got it then, so we had the Omnipod. I think everybody has this. Well, maybe not. Things have changed dramatically, but she got the pump, and we're like, yay. And you're like, what the Googles monitor doesn't like? Put in the blood sugar into the I swear that control for the Omnipod, the original one feels like a game of Pong. You remember that growing up? It's just so archaic.
Scott Benner 38:44
It was something, wasn't it? Yeah.
Speaker 1 38:47
Well, so anyway, she was on the Omnipod for however, and I had heard about this do it yourself, hacking, you know, the insulin pump or whatever. And at that time that I was reading the articles about it. It was getting a solder gun and welding your own right, like link, this is before the makers of Riley link. I think, Oh, I remember that, yep. And I'm just like, Oh, hell no. It's that's not in my I probably could ask my husband, but I'm I'm not getting a motherboard and trying to that's just not in my arena. I came back to it in the fall and started thinking about it, and then COVID kind of hit. So I had been working on it and reading, you know, the loop docs. And so I decided, you know, I'm going to jump in. And then COVID hit. And was like, this is the perfect time to do some testing. And so got in a few Juicebox pod zoom with everybody. And, you know, I joined So Cal loopers and got to know everybody there, and if she has been looping now for over four years, and it's just been amazing, you can't even understand people don't realize. I'll never forget. It's one of those memories is burned into your mind. I don't remember if it's the first night. First a week after we started looping, but I went to bed and I slept for six hours. It actually held, you know, so our numbers were fairly good in her system. But I woke up and went, huh? I hadn't slept like New Years. I had,
Scott Benner 40:17
was it like a light went off? You're like, oh my god, I might not die. This is gonna be fantastic. Yeah, hey, weren't those zooms great during COVID? I did that. It just felt like everybody needed a place to go. And I know that wasn't like, a unique thing. A lot of places tried it, you know, a lot of orgs and like, Oh, we're gonna do live zooms. But mine really took off like we were doing, like, 300 people at a shot during COVID. And, I mean, there were just screens and screens of faces, just chatting about diabetes. Is that when you found the podcast?
Speaker 1 40:46
No, I heard about the podcast early on, actually, kind of getting back to advocacy and whatnot. But when she was diagnosed a couple of things, I found a Facebook group, a local Facebook group by a mom who started it, who didn't want anybody to feel alone, and she actually has become one of my very best friends. She's in Minnesota, so she's done advocacy work with the Alex Smith insulin affordability act in Minnesota. I'm on the North Dakota side, but we're, you know, a state divided by a river is all anyway. She sent a video. I was freaking out, because you remember the G, g5, yeah, that horrible plunge. I didn't do it in the doctor's office, and I'm 50 minutes away, and I wanted to have it, but I'm freaking out because I didn't know how to put it on her. And you had to do this first, and then that and plunge it and yada yada. Anyways, she sent a video, and she's like, it'll be okay. It'll be okay. This is how you can do it. You know, she, she helped me there. And of course, since I'm a talker, I lost my train of thought, no, you
Scott Benner 41:46
want me to help you maybe. How did you find the podcast? Was it the Facebook? No, I met a friend. Go ahead. Thank you.
Speaker 1 41:53
And then, because yes, thank you for that. I need you in my life more often. Scott, no, not really.
Scott Benner 41:59
Am I in your life too much. Angela, lately, yes, because I've
Speaker 1 42:03
been walking two miles every night, listening to a podcast every night, I'm really trying to hone in here and catch up. Okay, but no, it was the important thing for me, was for Nina to find somebody else that had, you know, had the same disease, that somebody looked like her, felt like her. And so I went to a mom's group, and we were sitting there, and we weren't on a pump at this point, and they started talking about the pumps and how you figure out your basal rates. And my eyes started to roll back, because at that time, we were on traceba and short acting, I don't know what you're talking about. And and then one of them said, well, actually, they had started working with Jenny, or not Jenny, I don't think, but with Integrated Diabetes. Yeah, they took it upon themselves to do that. Said that, you know, we learned about it on the juice basal podcast. And so that's what we're doing. And so, you know, something sticks somewhere for somebody, right? And so I'm like, Huh? Well, that's interesting. So then I started, you know, listening to it off and on. And so that's where, you know, I I started, I haven't listened to all 1600 episodes. Well,
Scott Benner 43:04
there's only 1200 don't make me sound like a lunatic. Angela, okay, well,
Speaker 1 43:07
I think you were like, at 300 when I first started listening, you know. So it's just, yeah, it's, it's amazing, you know. So kind of got it on it early on. This looping community is just amazing, and it is just mind blowing. And I think that was my tag along to you when I emailed you about being on the podcast is growing up in the 70s with bionic woman. You know, there's just that moment where your your child's body is taken over by electronics. It's a choice for certain, but it's a choice you make to keep them alive, to give them the best life forward. And so she had her CGM on one arm and her Omnipod on the other arm. And I actually, like, I had the Bionic Woman doll, and I was thinking, this is really cool, and everything. Like, God, I remember on her arms, you could plug in stuff and do that. And then I looked at the one online, like, I should get one of these and give it to him. Like, no, I don't think so, because I think you can take part of her face off, and, no, I don't think so. But Angela,
Scott Benner 44:04
I just want to prove what a television kid I was, so the bionic woman who was in, like the CIA, you know, like, you know, for real, but she had a job. Remember what her job was? No, was she not a college professor, but like a tennis pro too, or something like that. Ah,
Speaker 1 44:24
that's tennis is, yeah, visually, there's a lot of I can pick. I can picture Linda Wagner and I can picture the million dollar man too.
Scott Benner 44:32
$6 million Man, don't short him. Okay, sorry, that's Lee Majors. He was also the fall guy. Okay, yes, and
Unknown Speaker 44:41
Knight Rider. Oh, there's, yeah,
Scott Benner 44:43
that whole time of those TV shows is crazy. But yeah, I remember one of the feats of strength was her crushing a tennis ball. Do you remember that in the opening Yeah? How ridiculous that idea is. Like, oh, she broke a tennis ball. Does that mean she's that?
Speaker 1 44:56
Yeah? All I can think of was those ports on her arms. Yeah? Interlinks. That's just all that came but so kind of just getting back to advocacy a little bit. I'm just very I'm very proud. And I think my tagline to you about advocacy is we got in early because another mom whose daughter had been to the children's Congress for JDRF, which is now T 1d breakthrough, it come back and was working on the strategies for getting insulin affordability. Because that was a hot topic. You know, eight years ago, we've been through three sessions. We've had a concurrent resolution, a failed bill, and then last, last legislative session, we were able to get Senate Bill 2140, passed in the state of North Dakota, because of the laws and the mandates, we weren't able to get it for everybody on all plans, but for state employees for two years, kind of as a study, and then we'll be going back out. But Nina has been directly involved with this advocacy work with me since that time. The first bill that I helped with, I don't remember the number, was to get people that were on Medicaid a CGM, and so that was expanded for people. So just trying to get some of this technology, but insulin affordability, you know, there's just a lot of thing anytime you can get in front of anybody, education is always, obviously the number one thing that we have to do, and we continually do, is just educating people on the disease. So they're, they understand, like law enforcement thinking that your child is drunk. No, they're not drunk. They have low blood sugars, you know, just so there's just a lot of any kind, anytime you can do education and advocacy is good. But for her, she has presented at when she was a member of our 4h club at her school. She's gone to diabetes camp. She puts together care packages for kids, and she mentors young people that are diagnosed with type one diabetes and will be a counselor at camp. She hand wrote a letter to our our governor, who ran for president, Governor Burgum, gave it to him at our district meeting and asked him to please make insulin affordable for everybody, because that's something that really weighs on her mind, is when she ages off of our insurance. Yeah, you know, will she be able? She's like Mom, I think I want to be this. And I looked at her and I said, Sure,
Scott Benner 47:04
you don't want a job with a fortune 500 company that has really great insurance.
Speaker 1 47:08
Are you sure? Yeah, that's, that's pretty much, you know what we've talked about. And we just say we're working harder for you to make things better. And hopefully it'll be, you know, better than and but she's been an advocate with the American Diabetes Association for, you know, a major giving program that happens every year in the state, and she was actually on the House floor and was able to push go for the vote to pass. It's been a really, really neat, I don't think that all kids have been able to have that experience, but she is just really out there and not afraid to talk. And then in our school, we have a program called close up, which allows you to look at the government close up. And so are we take kids that are juniors and seniors out to Washington, DC every two, three years, and it's a whole program called close up. I'm
Scott Benner 47:55
going to call this episode Angela makes you look lazy. And that's, that's going to be, that's going to be the title people are gonna be like, Oh my God. Like, you're either making this up or you're super person. You know what I'm saying? No, no, no, I don't think you're making it up. But like, still, I can't get my head wrapped around. Like, Arden applied for children's Congress. They turned her down. So, like, but Nina,
Speaker 1 48:16
hopefully we're going to apply this fall, and I'm really hoping, because it's her last chance to get out there. But if we don't, we'll be going the next year, or maybe it's the same year, actually, for close up, because, yeah, when she's a junior, she'll be able to go to close up and do this as well. But when I was out there, that is when the Senate passed, I can't remember now, Congress was looking at insulin affordability, and then, of case, of course, you know, everything fell apart, and here we are. We haven't gotten anywhere federally, and we won't, just because of the environment that we're on right now with an election year and, you know, getting things done. But we feel pretty proud of the work that we've been able to do, and we'll be going back out to try and get them to get this affordable insulin. Our actual bill was copied off of Colorado's bill, and what it does is provide insulin for $25 for 30 days, as well as basic insulin supplies. And there was a lot of education. And right now, capitalism is something that we hear a lot about in our state, and they don't, like, you know, necessarily, like having some people have opportunities for a reduction of their medicine, I was going
Scott Benner 49:24
to ask, how does it work? Like, it's not $25 for like, every living, breathing person, right? So what is it who qualifies for it right
Speaker 1 49:32
now, people that are on the state man, state plan, so that would be your legislators, and any North Dakota employment, public employment, Retirement System employee. So whoever North COVID. So whoever is part of that plan, it could be whoever opts into that. So it could be, you know, your state employees, most schools have gone to self funding. Their own plans, state employees and other people like that, which includes the legislators. But there's a lot. Of things that we learned, and there's a lot of things that we just continue to educate on. They didn't want to Well, you know, some of it's HIPAA, but the data is there. At the time we were pushing for it said, Well, there's only 700 insulin dependent people. The second time we were out there that, you know, it's only going to affect 700 people. Oh, who cares? 700 people can have access to insulin,
Scott Benner 50:22
right? And if that could spread from state to state and it, I mean, if it's the least fortunate of the of every state that can't afford it, then that's really fantastic, because you got to imagine, people with insurance are probably not paying that much more for it to begin with. I mean, they're paying for their insurance as well. But, I mean, like out of pocket, is that not correct? Well,
Speaker 1 50:43
and for us, here's the crux that we have. So I just want to touch on one other point. So we had been working with drafting the bill before it was actually introduced and hitting the floor, so there was some high level involvement in committee work done before the bill could be introduced in the regular session, because we can get every other year. And so there's a lot of things that we were able to work with legislators on, but some things that we learned were that the rebates that the insulin company or the pharmacy benefit managers give to the insurance companies, they use to spread across all the premiums. And so it was like $2 million that was being subsidizing the premiums for the plans. And it's like, shouldn't we be getting that? Because we're being the ones prescribed that. So there were some things that, just like on the federal level, you know, things that come to light that you're trying to advocate and educate people. So when people say, Well, you're making our insurance plans go up. No, we're subsidizing your policy. Because these insurance companies did have a little bit of a heads up that we were working on this. I went out to give testimony in January about, you know, this bill. I went to the pharmacy to fill my daughter's insulin. It was $5 it used to be $1,100 but it was $5 because this insurance company had proactively been working on getting insulin, or some of the top top tier drugs, more affordable. So it's just kind of interesting that that happened. But for our particular plan, we have a high deductible plan, so we pay, I really don't want to talk numbers, but a lot, a butt load of money in premium, over $2,000 a month. How many
Scott Benner 52:21
bags of grain is it? Let's think of it that way, a lot, right? But
Speaker 1 52:26
then we have a high deductible plan. So then what happens is, you pay the premium every month, but then we also have a high deductible plan. So we have $5 insulin, but we have to pay, you know, when I walk into the pharmacy, we have to pay the first $5,000 for any of the glucose monitors and insulin pumps, yeah, diabetes supplies. So you know, there's just a lot of education, and very thankful that because she has type one diabetes and that we have healthcare environment right now that allows a person with this pre existing condition to have access to to insurance, I have a very happy and healthy daughter, and I'm very, very, I'm so, I'm so glad that we have, you know, we're able to have access for her, but there's so many people. We did have an instance in our, you know, we network with people. We have over 1000 people in our Facebook group that's for advocacy resources and support. And we're just everyday people. We're moms, but a lot of us have backgrounds. So the primary people that were working on the insulin bill in North Dakota was me, another mom, as I said, whose daughter had gone to children's Congress. And then we had a another mom who was a lawyer, and we had, there was a core group of about six to eight of us that were working on this, with a couple of us being the most vocal you know, on the news and whatnot. But change can happen, and I just want people to get to know who your local representatives are, because it's about making contacts. I mean, I have all three of my district members cell phone numbers well, and most of them are published on the state site. So I've got our website as a regular tab that's always open, and it'll be an election year this year. So a lot is going to change the landscape, but there's just a lot of things that you can do where people it comes down to people's stories, talking to people, making them understand, because everybody has somebody with diabetes in their family. How
Scott Benner 54:19
would you say that people could go about getting involved locally if they wanted to? I
Speaker 1 54:25
think, as just a everyday citizen, what you need to do is finding out, well, vote, get to know who you're voting for. Vote and find out what committees do they work on. Because, you know, they all work on different committees. One of mine is on education and infrastructure still is going to vote on the bill, and they're in the Senate, and because we have one senator, two House of Representatives in our in our state, so it's opposite on the federal level for us, we've had meetings with our senators as well. Very frustrating. Things don't move fast, and. Don't feel like you're really being heard, but we continue to have those meetings with our congressmen. The way you can get involved is just don't be afraid to tell your story. I think everybody thinks they have to have all these statistics in one statistic that I'm going to throw out there, because I think it shocked a number of people when we went out because Governor Burgum had announced his candidacy for presidency, we didn't get our lovely little photo op after the bill had passed, because he became very busy. So it took us almost a year to get that photo op, and we were sitting around, not with him in the room, but with some other people, kind of waiting for him to, you know, arrive and and whatnot. And the reporters were there and him talking, and Governor Burgum has talked a lot about his wife's advocacy in their work with addiction, which is very important cause as well. Don't ever pit cancer against diabetes, against addiction, that affects all of us in many different ways. But the thing that's very frustrating is people that overdose have access to narcon and clean needles. People with type one diabetes cannot get access to a life saving drug, and they can't even get needles unless they go to a pharmacy that's open 24 hours a day and get it behind the counter. Because we've had all of us, we've forgotten supplies where we've needed to have a needle just to load our pump, kids, pumps or or whatever, and you can't get them because it has to come from a pharmacist. Angela, can
Scott Benner 56:19
I tell you, I first want to say I've incredibly enjoyed our conversation, and I want to keep having it, and I respect everything you're saying. I don't understand that argument. I don't either. I don't understand why someone would say we need a thing. Somebody else is getting the thing they need. I'm mad at them because we don't have it too like I don't. I honestly, I can't wrap my head around the narcon argument. But, I mean, if you have a perspective on it that you want to share, I want to hear it. Well, I don't get trying to make hay out of somebody else's problem. Statistically,
Speaker 1 56:51
there's as many over there's as you know, as I said, the platform has talked about a lot of the deaths from addiction. There's been over $100,000 not dollars. 100,000 deaths from a, you know, overdoses, equally or probably more, because people don't always necessarily say that, you know, only die from complications, but diabetes, there's equal amounts of people dying from diabetes. It's just, we have to be able to it's not pitting one thing against the other. It's making people understand that there are other diseases that are out there that are very similar access to medication that is needed, yeah,
Scott Benner 57:32
and so saying, if you're going to do it for one person, why are we not doing it for everybody? Is that right?
Speaker 1 57:36
Right? It had to have been somebody that pushed to get that, yeah, you know, I don't know. I don't know, and I don't care, right? Because it's just, it should be accessible for everybody, everybody, if you can get clean, you know, for everybody. And that's what it's about, is we want people to live happy, healthy lives, regardless of who you are, what you are, where you are. That's just, you know, basic human thing for me, I guess,
Scott Benner 58:01
you know, there was a time where you didn't need a prescription for insulin. You could just go into the pharmacy and buy it, and you needed the prescription for the needles. And that was in the like, late 80s or early 90s. You could still do that. I mean, in the end, what happened, if I had to guess, is that, you know, oding and addiction became such a big story in the country that people, you know, like you, except for over you know, except they're more focused on probably, they probably had family members who OD and they were trying to get laws passed around that they probably had an easier time pushing it through the the political system because it was out and the Politicians probably wanted to be seen as supporting it. Like, you know what I mean? Like it said, It sounds crazy, but like, diabetes needs, like, enough of that. And I think that's what you're saying too. Like, if people got out there and told their stories to local politicians, maybe they'd hear about it enough that they'd be willing to do something the next time something rolled around. Is that the idea?
Speaker 1 58:58
Well, it's just, it's a part of Preventative Medicine too, you know, we're going to have less ambulance calls where it's it's such a burden on the health care system for all the complications that come from lack of insulin, you know, and, and, yes, what you're saying, I guess, to generalize, what I'm, you know, trying to say, too. We have a rural health care system and an ambulance, an ambulance ride is very expensive. You know, it's we just need people to get involved and tell their stories. And a very good example of that is the Alex unfortunately, it takes somebody passing sometimes, and in Minnesota, the Alex Smith insulin affordability Act that allows people to have access to insulin was because a young man and I saw this post actually happening on the Juicebox Podcast, Facebook group, saying, I don't know if this is true or not, and is this real? And it's yes, it's real. It's my neighbor. Yeah, right next door. He died. He didn't want to ask his mom for help. And I think that comes down to shame. You know, oftentimes, right, there is a shame factor. People don't say, Well, I can't afford my insulin. Well, why don't you work another job? Well, I'm trying to work a job, but I. I can't, because, you know, there's just so many things. And let's just get shame out of the way. Is
Scott Benner 1:00:05
Alex's story, the one where he he moved to a new location, is that, right? And then he got there, no, that's not him.
Speaker 1 1:00:11
He's a 26 year old that didn't have health insurance, and he had aged off of his moms, and he just, you know, said, Oh no, I'm okay. I'm okay. And was waiting to, I think, get health insurance. But I, you know, I don't remember the specifics, but it's less than a week with DKA, yeah, you know, for somebody to pass. And he'd been rationing all along so, you know, as a slower progression there. But so she's been very vocal his mom and pay or die, is the video that you can watch about it. You know, it does happen. It's out there. And we had an instance not that long ago of somebody, you know, in our group saying, I'm out of insulin. I need insulin. They'd already been to the, er, I'm trying to get on, you know, trying to get some help. It happens, yeah,
Scott Benner 1:00:58
no, I've seen the, I mean, I've seen those posts over the years a number of times somebody's just like, I don't have insulin. And then people, you know, try to give them the best advice they can, but oftentimes it ends up being someone who drives out and hands them a vial of insulin,
Speaker 1 1:01:12
you know, yeah. And the thing that's so hard, you know, in our advocacy work is, which really ticked me off in the last session, was not all insulin is created equal. Well, why can't you just go to Walmart? Why can't you do this? And it's like, you know, and what I had said in one of my arguments was, if you want to, if your loved one is diagnosed with cancer, how about you go get a bag of chemo that was developed 30 years ago? Yeah. Is that good enough for you? Yeah, that's
Scott Benner 1:01:39
that ends up being so
Unknown Speaker 1:01:40
let's do it past that. Yeah,
Scott Benner 1:01:42
right, right. No, I mean, and that person should be able to just walk into a pharmacist, yeah, and say, I'm a type one diabetic. I'm out of insulin, I'm in medical trouble. Like, help me, instead of, like, having to go to Facebook and say to people I don't know what to do, or being afraid to tell your mom, or, you know, any other of the endless possibilities. It's like
Speaker 1 1:02:03
food. I mean, as I said, I work with in our community, with our food pantry, and there's a lot of shame that comes with it, you know, people think there's a lot of people that abuse the system, you know, but there are a lot of people that are in need and and we know it, and we just, yeah, I
Scott Benner 1:02:16
have to say, there's another argument I don't understand. So I've said this a number of times, like I tried to get in the past, I've tried to get companies to do things that oftentimes their lawyers say they can't do. I've tried to get people to give away pumps. It's hard to do, you know, like it's you can't really give away medical supplies. But at one point, while we were having the conversation, I said, why don't we just make it open to people in a certain financial situation, and they said, well, someone's gonna lie. And I said, Well, isn't that. So that's just the cost of doing business, right? Like, so if you, you know, if you help 1000 people and five people cheat the system, oh, well, like, you know what I mean, like, you help the other people that. But that's another one of those arguments that always stops those conversations. Well, somebody's going to cheat the system like so don't help anybody because of that. That doesn't make sense to me. Either.
Speaker 1 1:03:08
Doesn't make sense. And what the statistics show, I think this was in 20 I can't remember the years if it was 2021, that the Alex Smith insulin bill came into effect. You know, when we were legislating but if you Google it, 459 people in the year 2022, or 2023, 459 people had access to insulin because the element bill that didn't previously. Now, I don't know what the year after that number was, but that's 459 people that needed insulin, people that were put shame aside and put their health first. And so, you know, we have, we have the numbers there. But you know, obviously, you know, I'm, I'm passionate about that. I'm just, I asked, ask a lot of questions. I talk a lot and and, you know, I just for people. Just don't be afraid to share your story. Find your people, and I guess finding the juice boss podcast, finding the Facebook group, you know, finding people in your arena and seeing what you can do to do. When I one of my testimony, when I finished it, what I had said is, if not you, then who? Yeah, because I think we just think, oh, they them. No, somebody will handle it. We're all a part of this. We're all a part of this. If it's not you, we suffer
Scott Benner 1:04:27
a little bit too, because, generally speaking, a lot of the people hearing this are probably, I mean, if you have time to consider your a 1c or your kids a 1c and you have the finances to, you know, get the equipment that you need, and you know you have the time in the middle of the day to, like, go for a walk and listen to a podcast or something like that. Like you very well, might be a person who's not impacted by the cost of insulin, and then, therefore, you might be less apt to be involved in something like this, you know what I mean, because it's not impacting
Speaker 1 1:04:58
or maybe you don't have the time. And. Certainly, everybody's circumstances are different. You know, with my what I was going to say is, when I quit my job, the first thing, you know, I was like, ah, What? What? You know, the kids asked mommy, what's your title? And that was like, that's the crux of it all. Like, what is my title? My mom, no, I don't know my title is right now, but I'm working on it. The other things, if you don't have time, well, then find time with your kids to go to the JDRF events. We have walks. You know, there's a lot of things that you can connect with other people, connecting other people. Just find something to connect with. You know, if you don't have time, you have time to do something, yeah, you know, contribute in whatever way you can, in fashion and no, not everybody can, but if you think you can, I just want to push you a little bit. Yeah,
Scott Benner 1:05:44
go try it, and you can give as little or as much time to it as you can, like, it's not, it wouldn't be bad if it was a couple hours a month or, you know, a couple of days, educate
Speaker 1 1:05:56
yourself on the system, right? You know, just find out. Because I think you have to do that. I mean, you with your own insurance, you just have to be an educated individual. Yeah, well,
Scott Benner 1:06:05
that's it's really wonderful that you're doing, that It seriously is, and that your daughter got involved, and it's all it's lovely. It really is. I tried for years to do stuff with JDRF, and eventually I got to the point where I thought, like, nobody's listening to me anymore. And like, you know, I just tried a different way, and I did this, but in the big it was, I found it really fulfilling. In the beginning, like raising money for the walks, going to out to the talks and stuff like that. I've given a number of JD ref talks. I still do that, but yeah, I think any way you can help,
Speaker 1 1:06:41
yeah, you know. And so many of these, and I think that's part of it, is so many of them in JDRF, too. We've seen it here. These are big organizations. We saw it with the Girl Scouts, you know, when my daughter was in it. They now it's a tri state organization, you know. So it's, there's just less and less people that are in office to support doing the work. So it lands on the volunteers, so it comes back on us. You know, to do a lot of the things for the walks or,
Scott Benner 1:07:07
well, they really scaled back it during COVID, yes,
Speaker 1 1:07:11
yeah. Think everybody did it. It was just the law of numbers. Yeah. You know, it is what it is. So yeah, and maybe we'll have an uptick. I know that even the camps for kids. I've been really pushing hard for just advocating for kids, because we do have, we do raise money for helping subsidize kids to go to diabetes camp with our local camp, but just trying to get kids to go to those camps too. But same thing, you know, it's just the camp directors in charge of three camps in the tri state area. You know, what can we do to help support them, get it out? Because it's, you know, for the benefit of the benefit of the kids, yeah, use the resources that you have. We all have gifts that we can share and see what you can do with that to
Scott Benner 1:07:51
it somehow, make it, make it better. Just, yeah, yeah, incrementally, even just make things better.
Speaker 1 1:07:57
No, it's wonderful. I guess. I guess that's really all that I have you were being a talkative person. I think I've touched on all the things. I
Scott Benner 1:08:03
swear to God, I was like, there was a moment when I was like, this one's great. I'm not really gonna have to do much, and she's so interesting. This is a nice week offer they offer me, but I still got to have a great conversation. Hear a lot of wonderful stuff. There was something you mentioned before we started recording, but you didn't bring it up here. Do you have questions about it, or would you prefer not to talk about it?
Speaker 1 1:08:25
No, I think I'm good. You know, the thing that's that I found out for myself is just a helpful tip, and then I put it on the Facebook group too. Was there are different things over the years that I have wanted to go back on. You know, maybe for me it's iron or female hormones, or maybe it's GLP ones, or, you know, testosterone, or whatever the subject is that you've been having. I was really struggling to find the subject. And when I actually went and searched in the podcast and looked in my library, Ah, there they all are, there was with, yeah, yeah,
Scott Benner 1:08:57
I had a decision to make. I started making it during I've said, I feel like I've said COVID 1000 times today, but like during COVID, I've said this before, but I feel like when it first started, overwhelmingly podcasters thought, Oh, well, people aren't going to be in their cars anymore, and that's where they listen to the podcast. And those people started scaling back on their content. And I was like, I think people are gonna have a lot more time, and I'm gonna make more I had more time, and they had more time. And I thought there's so many other things I'd like to talk about, like, you have no idea. Like, I'll sit down at the beginning of the year and I'll think, like, I want to talk about this, this and this, this year, and I make a list for myself. And now here it is August, and I'm looking at my list, I'm like, I haven't gotten through half of this yet that's with me putting out five episodes a week. So back when I was doing one and two and three, I felt like I'm never gonna get to everything. I used to have this horrible feeling of like, well, if I put too much content out, that'll bother people. And then during COVID, I was like, All right, here's two. Are you bothered by two? And I would, and luckily for me. I had the Facebook group, I can actually go in there and say, Listen, I just put out two episodes this week. Is that, are you annoyed by that? And people would be like, No, put out more. And I was like, well, here's 30. And they were like, more, and I'm like four, and they're like, five. I'm like, Well, there's only five days, but here take five. And then I started doing these, like, little like, there's some episodes that are, I think of as more, like, not fill in, but they're shorter, you know, or they're more, like, focused on, like, my weight loss story or something like that. I was like, Well, I'm putting that on Wednesday, and I'm taking a episode away for people who don't care about my weight loss thing. Oh, hell, I'll put that out on Saturday. Yeah, people have been really, really lovely about it, and they download and they listen as much as they can. But it just occurred to me at some point. I don't know how crazy this sounds to you, Angel, but when you first start doing this, you feel like everything you record is gold, and you put it out, and you're like, Here everyone will listen to this all the P and I'm finally one day, I was like, everyone's not gonna listen to every episode. So here's five of them. Pick the ones you want, you know. And maybe you won't want, you know, feet on the floor, defining diabetes, but maybe one day, you'll think, God, what is that that people talked about? And you'll go back and find it, and it'll be there for you, you know. So I think of it as a
Speaker 1 1:11:13
lot. That's where I've gotten to too, because I had that guilt feeling like, oh my gosh, I haven't listened to all 1200 of the podcasts. But, you know, I don't know that some of the after dark series pertains to me, you know, or I'm not the type one that's living with it, you know, that it's to them. But I just think it's a very vast resource for everybody to go back to it and find the things you know, or go back to it again. And then the other thing that I really like is, I like the transcript underneath. After I've listened to it. You can do a search and look for keywords that maybe you are, you know, looking for, you can copy and paste and send them to your friends, and, you know, forward to friends and you know. So I do a bit of promotional and advocacy work with your podcast, just by sharing, you know, and that's part of it too, is just getting people educated, helping people along with it. So I think your platform does that.
Scott Benner 1:12:03
I appreciate it. It's hard listen. It's you mean, there are people who help me on the Facebook side, and I don't want to say but they're not full time, like they're not employees or anything like that. But so generally speaking, this has just been me, like, raising a barn by myself, basically as, like, I was like, All right, you know, I put one thing down. I was like, Okay, what does it need? Now, I'll add this to it. You know, what would support?
Speaker 1 1:12:23
Wish we could do the juice box cruise, the juice cruise. But,
Scott Benner 1:12:26
oh, would you really go? That's lovely.
Speaker 1 1:12:28
Oh, yeah, yeah. But children's Congress, you know, I'm kind of weighing and right? What can we do? And, yeah, and without abandoning my husband on the farm completely, because I am in the tractor, I when we were doing some of our loop and learn videos. Or, yeah, Joanne Milo, I usually am, Hey, it's your tractor friend be unloading grain, and
Scott Benner 1:12:50
she really is, yeah, yeah, no, it's another person who's very dedicated to helping people with diabetes. Just there's, they're everywhere. Like, people are, like that are everywhere. They're it's absolutely fantastic. I think you did a good job of representing them today, like all the people out there who are helping. So I really do appreciate that. Well, that's kind of you to say, thank you. No, no, it's i Listen again. You're either lying about this or you're you're literally doing the work of 93 people. So thank you. It's fantastic. You're a force of nature. To be honest,
Speaker 1 1:13:19
I don't feel that way. No. Why? Why would I have a friend that texted me, you know, and I told like, I'm not sure I'm doing the podcast. Maybe I should just give it up to somebody else that go. Maybe they have something you know better than myself to say, and you know, my friend had said, I'll read your book someday. I'm like, I know. Maybe it just takes one person, you know. Maybe you can just inspire one person. I
Scott Benner 1:13:41
need you to be more introspective. Why do you not feel like a force? I mean, you've just described the efforts of you know, a dozen people. Seriously. Are you not able to take that as a compliment? Or do you genuinely not think you're doing enough? I think
Speaker 1 1:13:55
I'm horrible at accepting compliments. Okay? Generally speaking, that's just my personality. You know, you look good today. Oh, thanks. I bought this at, you know, thrift store,
Scott Benner 1:14:08
probably the light, I don't know. Well, listen, this job beat me into taking people's compliments. And I know probably people laugh about that, but you can hear me over the years, just like joking my way through it, because I felt so uncomfortable, you know, like even you talking still about, like, oh, the platform does a good job of making data this available. Like, all I thought about was, I hate making those goddamn transcripts, like, it's such a pain in the ass for me, but like, at the same and I wouldn't read them, because it's not how I would access it. But when people told me it was important, I was like, Okay, it's important. If it's important to them, then it's now it's important to me, and I make it happen. But instead of feeling that when you say it, I just think I hate making the transcripts. Instead of just going, Oh, thank you. I'm glad that works.
Speaker 1 1:14:56
I'll give you one more plug too, that I would. Say that with the advocacy work, one thing that is also very helpful, you know, there's many different resources that you can find. I mean, I do try to do research. I watch, I love to watch Katie Porter, you know, try to take down the PBMs or something like that on Facebook or on YouTube. Excuse me, but you have had some interviews. You know, the orange book I read, listen to that when I had three hours on the way home from a camp with Nina and I had my air pods in, she had it. It was just so fascinating. It's really beneficial for somebody like myself that's doing advocacy work to have these resources outside of it and get kind of that personal, yeah, but in factual too, because you do have to have good resources when you're doing advocacy work. I mean, you can tell your story, but if you're actually trying to make effective change, you do need to have information. And so there's just so much to learn, and I'll never know enough. Yeah, oh, that people. And I'm 52 and it just rolls off of me. Sometimes I
Scott Benner 1:15:56
genuinely think that I'm never gonna understand the PPM thing. I really I feel like I'm there. I just
Speaker 1 1:16:01
say, it's a coconut in a shell game. That's it just feels like that. And I just, I don't know who's gonna crack that nut, but,
Scott Benner 1:16:07
and Scott did a great job of explaining, he's really, but really knowledgeable about it too. And, yeah, and that's the other thing, like, I can't, like, I can't, those
Speaker 1 1:16:16
tabs are still open. I'm still reading through his thing, and I'm really be listening to it, to understand it and let it sink in. Isn't
Scott Benner 1:16:23
it funny too? Because I when I said to him, I'm like, there's more stuff you could come on and talk about. He's like, I don't know, like, what people would be interested in. No, trust me, I'm like, come on and talk about now you can tell him, yeah, nobody believes you. Like, listen. You had the same thing. You're like, oh, I shouldn't go on the podcast. I'll be wasting the space. I tell people all the time, you listen to the show, right? And they're like, yes, and I'm like, did stuff help you? And I'm like, yeah. I'm like, well, your thing will help somebody else. And they're like, Oh, not me. I'm like, everyone thinks, not me, but everyone is the people who helps everyone
Speaker 1 1:16:50
else, if not you, then who exactly. I also
Scott Benner 1:16:54
want to thank you very directly for saying rut about 20 minutes into this was my favorite. It's my favorite part of the right, yeah, you said you wanted to say root. You don't understand that. You said root because you're, like, because you're from the Midwest, but Right?
Speaker 1 1:17:09
Well, and I went to international music camp, which is the border in Canada and North Dakota. And so we, you know, we had the Canadians, the roof. Is it roof?
Scott Benner 1:17:17
Oh, the roof, roof, roof. Thing is fantastic. But No, you said rut. And I was like, Oh, that's fantastic. I didn't stop you because, yes, oh, please don't. Thank
Speaker 1 1:17:26
you. I told you my accent might be out there, but I I've gotten used to yours after listening for quite a long time. Thank you. The Jersey accent.
Scott Benner 1:17:33
Is it jersey? I don't know. I grew up in Northeast Philadelphia. I don't know what it is. It's something, but no, it's definitely something that's we're all something. It's easy to point out, because I can't say water or water, or I don't know exactly how to say it. Obviously, my
Speaker 1 1:17:46
mom grew up saying hearing your mom say Warsh, and instead of wash, and so she gets very upset when I say that. But I think it's kind of cool. It's that German whorsch,
Scott Benner 1:17:55
the Warsh, yeah, well, so then you might hear a little bit of that with me, because my grandmother was Pennsylvania Dutch. So, like, I've said that before on here. I said, like, I knew what that meant. Oh, she's German. It's people in Pennsylvania who are sort of like Mennonites. They're German descent. Yes, we have Germans from Russia and North Dakota. Of course, you do. People are everywhere, yeah. But my grandmother, like, she spoke backwards, and I think that's in me a little bit. And what I mean by that, and I always use the same example, because it's the example she taught me when I was little, is she said, you know, if there was a cow on the other side of this fence, and we were supposed to throw it, hey, she would say, throw the cow on the other side of the fence some hay. Like, if it's all just like, backwards, you know? And so I think I have some of that, but I really see it when I'm writing. So when I when I sit to write, writing a book was horrible, because when I sit to write, I write out my thought, and then I always realize that the first thing I wrote is the second part of the thought, and then I have to swap it and put it back together
Speaker 1 1:18:56
again. That happens. I have to cut out about 80% because I wrote a letter to the editor in our local newspaper when I was advocating. And it was just so interesting to me, because I found out in 1922 a congressman actually went to Canada to get insulin when it was discovered for his child. I can't remember the name of him right now, but so I wanted to make this really effective letter to the editor in the paper. And, I, you know, I get flowery and wordy, and it's like, nope, I've got to cut it to, like, 100 words or less. And I was really proud of it when I was done, and it was what it needed to be. But well, and here we are, what an hour and a half in the podcast. So,
Scott Benner 1:19:34
hey, tell me that again. Though, the congressman did what and what was the year? So he, he went to Canada to get insulin for his kid
Speaker 1 1:19:43
from what state, if you learned that life saving medicine was readily available in a neighboring country to save your dying child's life, would you go to any length to find it? One father did in 1922 the son of a wealthy American Congressman smuggled the newly discovered experimental drug we now know as insulin from. Canada so that his son would have a chance at life, and I would have to look, but you can Google it. I didn't reference who the person was. It wasn't Leonard Thompson, because that was the first child that got it, but it wasn't Leonard Thompson. But I just found that so interesting, because I was trying to write an effective letter to the editor, and I'm like, Huh? This is interesting, because now the year 2023, many Americans without wealth, political connections or access to insulin are facing that same reality today. You know, one in four people with diabetes have reported rationing or skipping doses. In North Dakota, we have over 50 South 57,000 people living with diabetes. Wow. So it was just really interesting, and like I said, I tried hard to pare it down, but I just thought, Well, I think that touches a little bit on the reality of what the landscape of our politics are right now. Google that find it out, but you know, it's still happening. Give some
Scott Benner 1:20:52
that'll give people something to do. All right. Angela, thank you for doing this with me. I really appreciate it. Could you hold on for one
Unknown Speaker 1:20:57
second? Yes. Thank you. You.
Scott Benner (1:21:07):A huge thanks to the Contour Next Gen Blood Glucose Meter for sponsoring this episode of The Juicebox Podcast. Learn more and get started today at ContourNext.com/Juicebox.
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#1415 Blinded by the Light
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
After decades of uncontrolled diabetes and multiple eye surgeries due to diabetic retinopathy, Ryan discovered the Juicebox Podcast, completely changed his management, and dropped his A1C from 10.7% to 5.5% in just a few months.
Medical Missteps – One bad piece of advice led to years of mismanagement and diabetic retinopathy, with doctors failing to step in.
Right Info, Right Time – A pump trainer introduced Ryan to the podcast, transforming his approach and blood sugar control.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
We're all together again, friends for another episode of The Juicebox Podcast.
Ryan has had type one diabetes since he was very young prior to finding the podcast, his management was not terrific, and it led to retinopathy in both eyes. Today, we're going to talk about that and much more. 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. I know this is going to sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama or Missouri, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle health.org, you know why they had to buy an ad. No one believes it's free. This episode of The Juicebox Podcast is sponsored by the Dexcom g7 the same CGM that my daughter wears. Check it out now at dexcom.com/juice, box. The episode you're about to listen to was sponsored today by ag one you can drink. Ag one, just like I do by going to drink. Ag one.com/juicebox, check it out. Hi. My
Ryan 1:54
name is Ryan. I am type one diabetic. I live in Gilbert, Arizona, and I have been diabetic my entire life, pretty much. What does that mean? How old? So I was diagnosed at 16 months old. It was April 3, 1988 it was Easter morning. Oh, Happy Easter. Yeah. My mom came into the bedroom to pick me up to get ready for the day, and lifted me out of my crib, and my body was completely limp. She rushed me to the car, got my dad got to the car, rushed me to the hospital, ran through the front doors and just screamed, there's something wrong with my baby. They took me back immediately, and I don't know the timeline that it took, but shortly later, I was diagnosed with type one diabetes with a blood sugar of like 1000
Scott Benner 2:44
Oh my gosh. And
Speaker 1 2:45
I think we spent like a week in the hospital between getting me kind of regulated, and then all the training and stuff that my mom had to go through, and my dad was my parents owned a pizza restaurant at the time, so my dad was busy with the pizza restaurant. My mom went through all the training, and how much could you have weighed at that point? Right? Oh, man, I don't know. I was a decent sized kid.
Scott Benner 3:09
You guys ever talk about that like as adults? I
Speaker 1 3:12
mean, it's, it's funny, like I had never, I didn't talk a lot about it. I've heard stories throughout my whole life, but only up until, like last year, when I started listening to the podcast and actually, like taking care of myself, is when I started asking her and talking more questions. But, I mean, it was such a long time ago, I don't think my mom remembers quite everything like she doesn't. I asked her the other day if she knew my a 1c when I was, you know, when I was diagnosed, and she didn't remember, but she thought it came on so fast that it probably wasn't that high. Were you in your late 30s now, I'll be 38 next week, next Friday. Oh,
Scott Benner 3:45
happy birthday. Okay, so about 40 years with diabetes, give or take a couple there. I guess I want to understand your mom is the one that did the training, so she did most of the care, and that care. Do you even know what it was like when, I guess, my question is, is, when do you start recall being involved? I was probably
Speaker 1 4:06
five ish, six ish, when I started being involved in doing, like, really doing my own shots and doing my own blood test. I for sure I was, like, six or seven the first time I went to diabetes camp and I and I know I was doing all my own shots and stuff there. I mean, back then it was, you know, I was on regular and mph. And, I mean, even that's another story. The week I got diagnosed, my mom went to pick up, pick up the the insulin from the pharmacist and and she grabbed it and, like, for some reason, my mom just looked at it and was like, and so this is the diluted insulin. And the pharmacist grabbed it out of my mom's hands like it was death, because it was not diluted insulin, my first shot would have killed me. Somehow the script got written wrong, or something happened, and so they almost gave me, like, regular, like, adult insulin, full strength,
Scott Benner 4:48
and you were so small that the pharmacy was diluting the insulin for your mom. Yeah, yeah, wow, before
Speaker 1 4:54
I was able to do anything. I mean, I mean, you know, with art in but, like, obviously, you know, times are different. Every kid is different. My parents used to have to wrap me in a towel to do my blood test and my shots, just because they knew I needed it, and I and I didn't want to do it. And, I mean, it hurt, you know, some kids don't like it. Now it's, I go to get blood drawn and needles. Don't bother me. I'm good, you know,
Scott Benner 5:16
wait, they had to swaddle you, like, like, like they were trying to help a raccoon like that kind of a situation, pretty
Speaker 1 5:22
much, pretty much, at least, those are all the stories I hear. Is I used to be wrapped in towels just to be able to get, get to see what my blood sugar
Scott Benner 5:30
was, so you couldn't flail or defend yourself, that kind of thing, exactly.
Speaker 1 5:34
And I mean, you know, blood testers took a lot longer back then and required a lot more blood. So I'm sure it was even less fun.
Scott Benner 5:40
Okay, so how long? How long did the swaddling go on for? Do you think I'm
Speaker 1 5:45
trying to remember like, I have very I have very little memories of my like, early childhood, like some of my memories do include like, I vividly remember waking up from, like us from a diabetic seizure, like a low blood sugar seizure when I was probably, like, four or five. But other than that, I mean, I probably, probably around that time, four or five years old, I think I was, I don't think they probably swaddled me that long. But again, I don't remember, like, an exact time
Scott Benner 6:11
and so, but by five or six, you were giving yourself your own shots, but you're still doing regular and mph at that point too. What are you doing? Like, two
Speaker 1 6:18
a day? Yeah, I was doing one, one in the morning, one at night, you know, right before breakfast, and then eat, and then two hours later, snack, and then two hours later, lunch, two hours later, snack, two hours later, dinner. It was just very, very regimented. And I think that, like back then it, for me, it really kept, I mean, it kept things more regular, keeping that schedule and not not doing like MDI. What we know of MDI today and my blood sugars were actually pretty good back then. I know when, when, like, for the first couple years of my diagnosis, the the doctor who was the endocrinologist wanted me to be within, like, 100 and 125 and my mom said that she was able to keep me there pretty well. But for the first two years, she was on the phone with that doctor twice a day to get to get my doses, like that doctor alone, I think, say, you know, probably saved my life, just because of, just because of the time he was willing to put in there and never charged my parents a dime. I didn't have insurance my entire life, until I was probably in my mid 20s, and I got a job that that offered insurance, because when I was diagnosed, my parents were in the middle of switching insurance companies, the insurance company they were leaving took on the hospital bill for my hospital stay, and then the new one wouldn't take me on for a pre existing disease. So like throughout my whole life, it was I know for my parents, it was a struggle to be able to pay for things, for my for my care, and then I've had some really great doctors that have really helped out along the way, but a lot of those
Scott Benner 7:46
doctors sadly died from poor nutrition, from eating so much free pizza, though. Is that true? Probably, yeah. Okay, so when you say I started taking care of myself, like, went, like, last year. Is that what you're saying?
Speaker 1 7:59
Yeah. So like, when I said that earlier, I got on a pump in, like 1999 I was, I don't know I was like eighth grade, and I had went to diabetes camp again. It was, like my third time going to diabetes camp, somebody had a pump, and I started asking questions, and I went back, and at that point, like we were finding a new endocrinologist, talked to this doctor about a pump and was able to get on a pump, the pump, I think, really, like, made me feel like I had more freedoms, and I and I took those and then as I got older and I moved out of the house, and between drinking and partying and all the things, I let, I really let my blood sugars get out of control. I let, I let my diabetes, like, go to the wayside. I never didn't do insulin like I was always doing my insulin, but I definitely wasn't doing the right amounts. I wasn't adjusting basal or anything. At a doctor's appointment at the end of 2023 My doctor was like, I really think that you need to get on a on a better pump and and maybe go with like the Dexcom and the tandem, the T slim x2 and because before that, I mean, I've been on so many different mini med pumps, Medtronic pumps and things like that. And I did, I did do the Medtronic pump with with their CGM, and I hated it. I absolutely hated it just because of waking me up in the middle of the night to ask for a blood sugar to stay in auto mode and things like that. And so I basically, I just took it off and I ran it just in manual with me doing my blood sugar maybe once a day, sometimes twice a day.
Scott Benner 9:26
Ryan, go back for a second, though, before you tell me you were asked to go back to where you said, like, the first pump gave you freedom. So am I understanding correctly that you were so regimented on the regular and mph that you were following the regimen? But then when you went to a pump and you're like, oh, I can just like, eat when I want, and push the buttons, but then instead of doing that, you sort of just were like, Ah, I guess now I don't have to be regimented anymore. Like, did you you know what I mean? Like, did it free you, but in the wrong direction. I hope your New Year's resolutions are holding tight. Mine from a few. Years ago, at least one of them is still going very strong. That resolution was to take better care of myself, and I've been drinking ag one every morning since then, it's actually been easy to stay consistent, because ag one mixes easily, tastes great and goes down smooth. I count on ag one every day to support my immune health, it provides me a nutritional supplement that is the foundation of my everyday AG, one is sponsoring this episode. And ag one is offering new subscribers a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure to check out drink. Ag one.com/juicebox to get this offer that's drink 81 com slash juice box to start your new year on a healthier note. I
Speaker 1 10:47
think 100% I think that. I think it was just like I didn't I didn't have to eat a snack every two hours if I didn't want to. I didn't have to eat lunch at the exact same time or breakfast at the same time. And so it kind of stopped me from having to follow some sort of, like script for the day, and I just would do what I wanted when I wanted. And then, like, I mean, through my life, it, like it took all different kinds of turns. And there, I mean, my very first pump training, the CDE that did the pump training with me, you had to go in for a meeting. And there was, it was like a big group of people all doing the pump trainings at the same time. Fill up your pump with saline for the first three days, and then you come back, and then you do with real insulin. And they wanted you to come at lunchtime and bring your lunch so that we can all do insulin for the first time together. And so we went to Taco Bell. My dad and I went to Taco Bell on the way, picked up Taco Bell, got there, and I did my insulin like I Pre Bolus before I knew what that was. And I got yelled at by the CDE for doing insulin before I ate, because, well, how do you know you're gonna finish it all? My dad looked at him like he's not gonna not finish his food, like I never had a problem not finishing my food. But, I mean, it was like 17 units of insulin, so maybe she was afraid of that. But I think that also set, it set different price, like, a standard in my head of like, okay, do your insulin after your food? And so I got stuck on that for such a long time, going through, like, different endocrinologists. When I got to the endocrinologist, which the is the same office I'm in now, I think at that point, they probably thought like, Oh, he's been diabetic for such a long time he knows what he's doing, and so they just let it go for a while. I I've been at that office since probably 2013 2012 ish, my a one CS have not been below a 10% more than three times in that in those 10 or 12 years. Oh,
Scott Benner 12:37
geez, you figured it out. And then we're told by a CDE, don't do that. You went back in the other direction, and not under a 10,
Speaker 1 12:52
yeah? I mean, I like, I once I started listening to the podcast, I like, well, I'll get to that in a
Scott Benner 12:58
minute, yeah. But there's, like, a couple of
Speaker 1 12:59
decades in there first. So I had them print me out all my ANCs from when I was at the office, from when I was at their, you know, at their practice. And there's twelves, there's elevens, there's, you know, like so many 10s, and then, like, randomly, there's one, like, 9.8 and then there's, like, one 8.8 and that was when I was, I was at the gym, six, seven days a week, eating nothing but chicken, brown rice and broccoli for every meal of the day. I guess I just figured that, you know, the carbs out for it, and was able to do it, but it got my a 1c down to an eight. And I was like, Oh, this is awesome. And then I'm like, and now, like, flash forward, I was like, Okay, that wasn't so awesome, but at least I was able to get it somewhere. But I never had this intervention of the doctor telling me, like, you need to do better, you need to do this. Like they would just say, Okay, well, let's try to do something, and we'll see in three months. And it was just, it wasn't ever a here's why, here's what you need to do, here's how you need to do it. Kind of conversation. They
Scott Benner 13:53
just say random things that don't really do any that don't have value.
Speaker 1 13:57
Yeah. And then so in 2014 is when I first felt the the repercussions of this. In 2014 November, 2014 my best friend was getting married in Mexico, and we were getting ready to go down to to Rocky Point for the wedding. And I woke up one morning and in my left eye, it was like somebody poured oil in my eye and I was and I couldn't see. I could barely see through it. Didn't know what's going on. Went to the eye doctor. He was like, Yeah, you got diabetic retinopathy, and you need to go see a specialist. So he sent me to go see the specialist. I think that was like a Thursday, like the next day we were leaving. So he was like, yeah, go to Mexico. Have fun. We got you, you know, scheduled for surgery for when you get back, don't change anything. Go down there, enjoy yourself and come on back. And so a week in Mexico, half blind and came back. Had had my first, my first eye surgery in my left eye. Like six months later it happened in my right eye, and then about six months later it happened in my left eye again. And so I've had so 2000 14,016, I had two. Two eye surgeries in my left eye, one of my right eye, yeah, and then my left eye. From that point forward, the vision has gone in and out periodically throughout the next, like, eight years. But
Scott Benner 15:10
no one ever said to you, hey, maybe if your a 1c wasn't 11 or 12 or 10 or nine or whatever, like, this wouldn't be happening.
Speaker 1 15:19
It's really funny, because even every time I've gone to the eye doctor like, oh, it's not your fault. It's not your fault. Well, I mean, it is like I didn't, I wasn't taking care of myself. I let, I let my blood sugars get out of control to the point that this is what happened. But no, nobody, you know, I mean, nobody directly said that.
Scott Benner 15:35
It seems ridiculous to me that you'd have those problems and someone wouldn't stop and go, Okay, look, obviously, this isn't going well. Let's examine everything. We'll start over. Break it down to the to the ground, build it back up again. Get you going in the right direction. Like no one, like an endocrinologist doesn't say that. An eye doctor doesn't suggest it. Definitely
Speaker 1 15:58
not an eye doctor. I do think the endocrinologist has tried it. So, I mean, like, Yes, I don't think the endocrinologist have done their job in my life to better educate me on things. And I know for a fact that I also wasn't as honest with endocrinologist growing up as I should be. Yes. I mean, like, back before CGM like, you had the log book, and I filled out that log book in the parking lot of the of the endocrinologist office with just, I think I wanted my blood sugar to be this day, so I def I wasn't doing my part. And I own that 100% okay, but at the same token, you can't look at a log book and see, man, your blood sugars are really good, but you're a one season 11. Well, it just doesn't
Scott Benner 16:33
why your eyes are popping out like the wolf in the old cartoon was that Bugs Bunny cartoon, and, yeah, but, oh, wow. Look at this here. If I look at your logs, you're a one CS, 5.9 You're doing awesome. I mean, you're obviously, you're lying about your about your blood sugars, as you're doing that, Ryan, like, put me in your mindset, like I'm my eyes are popping, like I'm half blind. Sometimes it's not like they fixed it and it went it came back again. What are you telling yourself to be able to lie in that book, and what are you telling yourself about what your future is? At
Speaker 1 17:05
the time that the eye problem started, I wasn't even doing a log book anymore, because I was, I just, I just wasn't. And it was like, bring your bring your meter in. Well, download your meter. Oh, I forgot it today. So, like, I was just, I was trying to get away from, like, bad numbers and whatever they whatever I thought they were going to say. And every time I was, like, I'm healthy, like I feel good, I didn't feel bad, you know. And so I wasn't thinking anything was wrong. I just, I just really wasn't. If you've ever looked, I'm sure you have, but if you've ever looked at the bottom of the paper, PDF, or whatever, for the for the A, 1c, and it says the levels, and it says, like, at this level, you need, like, some sort of intervention. Like, I was never given that, and I and I know that I needed it. I've always, and I've always been the kind of person that, like, once I get this information, like, I'll run with it, I'll do really well with it. I've always been the kind of person that will once I'm in a new a new situation, whether it's a job or, like, when I was going to the gym all the time, like I I would do the research to figure out how to be the best in that, that I could, I mean, it's, it's helped me my whole life, except for in diabetes, until, until last year, when I found the podcast. But up until that, I just, I was just living my life and just enjoying everything I was doing and thinking, You know what? Like, you know, at least I have my toes. Because growing up like I was always told that, oh yeah, you just got to be careful your feet. Like, your feet are going to be the first things that have problems with them. So, like, every time I'd get a cut on my foot or something, like, I'd be like, Oh, I just got to wash that. Really good. I didn't think of anything else, you know. Yeah.
Scott Benner 18:30
So they set the bar pretty low for you, holding onto your feet. Anything better than that to win, right? Because I didn't have the worst thing happen to me that somebody told me was going to happen. Yeah, and when things go wrong, you're aware that they're wrong, but at the same time, this is the path you were put on, and you're doing the thing that the path said, but you're not though, like you were put on a bad path, meaning you didn't have a ton of information right, a lot of actionable tools, things like that. But still, when you saw the numbers, I'm trying to get to that point. So when you see the number, like you said, it's a bad number, it's not what you're looking for. But you don't know how to get to a good number, so you just ignore the whole thing. Is that right? Pretty much,
Speaker 1 19:13
like, I mean, obviously, like, I knew, like, okay, insulin, insulin brings your blood sugar down and and I knew that, but I was, I was in such a bad spot of of not knowing how to make the insulin work for my body right. Like, and, and especially like, without not checking my blood sugar time. Like, I've always had jobs where I was active and I definitely wasn't checking my blood sugar. Like at lunchtime at work, like I would go to work, I would wake up and maybe check my blood sugar in the morning and then go to work and just work, and lunchtime comes, great. I'm eating Chinese food today, and I just ate it. Just wouldn't do my blood sugar. And then, oh, crap, I forgot to do my insulin. So I did my insulin. Just kind of lived that path. And, like, there were so many times that I can remember, like, like, an hour later I'd be like, Oh, I still never did my insulin. Maybe I should check my blood. Sugar, and, okay, I'm just going to do 12 units of insulin. And I would just do insulin because I thought that's what I needed, and I thought that was the right amount. Or I know that this is what I would have done. My blood sugar is probably really high right now, so I just, and I would just give myself insulin. And I never had, like, at like, doing that. I never really had any, like, like, really low blood sugars. But, I mean, even, like, since I've been on the pump, I think I've, I've still had, I think, three or four, maybe five, like, diabetic seizures,
Scott Benner 20:28
because you're just, like, randomly picking numbers and putting in insulin, yeah, I mean,
Speaker 1 20:32
the very, the very first one I had on the pump was just because I was learning and I was new. I mean, it was, like, it was maybe the first couple months after the pump, my blood sugar was low, and I grabbed a peach, and I ate the peach, but I did insulin for the peach, because, hey, do insulin for your food. And I just wasn't thinking straight. And then I woke up, and my dad was like, I don't know, I don't know how my dad it must have been right around the time he was coming home from work anyways, but I was in the on the living room floor, and he I'm waking up to my dad making sure I'm okay
Scott Benner 20:57
during this entire, like, stretch of your life. And to me, the eyes are just very like, I don't know how you ignore like it looking like you're looking through oil, right? Like, do you ever, like, multiply that out and say, Okay, well, right now it's my eyes, but eventually it's going to be my life. Or do you never have that feeling of like, this is going to kill me when
Speaker 1 21:18
the first eye problem started in 2014 I was my now wife, and I were going down to Mexico, and so, like, and then now we and then we got married. We got married. Like, a year after that, she had a five year old little girl, and like, when we started dating her, her daughter was five. And so now I, now I'm like, I have this little family. And I was like, Okay, I gotta do better. And I and I really wanted to do better, and so I did. I started, like the doctors do your bait, your Bolus, you know, 15 minutes before you eat. And so I really actively started trying to do that more and and most of this, and this was after the eye problems, but so I started thinking, Okay, I got to do this. And then, just like, you're so used to these habits that you've fallen into that, it was really hard to just continue it, yeah, for a consistent amount of time to make a difference. And then 2019 I had my my baby was born, and, and at that point I was like, Okay, I like, I like, I really gotta do better. Like, now it's, now it's, I got more than one kid. I got my wife. Like, they need me, and my wife isn't working like she's we made the decision she was going to be stay at home mom, like my family needs me, and I so I really, I did. I like, I started wanting to try to do better. I do feel like I was doing better, but still not to the point where I should be like, I definitely was. I still wasn't checking my blood sugar all the time. My wife would always tell, hey, what you like, go check your blood sugar before dinner. The kids would have fun with it. Well, not my at the time, my baby wasn't old enough, but our older, our older daughter, well, what was your blood sugar? Dad and I, you know, 170 or whatever it was, and so it's still really high. But to me, 170 was always really good because it's a lot lower than it was in the past.
Scott Benner 22:59
Yeah, it's the three hundreds, probably before, yeah, and my family definitely,
Speaker 1 23:03
definitely started making me feel like I needed to do something different. So last year 2023 I don't remember the month of my appointment, but it's when we started talking about Dexcom again, because I had a Dexcom back in like, 2014 or something like that, because the doctors were like, we just want to see what, what's going on. And I hated it, and so I never thought I'd go back. And then she said, Hey, things have come a lot better. Let's try the Dexcom. So I figured it out, and I like, I have terrible insurance, so it's still, like, the pump and the Dexcom and everything started out cost me, like, five grand out of pocket. And I was like, Okay, let's, let's just see what happens. And it all, it all gets mailed to me. Then it's, let's set up your pump training. So I, I I call and I and I start getting the pump training set up. And this lady I'm speaking to, she's like, No days are working for her that our schedules would line up. And so she said, Okay, I'll have a member of my team call you. And so I get a I get a call from from a different CDE, let's meet up. Let's do this, like, anytime that you're available. So it was a Tuesday after work, and we met at the coffee shop down the street from my house. And his in laws used to own that coffee shop before it was, like it was when it was a previous owner. So he's, like, knows the area well. And I went into this pump training thinking, Okay, this is like, my sixth or seventh pump, and I'm going to go in there, I'm going to learn how to put the insulin in and and then that's going to be it. And I'll tell you that I'm so happy that that was not what happened. Because I sat down and he introduced himself, and I know that he won't care. His name is Jordan, and he is a group member in the in the Facebook group. I mean, within the first probably 10 minutes, he was like, Hey, have you ever heard of the Juicebox Podcast? And I was like, I go, No. And like, all of a sudden, just something about that meeting with Jordan, like it opened my eyes and, like, there was just something that clicked. And I was just like, hey, like, I need to do better. He was a diabetic, so that that was a plus for me, like he knew what he was talking about. It wasn't just like somebody that knew how the technology worked. We had a really good meeting. We learned, I think you learned how to use the pump, and before. Before I even left the table, I was searching the Juicebox Podcast. I was got signed up for the Facebook group and and then the next day, I think, I listened to probably my first, like, five episodes of the podcast. That was December 27 that I met with him. And then my next endo appointment was in the like, the second week of January. And I was like, okay, like, I know my, I know my ANC is not going to be good. And at this point now, I know what, like, what to look for on the Dexcom app, or, like, on the clarity app, of like the GMI to see about what it's at. And it looked really great because, like, within the first day of listening to the podcast and and just starting to do what it says to do, and then the Dexcom, and the way the Dexcom works with the tandem, my average blood sugar was like 111 for the two weeks that I had been on the pump when I went to the next endocrinology appointment. That's awesome. My ANC was still a 10.7 Yeah. But the doctor sits down and she goes, your blood sugar looks incredible. She goes, but let's work on these. Let's work on these low blood sugars. I think the lowest blood sugar I've had is like 64 and I'm okay with that. Like, I was so good with that. And I looked at her in the face and I said, I've lived for so long with high blood sugars. I said, I'm not going back to that, and I'm very comfortable with a 64 blood sugar. Like I had my pump set, like 65 as being low, and I've changed that since then. But like, I was just, it was a, it became a comfortable number. How does she respond when you push back? She was like, Well, okay, like, she didn't really say much. She just kind of let it go and right? I laugh.
Scott Benner 26:27
I just laugh all the time. When people are like, they make these pronouncements about anything. Forget what the number would it's like, this is very important. You can't do this. And then you go, I'm going to they go, all right, yeah, oh yeah. I mean, was it that way to stick to your guns anyway, 100%
Speaker 1 26:46
everything that I was hearing you say, I just took it, and I was like, okay, like, I have to do that. I have to do that. And I don't even remember, like, the context of the episode, but there was, like, one episode you said something, like, I was listening to the podcast while working. And so, like, I'm, like, I own a cabinet business. And so, like, as long as I'm not sitting in the front with with customers, I'm moving cabinets or I'm doing something so I can listen on my headphones, I can I can work. I can do things. And you said something about, like, doing extended Bolus with 30% up front, 70% over a half an hour. And I just, and I just started doing it. And like, I was like, Man, this is really working. I did it for every meal, and, like, it just seemed to be working really well. And then, like, I've tailored that plan now, and I do want to talk about that later, but, yeah, one of the episodes when you talked about, like, you said, like, well, ninja level stuff is one year when you do insulin, when, when your blood sugar is low, you correct with carbohydrates, and you do insulin at the same time. And I think that it might have been within the first, like, two or three weeks of the pump that I I put that to the test. I was delivering cabinets, my blood sugar started getting low. I didn't have anything with me, so I was, like, all right, like, before it gets really low, I'm gonna go to the gas station just up the street. So I went to the gas station and I got, just got an orange juice, and then across the street is a McDonald's. And I was hungry, so I went and I got a couple of I got a couple of McDonald's, and my blood sugar at this point was like, 55 diagonal down. I drank the whole thing of juice, and I ate two sausage muffins, and I was like, Oh, my blood sugar is going to go screaming high right now. Like it's, it's not going to take long. And I think at 55 diagonal down, I did like, eight units of insulin. My blood sugar leveled out at like 90. It was perfect. And I was like, All right, like, this guy knows what he's talking about. And I was like, This is awesome. It's all timing
Scott Benner 28:28
and amount, the whole Yeah, yeah, Brian, over and over again. I should just make a new episode every day that just goes you just need to put in the right amount of insulin at the right time, and then just figure out what that is. You can't get to it without the conversations and the weird explanations and, like, it's funny, like, you're talking about, like, putting in 30% now in the rest over a half an hour was how I got around. Pre Bolus thing for Arden's school meals, because she would go to the well, we would, we would Bolus from her classroom, like, remotely, like I she'd text and go, Hey, like, you know lunch is in 20 minutes. And then I'd look into your blood sugar, and it's like, 88 and then you're like, oh, okay, well, I want the insulin to get in because I don't want the lunch to make her high, but I can't put all of it in now, because by the time she gets down there, she starts eating, she's gonna get low. How do I manipulate the tools that the pump has for me to put that insulin, to layer that insulin in such a way that the action of the insulin is meeting the, you know, the the impact of the carbs. And I just bastardized the the extended Bolus feature on the Omnipod to do that. Oh, yeah. The reason, when you share it like, look what happens, like somebody like you, who, for 40 years has not been doing well. You know, give or take, who hears and goes, Oh, I wonder how I could tailor that for me. That idea, and it's, it's just awesome. And I make, you're making me feel like, really good. I appreciate knowing that this is helping you. Well, I'll
Speaker 1 29:54
tell you my next endocrinology appointment from that, from that day was, it was in May. It was like the second. Can't wink of May, my ANC was a 5.5 Wow. I just, like, I went in there, like, and I was like, I go, I know my, I know my a 1c is good. Like, I'm going in here, and I'm super excited. Average blood sugar of, like, 108 on the Dexcom. Like, clarity gap. And I'm, I've, like, I've got this. And I sit down, and she's the endocrinologist is, like, your a 1c is a 5.5 that's pretty good. Let's go ahead and let's, let's try to work on these lows. And I was like, really, like, that's what you're gonna say to me, like, you've seen me for such a long time, and you're just gonna say, oh, yeah, okay, you're doing pretty good with this. But let's, let's work on the lows. And I And again, I was like, listen. And I told her, I said, Listen. I said, You guys are comfortable with me being between 70 and 180 a 180 blood sugar is still not a good blood sugar. I said I am not going to do that. I'm not going to let that happen again, and I'm not going to continue to not have like, five A, one, CS and and I'm okay being low. And I need you to understand that. And I just really want to understand why you're telling me that this 4% below 70 is a bigger deal to you than the 25% that's okay to be above 180 when you're looking at the chart of what your blood sugar is supposed to be. Ryan,
Scott Benner 31:11
was this the same person told you not, the Pre Bolus, the Taco Bell? No, no, okay. Way, different people, okay, the same outcome, by the way, because, isn't it interesting? The reason I asked because that person was back when you were a kid who told you, I don't Pre Bolus that food. You just, you know, after you eat, you take it and then you live this way for as long as you live, and then you figure it out. And then another medical professional, I guess I'm making air quotes, comes in is like, Oh, I wonder. I could this guy back up again. Awesome. You're all doing a great job out there. Keep going. It's
Speaker 1 31:41
crazy. I mean, like, she now she just writes my scripts and, like, that's all she is. Like, like, once I started listening to the podcast. So like, I'm on the T slim, and then I start listening to the podcast, and I'm like, hold on a second. There's a tubeless insulin pump out there. So naturally, I got onto, you know, like, I clicked on the link on the webs, on the Juicebox podcast.com, or the Omnipod. I got information about it and so, and then I got a free trial ship to me. Obviously had to have the endocrinologist writing a script for it. And she's like, she called me. She was like, I just got a request for this. And I was like, I'd like you to just sign that and send it in. And she was like, Okay, I just wanted to learn about it like I and to be honest, I only wanted to get the Omnipod so that when we go swimming, or if we go to, like, the Great Wolf Lodge, like the kids love to go there, that I can wear this, I can wear the insulin pump just all the time, and feel good about it being safe. Like I went to the Great Wolf Lodge with my tea slim, and I wore it everywhere I went, like walking through the the lazy river with my daughter, or wherever I wore it because, like, it's not waterproof, but it's water resistant, and I was never underwater for more than 30 minutes, or definitely not three feet deep. So like, I was like, it's fine, but if I can have the omnipot on, then I can feel better about, like, going down the water slides and doing things like that, and just enjoying the time with my kids getting deeper into, like, the wave pool, like, just having fun. And so I wanted it for that, and I and I I'm glad I did. And then flash forward now and to September of this year, I go back for my endocrinology appointment. My a one sees a 5.6 so, like, I've kept it in the fives for, you know, the majority of this year up to this point. And then the next day, I went to bed, my CGM woke me up at like, 1030 at night, and I went to look at my phone to see what it was, and I couldn't see out of both of my eyes, my left eye, like I said before, my left eye has been the vision has been in and out periodically throughout the last eight years since my last surgery. Yeah, this was the first time that I hadn't been able to see out of both eyes. And the day before this, I put on the omnipot again so that I can refresh myself with how to make it work. But now I can't see. I woke my wife up and I said, Hey, I can't see out of both of my eyes. I think I know what it is. I said, I think that diabetic retinopathy is just coming back to bite me in the ass again, but I can't see. Like, what do we do? She like, she's like, dead asleep, and she's like, kind of waking up, and she's like, I don't know. Like, what do you want to do? And I was like, I think I need to go to the emergency room. In my mind, I didn't think it was going to do anything, but I was like, I think we need to do this, just to make sure it's not something else. I have to give her the PDM for the Omnipod, which I'm barely familiar with myself. So, like, how am I supposed to tell her what to do out even knowing it and not being able to see so she takes it. We get to the emergency room. My daughter's asleep, so my my mother in law, came and sat at the house with us, or sat at the house, just in case, and we go to the emergency room, and they're like, yeah, like, it looks like you got diabetic retinopathy again. Go see a doctor tomorrow. So by the by the time I woke up the next morning, my wife had already had a doctor's appointment made for me, and we were going into the retina. The retinal specialist, they couldn't see into my eyes with, like, the normal test that they do to, like, look and see what's going on in your eyes. So they had to do an out, an ultrasound in my eye. And the way my wife described what was on the screen was like the old TVs where you're trying to find the channel, and it's just static. It. Just looked like white and black, just fuzzes throughout the whole thing because of how much blood was in my eye and both eyes. And so then we started talking about a surgery plan and how to make this work. And the doctor was like, All right, like, I could do surgery tomorrow, but, like, we're only going to do one eye, and I really think you should wait, because I want to do it's an Avastin shot that you get in your eyes, and it's supposed to help with draining blood. It's supposed to help make supposed to help make the blood vessels stronger and all this stuff. And I was like, I just need to see man. Like, you know? I was like, I go, You don't understand. Like, I'm the only one in my family that works. Like I am what keeps my family alive, yeah, like, financially, like, my wife takes care of the kids. She, like, she she's got a harder job than me, but I gotta get back to work. He was like, I know you have to get back to work, but I want you to get back to work and and have it last for a longer time. So by the end of this, like, three hour meeting that we had there, I left with with a shot in both of my eyes and a plan for surgery for the following Monday while we're sitting in this doctor's office. So now, so this is Thursday, we're sending the doctor's office like my blood sugar's going up, and I look at my wife, I go, what's like, what's my blood sugar? And she was like, it's 130 I've already done two units of insulin. You're okay. Like, she's just, like, took control. It was, she's, she's incredible. But like, she, because she's watched me from, you know, at this point, she had watched me for the previous nine months. Like, just really take control of my diabetes and like, I come home and talk to her about what I hear on the podcast and what I'm doing and everything. And so she, like, while she doesn't have the hands on she, I think she knows enough. But so then the whole weekend, I can't see and by the like, when I would wake up in the morning, like, I have really bad foot on the floor, and so I wake up and she had already done, like, a unit of insulin. My blood sugar is, like, 104 and she's, like, I did a unit of insulin so you can have coffee soon, because I know your blood sugar is going to go up. So, like, she's controlling this. Like, I was like, Man, I'm glad that. Like, I knew enough about it, so at least tell her how to push the buttons. But now I don't got to
Scott Benner 36:53
do anything. Well, also you by coming home every day and sharing what you learned, whether she was learning too,
Speaker 1 36:58
oh, 100% you know, I mean, and like, there were, there were times where she was like, All right, I don't want to hear about the podcast. I want to hear what your blood sugar is doing. But I was like, but they're all the same. It like, I need to tell you one, to tell you the other. I can't just tell you part of it, because I need you. I need you to understand why I'm telling you this. Finally,
Scott Benner 37:15
some ladies complaining about hearing from me. Usually it's men who are like, I please stop telling me about this guy's podcast. I like the equal opportunity I have to tell you I'm I've never been proud of a person I've ever met in person before. Like, it's really, it's awesome to see how you just, just made the decision one day. And, I mean, how amazing is it that you, you know, just met a pump trainer who happened to, like, get through to you. You know what? I mean,
Speaker 1 37:40
oh yeah, I'm a Christian. I go to church every Sunday. Like, to me, like, this is a total God thing. Like, it was just, it was just incredible. No, yeah. I mean, Jordan is, he's amazing. I like, he's, he's such a good guy and and now Him and I are great friends. Like, it was, like, it turned out to be a really good friendship, more than just, like, somebody that taught me how to use the pump. Oh, that's awesome. But, yeah, like, so I had, I
Scott Benner 38:01
was gonna say, I've spoken to Jordan. He is a good guy. Yeah, yeah, he's great. So now here you are. You've got these two shots in your eyes. You're getting ready, prepping for the for the surgery. They start with one eye. How long? What's the procedure like? What's the recovery like? How long does it take?
Speaker 1 38:17
All right, so the procedure is, like, it's like a 3040, minute surgery. They put you under just so they can numb your eye. And then you're, you're more in like, of a, like a dazed state during the surgery, and there's a patch on your eye for the whole next day. You have the next day appointment. They take the patch off your eye, and you only need to wear it at night. You have, like, a regiment of drops you have to do for a month. From what I remember, like, again, like back in 2014 when I had these problems, I always had one. Always had one good eye. I had the surgery in my right eye first, and while it's healing, I feel like, okay, things are getting better, and I'm able to see and, like, within the first, like, couple days, I was like, Okay, I'm really starting to be able to see better. And then I was like, it's not getting better fast enough. And I and I was like, I know that my left eye still needs to be done. The doctors wanted to wait until at least, like the, I think, the two week appointment, a follow up appointment for my right eye surgery, to schedule the surgery for the left eye. I quickly learned that, like, my right eye wasn't actually getting better. My left eye was just like the shots were actually working in my left eye, and the blood had more had drained out of it pretty well, and I'm seeing better out of my left eye than my right eye. And it turns out it's because I had a cataract in my right eye that I'm that I have to get fixed and But first I gotta still get the surgery in my left eye so that it doesn't come
Scott Benner 39:32
back. I mean, that's a lot. Yeah.
Speaker 1 39:35
Okay, so we go back for the two week appointment schedule surgery for the following like we're sitting there ready for that two week appointment, like we had something planned for that weekend. That was like, All right, we have to do these things for this weekend. And the doc, the doctor, was like, I could do surgery this afternoon, if you can leave right now and go to the surgery center in Scottsdale. And I was like, two weeks ago, and said, Yeah, let's go and at this. Point. I was like, I want to wait until through the weekend like there was, and I can't even remember what it was now that we were doing. But I was like, whatever we're whatever we're about to do this weekend, is more important. I need to be able to see, make sure things are okay, and and then we'll just do it on Monday. And so the following Monday, going for my left eye surgery, for both of the surgery, so for the first surgery, I was on the Omnipod, and I made sure to talk to the doctors and then or talk to the nurses at the at the surgery center, about, like, I'm, I'm gonna keep the pump on. I'm gonna, like, I would like my wife to be as close to me as possible so she can help manage my blood sugars. And they were like, Okay, well, it's not a possibility, but what we'll do is, is we have a type one nurse that we'll we'll make sure she's with you. At that point I couldn't see anybody. So it could have any one of those nurses could have been the type one nurse. I didn't know who it was, but at least there was somebody there who I thought knew what was going on. I'm on the Omnipod. I went into surgery with my blood sugar at like 106 and I think, I think I maybe went to like 111 through the whole surgery get done. And then over the next couple weeks, like I said, my left eye was getting better, so I switched back to the tandem because I was almost out of pods. Anyways, just because I had just been working through my free, the free trial that they sent me, got got back on the tandem. Now I'm going in for my second surgery. It was the same, the same nurse that had type one, and now her and I are talking, because now I can see so I can, like, actually communicate with her, like I'm sitting here talking to her about the Juicebox Podcast. And she was like, Oh, you're, like, the third person that told me that. I said, well, then you better start listening and get on there. Like, and I was talking about her, talking to her, about her a 1c the anesthesiologist are giving her a hard time. Because, like, I was like, Yeah, I'm at a 5.6 and she was like, Oh, well, I'm at like, a 6.2 and like, they had this really cool relationship where, like, he was given a hard time at 100% joking with her, but it really was cool, because on the on the T slim, I had talked to people in the past about, like, they went, they went in for some surgery, and so they would set it on, like, exercise mode, so that it would target a slightly, like it would be not as aggressive, and when it's going to give you boluses and stuff, because it's thinking you're at your exercising Well, I was like, I'm not like, I don't want my blood sugar to be high like that. So I put it in sleep mode, let the algorithm really take control of itself. And like, up to this point, like, my I feel like my basal were pretty well dialed in. My blood sugar started dropping, and I'm watching the Dexcom, and I like, I hit like, 74 or something. And I like, I was like, I know this is going to drop. And I asked the lady, I said, I need something to bring my blood sugar up. And so, like, they were like, okay, and they got the dextrose. And I was like, and I looked at I was like, Is there any way to know how much is in that? Like, how much carbs are in that? Like, what am I gonna get right now? She was like, Well, the doctor wanted me to give you the whole tube of it. And I told him, maybe half. And he agreed with me, like he listens to me. I said, I don't even want half of it. I just need a little bump, like, I need a little bit just to just to level this out, like, I'm gonna be fine. And so she did it, and within like, the first, like two or, like, the next Dexcom reading was, like, it went from like a 74 to like 120 and I was like, I'm sitting here. Like, Oh, this sucks. So I was like, I'm not gonna let anybody know this. But like, I Bolus another unit while I'm sitting there, because I was like, I don't want my blood sugar to be high. And so I went through that whole surgery, and I think that, like that 124 dropped right back down, and 125 whatever it was, dropped back down. And I rode like 80 through the whole surgery. And I don't think I would have, I definitely would have done that if it wasn't for the podcast. And I mean, I would have been riding through that surgery at like 300 if this was
Scott Benner 43:21
better high than low. Like, you know, at least I'm not gonna, yeah, no, I understand.
Speaker 1 43:26
My last surgery was on on the 21st of October. My left eye is great. Like, I can see really great out of my left eye. I know I need a new prescription for glasses in that eye, but we're waiting for that because next Monday, the 25th I'll be having the cataract surgery to clear that up, and then I should be good.
Scott Benner 43:45
Wow, man, good for you, by the way. What do they think brought on this, like, kind of like, second round of all this? Is it, the fact that maybe you brought your a 1c down so fast,
Speaker 1 43:55
I probably think that's what it is. None of the doctors have said anything that they think that that's what it is. The only thing that the eye doctors have told me is your agencies are perfect, like they're really, really good. I don't think you're going to have problems if you keep this up, that you're not going to have recurring problems again, if you keep this up, that's awesome. A lot of it is just like the years of neglect are catching back up to me, and then probably just dropping my ANC so fast caused it to happen, and now I just got to live with it. But I've met my out of pocket deductible for the year. My out of pocket max. So like, I've got, like, I'm stocked up on OmniPods. I'm stocked up on all kinds of stuff now that, like, I wasn't going to be able to afford to keep doing the omnipot, like, to keep doing Omnipod in tandem. So now I'm happy, at least I got a three month supply where I can use the Omnipod when I want to, like, I'm going to keep rocking the tandem, because I love it. But,
Scott Benner 44:39
yeah, that's awesome. It really is amazing. Do you look back at all that time and have a feeling one way or the other? Are you angry sad when you can see what you know now, how it leads to your better health, and then you look back like, what's your feeling there? Like, who do you hold accountable and and how do you feel about it?
Speaker 1 44:59
I. Look back every now and then, and I'm like, man, like, if only I would have done better before. Maybe none of this would have happened. I only let myself have those thoughts for a very short time because I just I'm like, I can't do anything about it. I don't want to dwell in the past, and so I'd rather just sit and think, you know what? All right, what am I going to do from this point forward? And how am I going to keep the a one Cs that I've had, like, I had my a 1c drawn a week ago or two weeks ago so that I could have a fresh one, even though it was only in September, and my ANC is, it's still a 5.7 so like, I'm, I'm at a point where, like, I know how to do this, and I just got to keep moving forward with this. So I'm not, I'm, I just don't want to let myself, like, get into a a negative thought of, like, what happened in the past. Like, I definitely like listening to, listening to the first. I don't think it was his first episode, but Mike the first, the first episode that he talked about, like, his problems with his diabetes. When he said that the doctor told him they wouldn't see him anymore if he didn't get his blood sugars taking control. And he thought, okay, insulin life. No. Insulin death. Like, I needed that, and I I struggled for a long time. Am I going to continue to see the same endocrinologist office that I've been seeing didn't do anything for me when my agencies were out of control? Or should I start searching for another endocrinologist office? And I did. I looked around at a couple of them, and one office that I looked at actually had working in their office, that same diabetic educator that told me not to Pre Bolus for my meals. So I said, I'm not gonna go to that office. And then I and then I just kept thinking to myself, you know, like, I don't think that I'm gonna go to a different endocrinologist and have any kind of, like, grand, amazing, like, experience that's gonna change my life any more than the podcast is. So I just need somebody to write my prescriptions. And so I'm like, I'm just gonna stay where I'm at. They already have my information. It's less work that I have to do as far as, like, signing up with somebody new, finding out where to go. The last time I sat down in her office, she's like, Okay, well, there's any, is there anything else that I need to write you a prescription for? Like she's just ready to do what I asked her to, because she sees that I'm able to to keep this up and keep going, like I go into the office and, like, average time and range is like 94% and, like, the 94% sure, like, it's, I don't like to look at that one, because it's the 70 to 180 like, on my pump, I said I have it set from 70 to 130 and even that, like, I'm still at, like, most of the time, I'm like, 80% or more in range. But like, wow, I just don't think I can go somewhere else right now. And maybe this is just, like, a, I'm getting too big for my britches kind of talk. But,
Scott Benner 47:24
I mean, I don't even know where you headed from, from this, like, it's, it's awesome. You're doing great, you know? Like, there's, I mean, I guess you could go lower if you wanted to, but,
Speaker 1 47:33
and I and I want to, and so, like, actually, right now, like, I've been working, like, so, like, I said, like, being on the tan I'm like, I love the algorithm. I love how it works. I love how the algorithm works based on the the settings you set in the pump with, like your actual basal profile. So one of the things that I had been doing like to get to the 5.5 so I want to say this, I didn't change how I ate. I didn't change how I did anything in my life, except for how I was doing insulin. Like I eat pizza at least once a week. I mean, I eat Mexican food at least once a week. I eat Chinese food, like at lunch for work, like we're eating out all the time, and then at home, my wife cooks dinner and but I didn't. I didn't want to change anything. I wanted to learn how to continue my lifestyle and and just do better with the insulin. So I quickly learned that, like I didn't, it didn't matter what pump I was on, the algorithms not strong enough to fight a rise from from pizza by itself, right? I started taking the pump out of control IQ so that I could increase my basal over like a four hour period by like 250% I would, I would do insulin for pizza and have like four slices of pizza. Do insulin for pizza, my butcher would be 80. The highest I would get is like 115 and then I would and I would cruise, and I was able, like I can manage that. I don't know if I posted it in the Facebook group, but I had pan express one night, and I did a very similar way. I was really hungry. The meal that I ate was like 220 carbohydrates or something. It needed 28 units of insulin and the pump, like I in the settings, like I could have raised the settings, but the settings were only at, like, I could only do 20 units. So I Pre Bolus 20 units of insulin when I pulled into the parking lot to go order the food. By the time I got home, I was like, I don't know, 94 diagonal down. I started eating. And then I Bolus the other eight units over a period of time. And then I did the extended bait, like the increased basal, I think I touched like 124 something like 100 like, in 100 20s, and just cruised. So, like, I figured it out, like, I need to do this. I want to let control IQ do its job the way that it's supposed to. Because I think it's, I think it's amazing. So I started creating these new basal profiles. Like in the pump, you can create a, like, a personal profile, and you can name it whatever you want to name it. So, like, I have one in my pump now that is called pizza like lunch. When I eat lunch that's pizza or Mexican food or something that's like higher fat and higher protein, I will turn on this basal profile. And in the basal profile, from like lunchtime until dinner time, my basal rates are increased by 250% and then I titrate it down. To 225% and then 200% and so it kind of acted like an increased in basal. It acts also like an extended Bolus, because in the tandem pump, you can do an extended Bolus while you're in control IQ, but only up to two hours. So it's not long enough for to handle like pizza or handle Mexican food and things like that. So I'm doing it using control IQ, and I don't have to turn control IQ off. And not that it matters, because it's not like, it doesn't really learn anything. I'm wanting it to see, to see what, what I can do, and to not have to do it. So many people have, like, I've talked to a few people about this, and they're like, Yeah, but that takes so much time. I'm like, No, it took me like five seconds to change the setting in the in the pump. So, like, it's not like I'm taking like 30 minutes to do all this stuff. It's just, I want to figure out how to make control IQ work the best for me, because it's an amazing tool. I'm
Scott Benner 50:53
not trying to scare people, but I've seen your eye, you know what? I mean, that should be enough to get anybody to go, oh, it's worth, you know, pre volusing, or changing a setting once in a while, or something like that. Like, if this is the alternative, then I'm, I'm in, you know what I mean? Like, it's the photo is shocking. You know what I mean? Like, if you're not ready for it, you're like, Oh my God. If you told me, Hey, look what happened to me. I'm never gonna see again, I would have believed that. Two seconds. Really crazy, man, what you went through? I know sounds strange coming from me, but like, what did I say that got you? Was it just the idea of, like, I think I can manipulate the insulin and put it where I needed, or was it, I don't know, Ryan, how? Also, people should know like you're one of the people in the private Facebook group that helps with like you're a group expert, right? So you leave links to episodes and things like that to help people when they have questions which I can't, can never thank you enough for but obviously, like, the podcast had such an impact on you. They were like, Well, I would like to help because we saw you come into the group and you're, I know you were the kind of person that we wanted to offer the group expert to because of the way we saw you talking to people. What even brought you there? Like, do you have that feeling of like, Oh, I I struggled for so long, and I found this thing I want to show with other people. Or were you trying to pay me back? Or what starts you like, posting like
Speaker 1 52:11
that? No, I mean, 100% it is more more than wanting to help, to help pay you back. Because, like, I definitely owe a lot to you. But
Scott Benner 52:19
do you have that feeling? By the way, I don't want you to have that feeling. But do you have that feeling?
Speaker 1 52:24
I know you don't. And I and I'm like, I'm saying it genuinely, because I tell everybody whether they're diabetic or not, I tell people that, like this random guy in a podcast really helped change my life. And so, like, I do, like, more than that, like, the the bigger part of it is wanting to help other people, because, and up until, like, I was in the Facebook group I didn't like, I'm the oldest diabetic I know, or like the old the longest amount of time diabetes that I've ever met, right? Like, I don't know many people that have had diabetes as long as me, and now I'm in the Facebook group, and there's people in there that are diabetic for 30 years longer than me. And I'm like, this is incredible. You see these posts from New Parents of diabetes that their world just ended. And I'm like, I've went through a lot of that stuff already, but at a time where it took, like, a minute to get a blood sugar reading on your pump, but, I'm sorry, on your meter. And we're at a time now where, like, things are so much different and better that there's, there's just so much more opportunity. And I really just I, like, like, I said before, like, every time I do something, I go all in and so, like, I'm able to take the information that I hear on the podcast and then doing research on my own and figuring things out, and I'm able to just, it's just stored in my head. So when I see somebody talk about a problem they're having, I'm like, I already know where to, like, how to answer this question, yeah, I honestly, I have a harder time, like, remembering which podcast episode to link be like, go along with what I'm saying. But like, I'm able to figure it out.
Scott Benner 53:48
Like, it's very helpful, by the way. I can't keep up with it. I've actually toyed recently with, like, actually making office hours for myself that are just for the Facebook group where I like maybe I have to just sit down every day for an hour or so and just answer questions. You know, it's just the thing I can't keep up with. I could sit down for eight hours and answer questions, by the way, and I wouldn't get caught up. So you're counting on people's kindness, and you're hoping that they, you know, know the right what places to point but it's people like you who like you're motivated. You have that you have good energy about it, like, Hey, I know where the answer is. It's right here. Like, go look. And you can't, you know, you can't force people to listen, or anything like that, but at least you know, you put them on the right path, and if they can get to it, then that's great. If they can't, hopefully they'll come back and try again, but it's just tough, right? When, you know, I mean, when you've experienced the outcomes that you've experienced, to see somebody who's you but 25 years younger and hasn't had trouble yet, and you think if I could just put them on this right path, right like this will never happen to them, absolutely.
Speaker 1 54:57
And I mean, it's just like my daughter. Has a friend. My older daughter has a friend who she's type one diabetic. They were in the marching band together, and she's got gastroparesis now to her, my daughter had a birthday party, her birthday last February, and we had all these kids over, and she was one of them. And so I was talking to her a little bit, and I was trying to tell her, like, listen, like, you should listen to this podcast. And she was like, Yeah, but I'm different, like that. And I said, Hold on a second. I said, watch this. And I took out my phone, and I said, Hey. I said, my daughter's friend. She's diabetic, she's got gastroparesis. She thinks she's she thinks she's alone in this. I can't remember exactly what I how I worded it, but like, within, within like five minutes, there was like, two or three people that commented that they that they had the same thing going on. And I showed her, I said, Look, you're not alone. There's so many people in this Facebook group that it's not going to take long to get answers. I said, I think you should listen to the podcast and join this group. And I don't know that. I don't know if she did or not. Like, I'm not like, I'm not going to keep tabs on my daughter's friends, but I just, I wanted her to see she's not alone. And I and I tell people that all the time that come into the Facebook group, like, there's so many people in here that if you ask a question, you're going to get an answer within minutes, usually. And it's kind of it, it could be a life changing answer if you just implement what you see and what you hear and and I think that's the biggest part, is like, you can tell people all day long to do stuff like you said like, but you can't that person has to implement it into their lives to really make it work for them. I think that some people just, the more you, the more it happens that are, the more they hear it, it might make them do it. So like, I try to, I try to answer as many of them as I can, but like, it's, it's nice when I see other people in the like, other group experts. And I'm like, All right, like, that one's handled. I'm not gonna, like, I'm not gonna beat a dead horse with it. Yeah, I
Scott Benner 56:39
know I feel that way sometimes, like, Oh, good. Somebody got that one. You know, you can expose people to the light. They gotta let it in and, oh, yeah. I mean, that sounded so verbose, like the light, but I just mean, like, good information, you know what? I mean, like, there's, you know, you've detailed it. Plenty of people have been on here, have detailed it. You can live with diabetes for a week, a month or 10 years, and nobody will ever tell you something as simple as, you know, insulin doesn't work right away, so you have to put it in a little before you eat. Yeah, you know, and how life changing that one decision can be seriously, I look back on that moment for you and your story, and I think that person is maybe as culpable for what happened to you as anybody else, just telling you, like, don't put your insulin until after you eat. Like, just being that wrong about something so basic, and look where it led you, you know. Oh, yeah. And if you don't decide to get a pump and don't meet a pump trainer who goes, Hey, have you checked out this podcast? And if you don't, then go actually check it out and try it, or relate to it, or like, you know, you also Brian. You could have logged on and just not liked me. I mean, you might have been like, this guy's voice bothers me, or I don't like his ad, like, who knows? Like, you might not have intersected well with it, and then you're lost again, like, and then you're just blowing around until, hopefully you land on on a good answer that works for you. I just feel lucky that you found it. I feel lucky that everybody finds it, because, again, it's not, I don't know how many times I can say this. It's not like, I know a lot of like, super secret stuff that nobody else you don't even mean, like, it just, we just talk about it in a way that is accessible for people.
Speaker 1 58:13
Yeah, no, absolutely. It's just 100% like, just the way that you talk to people in general is just like you get, you get this information from people who don't even know that they have it, and then they're just telling you their story. And it turns into something that helps, like the management series in the in the podcast, like, definitely are, like, incredible, and everybody should listen to them. Like, I've listened to the pro tips like, three times through, but I learned so much from other like, just conversational episodes that, yeah, I agree that most people don't like if you're not listening to all of them like that, there's stuff that's there's stuff that's left on
Scott Benner 58:51
the table. Listen, I understand everybody's got a different life, you know, but I the people who say to me, like, because I get it all I get, I don't have time for this. And all I could think is like, Okay, I mean, it's just your health, but whatever, the one that recently, somebody will pop in and say, I don't learn that way, or I can't, like, I have ADHD, I can't listen. I'm like, you know, like, I don't know how you can come in here, tell me, Hey, my seven year old needs help. I'm afraid we're killing him. And they go listen to this thing. Oh, I can't listen to a podcast. Like, oh, I mean, what do you want me to do? You may come to your house and whisper it into your ear until, like, you understand. Like, I'm not sure what, like, at what point do you need to like, I have ADHD, well, then listen to it slower, in smaller chunks. I don't know. Like, I have no idea. Like, I'm sure it's not easy to have ADHD, but like, I don't understand, not going well. I have ADHD, but I'm gonna try this, because this sounds important, and Ryan and 9000 other people in here are telling me that I listen to this podcast, and I'm doing great now. And the secret is in there, what you said, By the way, Ryan, like, if you listen to the show every day I put it out, you'd spend about five hours a week. Listening to it. I guarantee you're all scrolling Tik Tok for twice as much time. Ryan's right, like 20 minutes into a conversation, a half an hour into a conversation, sometimes five minutes into it. Sometimes at the very end, a person will just say something almost off handedly, and it could very well and often, is the thing that's going to save you, because eventually you you will hear somebody mimic the problem you're having, and then they're saying it out loud, because they generally have an answer, or they know where to go to find out, or something like that. Like, that's the, that's the key. I mean, oh yeah, you got it right. As far as I'm concerned about the way the podcast works, you have it exactly right? Yeah.
Speaker 1 1:00:39
I mean, it's, it's incredible. Like, like I said, like being diabetic from before, I can remember, like, I listen to every episode, and I'm like, I can, I can almost relate with something that every single person is saying. I don't know, man, I just feel blessed that I was able to, like, find it, and it's just it. It's so awesome that like that. This is out there for people. It needs to be more. I know like, you say it all the time. Like it, I know that you hope it reaches so, like, millions and millions and millions of people. And I do too, and I and I just really think that, like, it could make a huge difference in the world for everybody to know it. So I do, I tell, I mean, I tell everybody about it. Like the babysitter I had when I was a baby, like she was my babysitter before I was diagnosed. And then she, like, learned so much about diabetes. She got diagnosed with diabetes when she was, like, I don't know, 11 or 12 or something. I can't remember how old she was or she had she's probably older than that, because my, she's my, maybe 16. She told me that just from, like, learning from me and like, taking care of me as a baby, it helped her with her diabetes. And like, I told her about it. Like, I still, I still talk to her every now and then and so, like, I'm telling everybody
Scott Benner 1:01:42
I do this thing. I have these charts that I use when I speak in person to try to make that point, which is, I'll say, like, Okay, so here are my friend and my daughter's graphs, and they're really, they're terrible, they're all over the place. And I said, and then, like, I spent some time privately speaking with her, so all I did was download the ideas that I implemented back then for my daughter to another person, and I said, Now look at their graphs. Look how oddly like similar they are to each other, right? These are two people who live in two different places. They eat two different ways. They wearing two different pumps. They have cycles that are on two different cycles. Like, all this stuff about them is different, but look how similar their outcomes are. What is the tie in here? Right? Like, why do these graphs and these graphs look the same in two completely different people? And the answer is, I'm the one who explained to both of them how to take care of their diabetes. When people say I'm different, or, you know, I'm brittle, or you don't hear people sad as much anymore where, like, you don't know my diabetes is different. You're all different. And there's a lot of tons of variables, but the one thing that never changes is that the insulin needs to be in the right places at the right time. And that really is as simple as that. It's not easy to accomplish, maybe, but it isn't more difficult than that. Truth, if the insulin was there in the right amounts at the right times, you wouldn't have excursions like that. You wouldn't get low later, and you can figure that out now, go listen to a free podcast until it makes sense, and then go live your life and don't have an eye surgery one day. You know what? I mean, like, 100%
Speaker 1 1:03:15
and, like, it's funny because, like, I, I was talking to my wife about it one day, and, I mean, this is probably months ago, and I was like, I go, it's crazy how like, easy this actually is. She's like, easy. She goes, You know, this isn't easy. And I said, but it's really not that hard. Like, once you just once you learn the information, like you said, timing an amount, once you and like, and everything's different, right? Like, one of my favorite things in the world is potatoes. And I think I've eaten potatoes like, four times in the last 11 months, because potatoes mess my blood sugar up. And so, like, I'm willing to cut that out. And then every now and then I'll like, Alright, I'm going to try to figure this out. And like, I'm just, but it's okay for me to, like, it's okay to, like, just remove something or to do something different, to be able to manipulate your blood sugars to work with, with what you want to eat. And so like, I can eat potato chips because the fat, or I can eat french fries because the fat helps. But like, if I just eat a potato, my blood sugar just shoots, just shoots straight up. And I know a lot of people are like that, and I know there's different ways to cook them and different things that like that work. But like, You got to spend the time to figure it out, and it really is just implementing what you learn and trial and error. I try to tell people like and without pushy and without being like, I know everybody's different, but don't wait those three months between end of appointments to make a change in your pump. You are allowed to get in the settings of your pump and increase your basal rate, you're allowed to change your sensitivity, factor, your carb ratio. Like, you can figure these things out on your own. And then if, if you really are the type of person that needs to go talk to your acknowledged about it great, make notes. Like, here's what I did, and here's the outcome, and here's this and and just go talk to them and just tell them, hey, look, here's what I tried. Is there anything different that you see? Like. Maybe it's somebody has a great endocrinologist that's like, oh no. Like, what you did really worked. But why don't we try this instead? And like, and really get it going, or you have the endocrinologist that are just like, oh yeah. Maybe you shouldn't have done that, because your drop, your blood sugar dropped down for one for one, CGM reading right? Like, one way or the other. It's your life. Yeah, it's your life. Get out there and just, like, really take control over it and don't turn out, like, my eyes, like it's
Scott Benner 1:05:26
No, I mean, listen, it's sad, right? Like, I mean, what happened to you is really tragic. It really is. I mean, you mentioned Mike earlier, from complications is complicated, and I think buying a condo, condo shopping, yeah, is maybe his other episode. You have no idea how many people, like, adults living with diabetes, have been helped by him sharing his story. And so where, in the past, I would have been afraid, like, oh, you know, you're gonna, Ryan's gonna come on, he's gonna talk about this eye surgery, trust me, if you guys could see it, you'd be fucking freaked out. And people are gonna see that as, like, you know, fear mongering and everything. But I don't know, like, I just, I'm not saying it's gonna happen to you, but I'm saying, you know, wouldn't you like to make as sure as possible that it's not going to happen? And you know, if the answer is just using your insulin better and taking a little control and not being so like, oh well, this is what they told me to do, and I did it. It didn't work out. It's not my fault. I followed instructions. Like, you know, that kind of stuff. It's not unknowable how to handle it, and it is not crazy to think that if you ignore it, you're going to have a significantly poor outcome that will impact your life and possibly in an irreversible way. That's just true. It sucks, but it's true. And if you're listening right now and your kids five, and you're like, upset by it, like, I mean, good news, right? Like diabetes, pro tips, you know, the bowl beginning series, you should be able to absorb everything that Ryan heard that helped him. And if you don't have a clear path after hearing those things, or you have ADHD and it's hard for you to listen, or whatever else is going on in your life that you don't have time, then go to the Facebook group and ask questions to people. And you know, I always tell people, a year later, you're gonna look back and not recognize yourself, Oh, yeah.
Speaker 1 1:07:05
I mean it, it's incredible. Like, my, like, my daughter, she's, she's five years old, and like, she'll just be sitting and she's like, Daddy, what's your blood sugar? And like, I'll say it, and she'll be like, okay, like, I think you like, she's like, maybe I'll go get your glucose tablets. Like, even just like, the talking, like, it's helping my five year old understand, yeah, like, what's going on? Like, I'm like, I'm not gonna lie. Like, I'll be sitting on the couch sometimes, and I'm like, Oh man, I left my water in the bedroom. Hey, Harper, go get my go get my water. She'll come out with my water and my glucose tablets. And I go, what'd you bring me those four she goes, Ah, just in case, when you start learning and you start caring, you start talking, you open up the world to the other people around you of what's going on, and then then you have this group of people that is also able to help you, like I said earlier, like with my wife, like the the two weeks that she was managing my diabetes, my average blood sugar was 124 or like 125 which, like, I couldn't have done That myself years ago, she's only able to do it because of me listening to the podcast, her listening to what I'm saying, and then she figured out how to use the PDM with me, not being able to see to even show her how to do things. Well, that's
Scott Benner 1:08:10
such a good point, really, is that now she didn't grow up with diabetes. She has no background in it other than being married to you, but you weren't exactly light in the world on fire while you were married. So So she's a proxy, and only understanding it through your retelling of a telling of something. And so just, I mean, I don't know, I'm not frustrated right now, but like, if I start talking about, I'm going to get fresh, like, just listen to the stupid podcast and then feel better. It's free. For God's sakes, you don't have to pay for it. Like, there's ads. It'd be lovely if you listen to them, because that's what keeps the whole thing going. But if you don't like all right, I get it. Just do better for yourself, because the truth is, the better you do, you're going to go back to an endocrinologist who hopefully is not going to fight you, and you're going to and maybe you have to tell them a couple of times, like, what's the secret here? I learned how to do this on this podcast. I've heard that from somebody else, they'll say, then they'll tell somebody about the podcast, and then another person doesn't have Ryan's problems, and on and on and on and on and on. And there are tons of people running around in this world using insulin who don't know what the hell they're doing with it, and they're just hanging on until something goes wrong. And it just doesn't need to be like that. It does not need to be that way. Yeah, all I want for all you is to just be as healthy and happy as possible. And to Ryan's point, that it feels easy now, you know, look, look, and if you're not a sports fan, like this might allude you for a second, but everyone's going to know this guy's name right now. So I'll use it as an example, because he's he and his brother are very famous, but I grew up in Philadelphia watching the Eagles play football. And for the last decade, until last year, we had a center who was undersized, Jason Kelsey. He was too small to be center. As a matter of fact, I remember when they drafted him thinking, like, this guy is going to get playing on his ass and never get back up again. Like there's no way he's going to ever play and he ends up being a Hall of Fame. Center, and when you watch him play, it's because he understands leverage and angles and the little things about football and his job in football that, I think, that other people ignore, and just these little things. So when you look up and you see a guy who's six, eight inches shorter than the guy across from and he's throwing him on the ground like a rag doll. It's not because he's stronger, right? It's because he understands the game. And you watched him play some days, and you thought, man, it looks easy for him, you know, like he he transcended to a place where it looks easy. And I know it's not easy. Football cannot possibly be easy, especially at a professional level, right? But you're watching this undersized Guy No one would have ever pointed to and said, Oh, he's going to be, you know, the best at this. And there he is out there, just gliding along and doing it and that that's kind of how I see you and your diabetes. When you say, it feels easy, like you have enough tools now you know enough things. You know how to approach things from certain ways that it just kind of goes your way most of the time. Am I right about that?
Speaker 1 1:11:02
Oh, I'm 100% right. Like, I think one of the first things like that Jordan told me was like, Hey, if you want to have lower highs, lower your high limit. And then I heard you say it, and like, within the first week, I think I went from, like, my high limit being 180 to 150 and then I told myself, like, once I get to 100% in range at that, I'm going to lower it more, and I'm going to lower it more and more and more. And it's just yeah, like, these tools that you have at your disposal are there, and once you learn how to use them, nothing's going to be able to stop you. Yeah, and you just have to, you just have to do it. Just get out there and do it. Listen,
Scott Benner 1:11:38
forget diabetes. Like you've got the right tools. You get what you expect. Yeah, that's most of life is trying, you know? Like, I don't want to, like, turn this into, like, a Chicken Soup for the Soul podcast, but, like, I mean, there are some things in the world that can stop you. There's no doubt, right? But for the most part, you're the master of how you feel, what you think, what you try, and often, just trying is more than enough. You know, like, people will ask me, like, How'd you make this podcast so big? I was, like, I just made the podcast, right? Like, I just, I mean, there's little, there's little things about it that obviously work for people, and I had to get lucky, and know what they are. But you think, like, oh, he just got lucky. He's got a deep voice, or he maybe it's just a natural, like, conversationalist, or something like that, but that's not true. Like, I've tried to tell people, like I grew up listening to talk radio and listening to, like, skilled conversationalists have conversations with people this way, like, I don't look I'm not looking at you right now. I don't look at most of the people I talk to. I've never met them before. They pop on and we start recording. You know, you just went through with it. You know, you went through this with me an hour and a half ago. But I get on with people. I say, Hey, do you have any questions or concerns before we start normally, they don't, or they want to tell me they're nervous. I say, don't worry. It's going to be okay. Let me tell you a couple of things. You don't need to use your full name, as a matter of fact, if you don't want to use your real first name, first name, we'd be happy to make up a name for you right now. That's fine. Don't use other people's names unless you're sure that it's okay. I can't be your guardrail. So you know, if you get super comfortable and start saying something crazy, I'm just gonna ask you questions about it. I'm not gonna stop you and say, Oh, Ryan, I don't think you should say this on a podcast. And then I go, okay, is that it? And they go, Yeah, I'm like, Okay, well, gather yourself, I'm gonna hit record and we're gonna start. That's as long as I know people before I have a conversation with them. That's not because I'm awesome at this. It's because I've been listening to people talk to each other, like, for 30 years. I have tools, so I've got my tools, and then I decided to do the thing. And now it works. There are days, by the way, that you don't walk in here super excited. You're not like, oh my god, I can't wait to record another episode of the podcast. Like, like, you know, like, there's days where I'm tired or I don't feel well, or, like, right before you and I jumped on, like, Arden's having trouble getting your Dexcom to connect. Like, I have actual problems right now that I need to deal with. And it would be great to say to you, Hey, Ryan, let's do this another day. Like, I don't feel like doing this right now, but that's not true. Like I do feel like doing it right now, and I am going to, I'm going to do it every day, whether I'm sick or tired or it's inconvenient, because this is what I do, like, and I don't know, like, people should put that effort into their diabetes and their health in general. Like it sucks some days, it's easier some days, but this is what I do, and it's a net positive for me when I do those things. And I'm not trying to say I don't like making the pie. I actually I love making the podcast. And I know you probably don't love your diabetes, but you gotta love ease of living and health, right? Is that not a thing that you could focus on? It seems to me, oh
Speaker 1 1:14:44
no, absolutely and again, like over the last 11 months now, like really getting control of it, like everything else in my body feels better, like I feel I just, I feel better with my blood sugars being under, under control, like I, you know? I mean when, when my blood I mean, like a 10.7 A, 1c, that I had in. January is an average blood sugar of 278 Yeah, and now at a 5.7 my last one was a 5.7 like, that's such a big difference of the toll that the interior of your body is doing on itself that now isn't there, it opens up so many other things. And I did not know this until listening to the podcast, but proper insulin makes you gain weight. I've put on like, 20 pounds since I started listening to the podcast. Luckily, I'm active, but over the last month, not being able to do anything from all the surgeries. Like, now I'm like, Oh man, I gotta lose weight. To me, it's like, this is awesome. Like, I'm I'm getting chubby because of because of better health, and now I just gotta fix that
Scott Benner 1:15:39
part. So now you're up to the like, maybe now I gotta look at my calories. Yeah,
Speaker 1 1:15:43
now, yeah, exactly like, now I like, all right, I figured out the insulin. Now, let's figure out everything else, to just continue to live a healthy life, like even putting on the weight. Like, my my cholesterol still good. Like, I'm still good. But I need to, I need to at least continue to continue down this health journey and just, and just continue to do a better job. Because, like, I have people that rely on me every day. Yeah, man, no, I hear you. There's so many people in the podcast that I, like, I give it up to all the parents out there and all the and the people who are caregivers for for their little type ones. And it's just like, I can only imagine. Like, I know it's hard for me. I know that it was hard for my parents. Like, I feel for you and like, just, know, like, the group experts, the whole group, like, it's not just the group experts that are there for people. There is, there's 50,000 people in that group, in that Facebook group, that are there for you, get on, ask questions and and just, just take it for what it's worth. But maybe, maybe, maybe there's one person in the in there that will answer something in a way that somebody will be able to resonate with. And it might not be it might not be you, Scott, it might not be me, but it could be anybody. And I just, and that's like when I try to answer questions, I try to answer the question, give advice, but then also tag the podcast that helped me with it, because I know that I'm probably not as good at describing it as what you and Jenny were in the episode about fat and protein, right? Like
Scott Benner 1:17:00
there's so many you taught your wife, like, by bugging the hell out of her. Sounds like, Oh yeah,
Speaker 1 1:17:07
you know. But like, for me, like, part of it for me, like an like, not to get in a whole nother, like conversation, but like, learning about diabetes and how, like, have being a diabetic is like, a bigger chance for my daughter to get it. Like, it's important for me to really learn everything, because if she does get it, I want to make sure that I that we're able to take care of her properly. Yeah, and, and the time that I spent with my wife asking to take care of my diabetes. Like, I know that if, if my daughter did get it for some reason, like, by chance or whatever, she's gonna be fine, right? Like, I'm not gonna be worried about it. I'm not gonna be like, I mean, don't get me wrong, I'll probably worried. But like, I know that I already have the tools. I know how to make it work, and I know what, what technology to get to make to just make it easy for and like, as many times as she's like, I mean, she's told me, Oh, Daddy, I want diabetes. I can be like you, and I'm like, you don't want
Scott Benner 1:17:51
it. I promise you find another way to be like, Daddy, make a cabinet. Yeah, yeah.
Speaker 1 1:17:55
Pick, pick something else. But you know, she sees problems with she sees my eye problems. And like, she said, like, she said, like, I don't want it, Dad, I said, I don't want you to have it either. Like, but at least I know that, like, if something happens that, like, she's gonna be fine. You
Scott Benner 1:18:07
know what to do? Yeah, I appreciate that. I really Domino. I'm gonna stop at that, because I think that's a I think that's an awesome way to stop Brian, I can't possibly thank you enough for doing this. I know it takes a long time to get on the podcast and everything, so I appreciate it. I appreciate the effort and time that you put into helping other people. I appreciate knowing that this was valuable for you. Because, like I said, I sit in a I'm in like a 10 by 10 room, like by myself, pretty much, like 10 hours a day making the podcast. So I'm only able to do what I think is going to be valuable. But I almost I need more touch points like this. You know, that's why hearing back from people is is really helpful. So I appreciate your feedback too.
Speaker 1 1:18:49
Well. Thank you, Scott. I really can't say it enough. Thank you. Thank everybody in the group and just this is awesome. It's
Scott Benner 1:18:54
absolutely my pleasure. I had a great time talking to you. Hold on one second for me. All right.
Speaker 2 1:19:02
You stay tuned
Scott Benner 1:19:07
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#1414 Great Flood
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Erin’s 10-year-old daughter, Kylee, was diagnosed with type 1 diabetes two years ago. Erin and her husband struggled with the diagnosis, asking, "Why us?"
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Welcome back, friends. You are listening to the Juicebox Podcast.
Karen's daughter was diagnosed two years ago. Her and her husband struggled at first with the diagnosis, asking why them? 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, if you're a US resident who has type one, or is the caregiver of someone with type one, visit T, 1d exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com I know that Facebook has a bad reputation, but please give the private Facebook group for the Juicebox Podcast, a healthy once over Juicebox Podcast, type one diabetes. The group now has 47,000 members in it. It gets 150 new members a day. It is completely free, and at the very least, you can watch other people talk about diabetes. Did you know that, despite the increase in CGM use, only a third of people living with diabetes meet the recommended guidelines for healthy glycemic levels. Today's episode is sponsored by Medtronic diabetes. Learn more about hyperglycemia at Medtronic diabetes.com/hyper today's podcast is sponsored by us med us, med.com/juicebox you can get your diabetes supplies from the same place that we do. And I'm talking about Dexcom, libre, Omnipod, tandem and so much more us, med.com/juice box, or call, 888-721-1514,
Erin 2:11
well, my name is Erin, and I'm talking to you today because my daughter Kylie was diagnosed with diabetes type one, almost Exactly two years ago. How old is
Scott Benner 2:22
she now? She is 10, and she was diagnosed at eight.
Erin 2:27
So she was diagnosed actually two weeks after her ninth birthday.
Scott Benner 2:30
I see okay, and you are American, yes, you said the diabetes part. Like, do you ever do you know people who say the date backwards? Oh,
Erin 2:45
you did, yes. That's funny. I didn't even think about that you
Scott Benner 2:48
said. You said it like you were charting it. Does that make sense?
Erin 2:53
Probably, maybe my mind, I do kind of that chronological order, where I date things. It's really
Scott Benner 2:57
interesting. Yeah, diabetes type one. I was like, oh yes, this is, this is like a scene from Grey's Anatomy. This is very exciting. Okay, well, I
Erin 3:05
work in a dental field, so in my mind, that's kind of how I guess I classify things as well,
Scott Benner 3:10
very nice. Felt like I heard that that's all any other type one in the family, or other autoimmune stuff.
Erin 3:18
No. So she was a surprise to us. We had no we were blindsided. None of our family, okay, we asked all the family, and nobody in the media. We had a couple, maybe type twos, and like the great, my great, great grandparents, but nobody in the near family. My mother in law is adopted, and she does not know anything about her background, so there's a possibility there. But other than that, we we were completely blindsided.
Scott Benner 3:47
Got you I understand, okay, in hindsight. Now, when you look at your own health, do you see other autoimmune types of stuff like celiac or Hashimotos or stuff like that? No, no. Okay. How many other kids or no one could I
Erin 4:01
do? I have two. I have one other, and he's boy, and he's gonna be 13, and at the beginning of next year. So
Scott Benner 4:09
are you in like, like, your late 30s? I am. That was that upsetting to you. I don't
Erin 4:17
know if I'm ready for it. I just turned 39 and I'm like, okay, hitting those 40s.
Scott Benner 4:23
Just loved your response. You're like, I am. Yes, I How did you know I look so young in person,
Erin 4:30
right? Exactly? I was like, dang it, he guessed, you know.
Scott Benner 4:33
So we have a bit of a short window for you today, so I'm gonna do a little thing where I just kind of jump forward a little bit and ask you what it is that you were interested in coming on the podcast to talk about well, so
Erin 4:46
the reason why I kind of reached out to you was Kylie had it very interesting, and she had a lot of things happen to her very quickly, on top of her diabetes diagnosis. And I kind of want. To talk to you and in hindsight, now, after it being two years, I hope that what I can tell people gives them a little ray of hope in all aspects, because we did. We were in a huge slump for a while, our life got turned upside down. So having no idea that type one was even a possibility. My daughter all of a sudden, you know, she's playing softball. She's very, very active. All of a sudden, she is tired. She's exhausted. She's, you know, we are on her about, you know, why can't you focus? Why can't you do all these things that she normally, you know, would do? Because we were clueless, and we ended up having a flood in our house, which we have no idea how, why or what, but it took out her bedroom, it took out her bathroom, it took out the hallway, and that's how we found out we had no idea about any of the other symptoms. They weren't a thought process whatsoever. And she started going to the bathroom every 20 minutes after they, you know, pulled all the plumbing, pulled everything from our bathroom, and she was coming into our master bedroom, and every 20 minutes, I told my husband, I said, That's so strange. He said, You know, maybe she has a UTI. Maybe she has something, again, type one diabetes was not on our radar. So we finally got her a doctor's appointment. And the day of the doctor's appointment, we had to drive 45 minutes to get there. And the doctor is a good personal friend, and she took her blood sugar, and she's like, She's diabetic. We're like, I just cried because I was like, how? Like, How is this even possible, right? So in our area, we had two choices. She was like, you can either stay here in this town and go to the hospital here and they will fly you to one of the bigger cities. So I live in northern New Mexico. So my choice is either Denver or you drive back home 45 minutes, and then they're gonna fly you from your hospital to Albuquerque. So you need to decide, you know, where do you want to have her end appointments for the rest of her life, at least until she's 18? There was so much information. I was like, I'm doing what? Yeah. So we
Scott Benner 7:12
decided, am I flying to Denver Exactly? Yeah,
Erin 7:15
exactly. That's an eight hour drive for us. And I'm like, Oh, I don't you know that commitment is a big commitment. Albuquerque is three and a half hours. That's still a big commitment. We don't travel to Albuquerque very
Scott Benner 7:27
often. You don't at that point even understand, I would imagine, like, why is it i? Why can't you help me? Like, why am I going somewhere else? Right? This episode is sponsored by Medtronic diabetes, a company that's addressing hyperglycemia head on, Learn more at Medtronic diabetes.com/hyper and now we're going to hear from Medtronic champion Maddie. Hi.
Speaker 1 7:48
My name is Maddie Fisher. I was 12 years old when I was diagnosed. It was really, really hard through my adolescent stage. I hated diabetes. Sometimes I would cry and just say, like, Why me? And I think you know, just from hearing from people in the community that a lot of people have that very similar story. What did you find that helped? I was able to see all the latest technology that other type one diabetes, especially in the Medtronic champion community, were using, and I stumbled across the N pen. And this girl was using the N pen, I just messaged her tell me all about this. I called Medtronic, and the lady that I was talking to, she's like, Yeah, I totally understand.
Scott Benner 8:29
It feels like meeting more people helped you. Yeah,
Speaker 1 8:32
I definitely did. You know, I used to hide everything, and now I wear it with pride. What
Scott Benner 8:38
have you learned since you've been wearing your technology openly, there's great
Speaker 1 8:42
support. And then, you know, you have Medtronic who just elevates that support.
Scott Benner 8:47
Prolonged hyperglycemia can lead to serious health problems and long term complications. Learn more about hyperglycemia at Medtronic diabetes.com/hyper
Erin 8:58
Yeah. She was like, just, you know, there is absolutely no pediatric endocrinologist in this area. I was like, what like, how do we not have that hair? So we drove the 45 minutes back home, and my daughter's in the back seat just falling asleep, like she couldn't even keep her eyes open. Her blood sugar when we were at the doctors was 500 and so they sent us back. And by the time we got to our local hospital, you know, they had to go through all the protocol again, even though it just had a doctor called ahead, right? And they were like, it's not reading on our you know, machine. We need to do blood work. So we sat in the hospital for almost four hours with little to no information. Our hospital is a small, rural hospital, and next thing we know, they're like, we're we're sending you to Albuquerque. And we're like, okay? And they're like, well, she's in DK, so we need to send you guys like, now. So can
Scott Benner 9:55
I ask a question? Had you sat there long enough that you could have driven to Albuquerque? I. Yes, yeah, okay, oh
Erin 10:01
yeah. My husband was able to, as I sat in the hospital, he was able to come home from work, change his clothes, come to the hospital and hang out for another hour. And he he works about 45 minutes out. So we were very frustrated. We were like, you guys have any information? The nurse literally came in and was like, did the doctor tell you she's in? DK, we're like, no. Nobody's told us anything. They took her blood, they left. We really haven't got anything. So she was air flighted out, and we went to that hospital, and they were on it. Long story short, we were there for three days. We got a lot of information, and then, you know, sent home, and we've been working on it. Our endo has been very happy with everything that we've been doing her first appointment. So when she was diagnosed, she was at four teen point something on her a 1c is what they were averaging at the hospital. And then when we came back for her like, three month checkup, she was at 6.4
Scott Benner 11:00
when you look back, how long do you think this was going on for? Honestly,
Erin 11:03
to think about it this time frame, plus two years ago, just so we had, yeah, a family vacation around Fourth of July. She had an all star softball game that she was playing like this weekend two years ago. So we think it was at least probably four months by what they're estimating, the ANC, and just looking back at all the symptoms that she
Scott Benner 11:27
had first, that you saw along the way, when you can look back at it again, yes, and one of the
Erin 11:31
ones that I see and I process now that I really wonder about is she had a lot of abdominal pain months, Months before we noticed, you know, the thirst, the urination, all of that, I would guess, she would come in every night and be like, my stomach just hurts, and we're like, Well, do you need to use the restroom? You know, maybe you're eating things that are, you know, upsetting your stomach. And she would just be in knots. And then it would go away. And couple days later, same thing, and then it finally, it went away, and we didn't think much of it.
Scott Benner 12:04
Interesting. I wonder. I'm gonna think about that and do a little research while you're talking on the on the stomach pain idea, because people bring it up all the time, I never really dig into it. So, okay, so what is the impact on her? How does she respond to this? Oh, I mean,
Erin 12:20
she has been a trooper. She does so we're MDI. She's continued to be MDI. She does not want to pump. She does use a CGM. We did switch over to the g7 which she does really like due to the size of it. My daughter's only 72 pounds. She's very thin, very muscular. It slows her down. And when it slows her down, that's when she's like, I wish I didn't have diabetes. Oh,
Scott Benner 12:45
I see, yeah, does she talk about it? A lot.
Erin 12:49
She does, and she we've been very blessed. She is willing to talk to other people about it. We have to, you know, we want everybody to know, so that if we can't watch her or see her, hopefully something ever happened to her, they would be aware. She has some great friends at school that have known from the beginning, you know, and they're like, let's go to the nurse. You just are acting funny or, you know, yeah, they're very receptive. But she, she's really good about letting people know, and not being afraid to tell people about it, you know. And she's like, Yeah, I have diabetes. I
Scott Benner 13:25
wasn't sure when you first said. I thought when you said she was good at talking, she was open to talking to people about it. I thought you meant therapy, but you just meant, oh, friends in her life and stuff like that.
Erin 13:35
Yeah. Okay, yeah. Thankfully, as of right now, I don't see any mental like frustration or load or anything that would need therapy again, she's 10, maybe when those hormones kick in and all that, she might need some help, but no just speaking to people in general, or people asking her questions, you know, she does her injections in public, will look at her, you know. And if people ask, you know, she's like, I have diabetes, so she's, she's very vocal about it. Okay,
Scott Benner 14:05
do you How are you guys handling it? You're the rest of your family, your your other child, your husband, yourself.
Erin 14:11
My husband, curses every day about it. Wants to know why, why? Why her. I think I spent the first three months of this diagnosis, just in tears every night, you know, just streaming tears down my face, trying to figure out, like, why? How my son, he's done very well, but he definitely has told people, you know, my my sister is my parents favorite. And they're like, Well, why do you say that? You know, my mother in law quartered me one day, and she's like, just, you know, your son? Know, your son asked me why Kylie's your favorite? And she's like, and I told him, it's not that, you know she's their favorite. She just takes so much of their time. Some days it's really hard for him, but he takes it really well, and he's been, honestly, very awesome. And. The fact that he's picking up and learning and he's helping us when, you know, we have to go to work, and I need somebody with her for a short period of time.
Scott Benner 15:07
So it's interesting, is that that that would feel like favoritism when to your daughter, it feels like unwanted attention? Probably, I don't want to be doing this, you know? Yeah, and by the way, if something else, it would just be something else. In case you're wondering, you weren't going to get through parenting without the kid being upset about something. So you're fine. This is what it is. Yeah, I do think that no matter how well it seems, that everyone else is adjusting, and I'm sure everyone will adjust, but there's still impacts. Like, you can't just say, oh, there's no impacts. Oh, my son's 24 now, and he'll talk about, like, you know, you'd be on your way to do something. And then all of a sudden everything stopped. And then we stood there for 20 minutes, like, making sure Arden was Okay before we did something, or that kind of thing. And that obviously stuck with him, because he's older now, and he still remembers
Erin 15:59
it, you know, yeah, we do a lot of you know, my husband will tell my son today me and you are going to go out on the boat and go fishy like your mom has, Kylie me, and you're going to go spend time, and we're having to make a conscious effort to make sure that we spend time, which is horrible. It sounds horrible that you have to make a conscious effort just to spend time with one child, but we want him to know, especially now that he's mentioned it. It's not that, you know she's our favorite we tell her she's our favorite daughter, but you know he's our favorite son. That's just how it is.
Scott Benner 16:33
Well, you know what? If it wasn't this, it would have been softball or something else. You're always at softball, but you know, you would have just, trust me, does he play a sport. So he
Erin 16:41
has, he does. He's played baseball since he was little, but he's getting to that teen, teenage year where he's picking and choosing. So he plays soccer as well. So he does a little bit of everything, and then he loves to bass fish. So we try to get him out there doing that as well. Don't
Scott Benner 16:56
you live in a desert? Where is he bass fishing?
Erin 16:59
So I do live at a desert. We live in the high desert, technically. So we actually have a really nice, very large lake 45
Scott Benner 17:06
minutes from us. Oh, it's lovely. Yeah, I love that. The Great Flood is how you were able to figure out she had diabetes, just because it diverted her to another bathroom. That was all right, yeah, that is it. You were 100% correct. A kid was peeing a ton before, but you didn't. Hey, is there a chance she she flooded the she flooded the bathroom. Was that pea or water you saw going through the house? Oh,
Erin 17:26
oh, yeah. So we had the great flood, and then we had the tortilla incident, where she bit a tortilla and took one bite out of us. We had this little, teeny, tiny bite mark in it, and then the rest of it was floating in the toilet, in my toilet. And I was like, Kylie, did you eat a tortilla in the middle of the night? And she was like, No, we're like, What do you mean? No, we're like, this soggy piece of evidence that I have to, like, fish out of my toilet.
Scott Benner 17:50
She was that hungry during the middle of the night that she
Erin 17:53
Yes, and she didn't remember that she ate it. So she was coming to our room to go to the restroom. On top of it, she was stopping to get food, and then not remembering the food. And then I was like, I need to get her a doctor's appointment really fast. I don't understand this.
Scott Benner 18:07
She's sleep walking tortillas before we move on, Aaron, stomach pain prior to type one diagnosis can be due to several factors. This, of course, is from chat, G, P, T, 4.0 D, K is the serious complication of unrelated diabetes, but blah, blah, I don't think it was that in the because it happened so far. In the beginning, gastroparesis, probably not that I would think that she didn't have nerve damage from it, but high blood sugars, elevated glucose levels, can affect the digestive system, leading to abdominal pain and discomfort. And then the other eye possibilities for pancreatitis and an infection, but I bet you it's just the high blood sugars creating that problem. Yeah, that was kind of our thought process on that. Yeah, let me ask you another question about the time spent kind of crying and wondering why that happened to you, and you know, that kind of to your daughter, etc, you're never going to come to an answer. So is that a thing you give away at some point, or do you still mull it over? I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years, though, because we began using us Med, you can too us med.com/juice, box, or call 888-721-1514, to get your free benefits check us med has served over 1 million people living with diabetes since 1996 they carry everything you need, from CGM to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, libre three, Dexcom, g7 and pumps like Omnipod five, Omnipod dash tandem and most recently, the eyelet pump from beta bionics, the stuff you're looking for, they have it at us. Med, 88887211514, or go to us. Med.com/juicebox, to get started now use my link to support the podcast. That's us, med.com/juice, box, or call 88872115140,
Erin 20:09
we definitely still mull it over. My, my husband's family is very Southern Baptist, and we, you know, we sit there and we say, you know that there's a plan. There's a plan. We don't know the plan, and we try to not mull over too much about it, but it's very hard. It is very hard, as a human, to just accept it. Just accept it, yeah, and knowing that this is going to affect her the rest of her life. You know, the future that I saw for her is not the future that I see for her now, you know, and that's frustrating,
Scott Benner 20:43
yeah, no, of course, we talked about this recently. First of all, I think, I think Baptist Jesus's plan is just for you to spend a lot of money on CGM and pumps and things like that. Over the years, they're like, you know, what'll keep them working? What if they had more bills get them going? But quite seriously, like we were talking recently, gosh, about this idea of a normal life. Like, because we talk so much about you can live a normal life with diabetes, which I fully believe, right? And I watch my daughter do it, but no one's living a normal life. Like, do you mean like, like, what would normal be exactly? Because I think when people say normal, they mean unencumbered, true. You know what I mean? Like, I get to go do the thing I want to do, and that happens without me being sad or upset or inconvenienced or anything else that I just wanted to live a normal life. I think that's how a lot of people think about that phrase. And you know, I'm not going to say obviously, like, Oh, if it wasn't diabetes, it would be something else, because you get diabetes and something else. So then I love the positivity of you can live a normal life with diabetes, because I do believe that. But you also can't argue the fact that it's not normal. You know what I mean, like, it's, it's modified normal, new normal. Call whatever you want, right? But so I think you can live unencumbered with diabetes, you know, if you understand some things, and you have some luck, and, you know, decent insurance and, like, etc, like, all the things that you would need to accomplish that. But I would never disagree with anybody who said, like, this isn't normal, or this isn't what I expected, and I'm upset by it, the next step, 100%
Erin 22:26
not what we expected, not what we wanted for her. We didn't want her to have that extra junk to deal with, right? Our thought is, as a female, my thought is, she better find a partner that's willing to step up, because it takes a lot, and I hope, you hope that somebody will do that for her. You know, when she gets to that stage in her life, you know, as for everything else, we want her to live very normally. We we keep everything very normally she is in all the sports that she was before. We've had to get extra help past our Endo, and we've listened to your podcast. I mean, every ounce of information that we could absorb to allow her to have everything as normal and as pre diabetes, diabetes, you know, yeah, everything as before pre flood. We'll call it kind of that extra little Yeah, pre flood, we have, you know, everything that is done prior to and we just tried to tell her, we tell her, you know, you have to just take care of BDS first. Always be these first, but the rest of the time, be normal. Yeah. We want her to be normal and enjoy her life like a normal 10 year old kid. And
Scott Benner 23:36
I think what that means is Don't wallow. Maybe, and wallow is a bad word because it makes it sound like you're doing it on purpose. But I don't mean it like that. I mean, don't stay in this part, which is really the Listen, it's a matter if you break up with your boyfriend when you're, you know, 16, or you lose a job when you're 35 or whatever, like life's gonna go poorly. A number of times, you can't stay in that spot, right? You have to keep moving forward. There are all these platitudes you could use to, like, make this idea, but you just can't stay here in this and just keep re adjudicating. This isn't fair. You know, also, I did enjoy your point about a partner. I don't even you said as a girl, and I wondered what you meant by that. But because, I kind of think, because I kind of think no matter what, but I also don't have the experience of having to date 17 boys before I find a decent one. But I think there are women like that too, like, I think you we mean like, find an emotionally mature, reasonable person who's giving of themselves and willing to shoulder another person's burden. Is that what you mean? Yeah,
Erin 24:45
and so I mean by as a girl is, for me, as as a woman, the world is very it may be I have a lot of rights and things like that, but I still, you know, I still need a husband or a partner that. Is stable that, you know, Will and can take care of me, because there's a lot of things that I can't do, you know, I think about if and when my husband becomes that age. He's much larger than me, so I'm going to struggle to help take care of him. So I need to find, I want her to find somebody that is able, body, mentally stable. You know that can physically and emotionally take care of her? Yeah? Because we won't always be here to do that for her. That's
Scott Benner 25:28
the That's what I was trying to get to. That's the feeling you're having, that I have to live forever now, feeling Yes, yep, yeah, she was
Erin 25:35
she we're not allowed to die before she is, because we will be taking care of her forever. We've already told her we'll just blow out the other side of the house and refurnish it for her and her husband, and they can live with us the rest of their life. Yes, that'd be lovely. We'll be taking your hair. We'll take care of her.
Scott Benner 25:51
Don't flush the toilet too much, though, because the plumbing is not great. Hey, the plumbing is good now it is. Yeah, sure, yeah, you're plumbing, and you're and your $15,000 home equity loan, I imagine that you have now it's nice to think about also, I think honest of you and and kind of you to say out loud, because I can hear in your voice, as you're talking, you don't want to say to people, I need help, because I'm a Woman like that's not your intention, but size is an issue at some points, and could be with help once people, I'm literally watching a family member go through this right now, where older people, you know, the husband deteriorated before the wife, and she just, she really can't manage what needs to be managed, and this
Erin 26:37
is something that she's going to have The rest of her life. And, you know, I It worries me. I want her to have somebody that will be able to take care of her, because I know I won't be able to, yeah, and I think that's all that I really am getting at. But
Scott Benner 26:51
yeah, I just can I take a slight, not a complete left turn, but just a slight left turn, because I'm interested in public. Do you feel more comfortable when your husband's with you? Yes, you do for personal safety reasons. Yes, okay. But do you consider yourself like a worrisome person? Like, oh my god, something bad is going to happen? Or no, it just feels like common sense.
Erin 27:13
I was not a worrisome person until my children all I want
Scott Benner 27:18
to do is protect it. Aaron, you broke up a little bit. You weren't a worrisome person before. Worrisome person before your children were born. Is
Erin 27:24
that what you said? Yes, okay. Um, not worrisome. And then when they were born, I just became a nervous wreck. And that's one of the things with Kylie's diabetes that I know that I just I worry about everything with
Scott Benner 27:37
her. Okay? Is that the mom thing that kicks in? Do you think, like, I gotta, I gotta keep everybody alive now, like, I hadn't never thought about that before they babies came flying out,
Erin 27:47
right? Yes, I think that's definitely that mom instinct kicking in, that, you know, I just this world is crazy, and I just, I want my children to be safe. And with that, that just comes in that anxiety and things like that. I know that if, if my husband's there, at least there's two set of eyes on, you know, our children, and it's not just me. And
Scott Benner 28:09
that feeling grew once the diabetes came, oh yes, to kind of incorporate that idea of, what if she gets low and we're not here, what if she can't afford something and we're not hear that kind of stuff. Yes, yeah. I think we all have that feeling, by the way.
Erin 28:25
Seriously, I looked at all of our stuff, and I, you know, I thankfully had some life insurance that I purchased for her when she was, like, two years old, yeah. And they told me they're like, do not ever let us not know that your bank account has changed. You know, like, the account numbers have changed because you don't want this to lapse, because now she can't ever get life insurance because she's diabetic,
Scott Benner 28:47
and that's something, yeah, I remember, listen, you know, I'm not planning the great takeover or anything like that, but we were saved. We're saving money as we're getting older, right? And when we spoke to somebody about how to manage it, they were like, well, what are your goals for the money? And we were like, We would like to leave it to our kids. And they were like, Yeah, but for you, and we're like, No, our daughter has type one diabetes, like, so we would like her to, I don't want to. I'll be dead. So I guess it wouldn't matter, but it would matter to her, and it would still matter to me, if I could see myself in that scenario. I don't want her to be 40 or 50 years old and like, ever have a moment where she's like, I can't afford insulin I can't get an insulin pump? I can't whatever things technology is going to look like down the road, and then the pressure of, if I leave her money, how do I not back to your original point about your son, like, how do I not leave an equal amount to my son? Like, is the last thing I want him to think after I'm gone is that he cared about her more than me. You know what
Erin 29:44
I mean? These things are always a thought in the back of your mind, and you're just like, oh my gosh, yeah, it's it's hard being a parent is what's best for them, and it's so hard.
Scott Benner 29:55
Aaron, without this diabetes, you could have ignored all these big life questions forever. You. Know,
Erin 30:00
and I could always just joke be like, Yeah, I don't like either of you guys.
Scott Benner 30:03
You guys suck. And, you know what, if you don't like the way that sounds, just, you know, get a good job, because you're gonna need therapy, and I'm not paying for it. And, like, and you could have just joked your way through it like everybody else does, and, you know, but instead, now it's like a real omni present, honest to God, issue in front of you. Yeah,
Erin 30:21
fun times. I wanted to tell you one other, it's been a little dark and gray for us for the last two years, and we feel like we're finally coming out. So I just wanted to tell you so, along with the diabetes, so she was diagnosed in October, then July of last year, she ended up having a appendicitis that was undiagnosed. Oh, so the abdominal pain, all of those issues were, you know, in hindsight, we're like, man, what is going on? But she ended up having an undiagnosed appendicitis. They couldn't figure it out. One of the surgeons came up to me, and they're like, I'm sorry. I let her diabetes mask a lot of these symptoms. Her appendix ruptured and she had to have emergency surgery. So she has a scar from the top of her belly button to the top of her pubic bone because they had to go get it. It was under her tailbone. Oh, my
Scott Benner 31:08
God, that's terrible luck for the kid. Yes, she's had
Unknown Speaker 31:13
really luck. Yeah, no
Erin 31:14
kidding. Jesus Christ. That's not even a lie. She has had these she has left in the last two years. So
Scott Benner 31:21
what do you think she if she could give one of those two things away? Do you think she'd say the diabetes or the scar in her belly?
Erin 31:26
I'm pretty sure she would rather get rid of the diabetes.
Scott Benner 31:29
Yeah, okay, let's just wonder. So wait, was this like an emergent thing? Were you like, Oh, she gonna die because you live near nothing? Yeah.
Erin 31:36
So we went in and we assumed, you know, hey, maybe this is appendicitis. You know, she was having pain, but once she starts growing up, we're like, Okay, this is our first diabetes protocol where we don't really know what we're doing. So we went and started getting fluids, and they're like, Uh huh. Just looks like she's having some inflamed lymph nodes. They sent us home. A couple hours later, she brought us right back to the hospital, and then they're like, Well, her, you know, blood sugar is off and she's having symptoms, but, you know, we think it's more of the diabetes. So they kept us for three days. They got her ketones back in order. We got her blood sugar back in order. She was still in pain, but they sent us home again. They said that, you know, those lymph nodes were inflamed. They called it like mesenteric adenitis, or something like that.
Scott Benner 32:25
And, and then we came back and they not spell. We can't figure this out. Is that what happened? Yeah, no, yeah. There was
Erin 32:31
no, you know, we don't know. Attitude. They were like, Yeah, you'll be fine. She'll grow into it. We're like, what she'll
Scott Benner 32:37
grow into, which she'll grow into the abdominal pain. It's
Erin 32:41
something that could be, you know, something she'll have until she's an adult. We're like, why? Boy, I'll tell you.
Scott Benner 32:46
Until I had a wife and then a daughter, I had no idea how quickly when people don't know what to say, when it's about a woman, they just go, that's a lady thing. You'll grow out of that, you know, once you I see, once you have a baby, a lot of that stops happening. Is that your medical opinion? Thank you. People are I'm not this person, like, but I do see this boy. It's easy to just say, oh, that's because you're a girl. You got girl parts, and then they just don't help after that. Like, PCOS is an example. Like, this is a real, serious problem, and the answer to it is bad luck on your part, I guess, yeah,
Erin 33:21
well, and I still feel that's how it is with the diabetes. It's like, nobody has a clue. I feel like I'm explaining the definition of type one diabetes to everybody that asks or come across, you know, yeah, comes across her. They'll ask me, how's your daughter? And they're like, does she has type one or type two? Again, tell me again. And I'm like,
Scott Benner 33:37
type one. And we said, we talked about, yeah, also to connect the two things together. It doesn't matter what your a 1c is. It doesn't matter if it's six or five or eight or nine. If you look like you're trying, a physician goes, You're doing great. You're doing great. So you tell a person with an eight and a half a 1c You're doing great. And for 20 years, they're like, I'm doing great, you know. And then they start having problems. They go, I don't understand. Doctor told me I was doing great my whole life. Oh, yeah, great for, you know, you or, you know, for the amount of effort I thought you could put into it, or the understanding I thought you had. But no one ever says, hey, it's an eight and a half. I love your effort here. You're doing great. But I bet you if we made a couple of tweaks here and there, maybe brought in a couple more ideas. What if we made this a seven, and then once we get the seven, what if we look into getting into the sixes and really try to eliminate the idea of long term complications for you? But no, just You're doing great. That's the end of it. By the way, plenty of doctors who do that stuff, but way too many who don't, is what I'm saying, yeah, yeah,
Erin 34:41
yeah. So she, like, I said, you know, undiagnosed. So she went and had her surgery, and that put her out for a while, you know, because it was major abdominal surgery, yeah. So at that point, she was like, everything in anything in my life has been bad for the last two years. And she's like, I. Want to do any sports. It's softball. Softball caused diabetes. Softball caused my appendicitis. I don't want to play softball anymore. I just and she kind of gave up for a minute, like she was like, over it. She was over everything. Because when we got back from all of that, after trying, you know, all those months, and we were doing really good, and then she had the appendicitis and surgery and then having to refigure out how to get her blood sugars under control again. She was just like, I just, I don't want to. And we're like, you don't want to. She's like, No. We're like, but you like, this girl can't sit still. Yeah. Like, what are you going to do? We finally, we actually found a gentleman in Canada that has diabetes that has kind of, I mean, we are paying him, but he has been pretty much a mentor for her, and been helping us as well, because we wanted her to be active and we wanted her to be busy, and between all the negative that she's had, we wanted her to be positive about stuff, and she finally agreed to play softball again. Now we've we're over our head. So I think we're on, like, tournament number four for she's
Scott Benner 36:06
back on to the softball. Didn't give her appendicitis?
Erin 36:10
Yeah, yep, she's back on. It's fine. Life is fine. I don't understand.
Scott Benner 36:13
What's the magic? What's the magic Canadian that you're working with? What does he like? Like, hook her up to a sled and tell her to pull it, and then it's like, see you can do it like, because I don't understand why they're Canadian and what they're doing. I'm confused, right? Okay,
Erin 36:27
so, like I said, we want her to enjoy life as much as normal as possible, right? So we decided, as parents, we have exhausted, you know, the endo the diabetic educators, we've listened to your podcast. We've done everything that we possibly could on our side as parents. So we had found this guy that could mentor her. He's been type one since he was 11, and he's a bodybuilder, and he had talked about personal training, helping people out, and I spoke to him, and what he's pretty much done for us is give us other ideas, other things, to help us focus her diabetes. He's like, you know, because she's so active, our diabetic educators, we bounce back and forth with so many things. Nothing ever gets explained. We struggle, you know, we've had these weird drops during softball that we can't get an answer for. So we reached out to somebody that
Scott Benner 37:28
it's active insulin. By the way, it's active insulin, if she's dropping during softball, I would imagine, yes, yes. We
Erin 37:34
found out. Yeah. Thanks. You know, to everything. He helped explain it. I guess. Are
Scott Benner 37:38
you telling me that your 10 year old has a Canadian life coach.
Erin 37:42
Yes. Oh, okay, yes, very much. So that is exactly what it is. I see she has a coach. And when we have questions that are just, you know, like, hey, what do you think about this? He's like, Well, you know, sounds like she's just very insulin sensitive. Let's, you know, test this out. Let's see what other things we can do to help, you know, make this
Scott Benner 38:02
I didn't know this was the thing. Can I be a life coach?
Erin 38:06
Well, if you have information, I'm assuming so I think you're life coaching, just in a broader spectrum already. Yeah,
Scott Benner 38:11
I might be doing it already. You might be right. But huh? I mean, after I'm done with the podcast, I mean, like, can I be or actually, could we just turn it into a pot? Or have I already turned it into a pot? Oh, it's hard to know. This is such a meta moment for me.
Erin 38:25
Yeah, but no, I mean, it is true. She, she literally does. She has a life coach that is diabetic, that is a, you know, body building pro carb, you know, all the things that you talk about. But he is MDI, and he takes for a long time, nice.
Scott Benner 38:40
I should take PayPal. Okay, no, hold on a second. This is very cool. I don't know how you found this, and I don't promote coaching, like, through my stuff. So, like, just because I can never know who's the good one and who's the bad one, or I would just ask you the person's name. But anyway, like, you know, listen, if this sounds exciting to you, just just Google Canadian yoked diabetes life coach. I'm sure you'll find the person, but, yeah, I just tumbled down a rabbit hole in my own mind. I was like, Huh? You know, people in my own life, people come to me all the time, they have since I was younger, and they're like, here are my problems. What do you think? And then I'd be like, Oh, I would do this and this, like, I can't remember one of my earliest life coaching moments. I guess I was probably like, 20, and this younger kid, like 17, this is gonna sound crazy to people, but ATM machines had just started becoming a thing. So depending on where you live in the world, Mac machines, ATMs. But you know, money access, where you can go stick a card in a wall and money flies out of it. I know you're all like, yeah, we know what that is. But I'm trying to tell you that I once lived in a world where that didn't exist. So you're even like, holy, how old are you? But when they came out, people had problems with they were taking too much money out of the bank, like it was almost like a compulsive thing. And this young kid, like 17 or 18, he worked at a place where my girlfriend. Worked. I was picking her up one night, and he was complaining to people that he's like, he's wasting all of his money. He's going broke. I turned to him and I said, what's happening? He goes, Oh, you know, like, you see something for a couple bucks. And I go to the ATM and I get $5 out. And then before I know what I'm doing, again and again and again. And I said, Oh, okay. I said, How much is a lot of money to you? And he said $20 and I said, Okay, only ever take out $20 from the ATM. And he's like, but then I'll, I'll use more money. And I was like, No, you won't. You'll go to the ATM less frequently because it'll, it'll stop you. And, like, a couple months later, he came back to me, and he was like, Hey, man, I've been saving all kinds of money because I took your advice about the ATM thing. And I was like, Cool. Like, I didn't really care. I was like, whatever. Like, I just love talking. And I was like, yeah, it's great, man. But then I realized I started looking at it. People come to me with their like, you know, dating issues or about they want to talk about money, they want to talk about the world. And they were always asking me what I thought. And so just now I thought, Oh, maybe I could do that as a retirement thing. That sounds great. Like, I can make some extra money. You extra money, you know, being somebody's Canadian, like, friend, and I'll pretend to be in Canada. I'll hang up like a maple leaf behind me or something. Because Canadians are people think they're nicer. So I think it'll go over bigger. And I'll go a and, oh yeah once in a while, but, but then I realized, I'm like, oh my god, maybe that's what the podcast is
Erin 41:21
it? I mean, honestly, you, you probably are, like I said, just in a broader spectrum. Jesus and this gentleman. I mean, he really, I guess you can call him a life coach, but it's like, once you've exhausted,
Scott Benner 41:30
where else are you going to go when you're out of ideas? Yeah, and I feel like our Endo,
Erin 41:35
our diabetic educators, we're at a loss, we're at an impasse. We just they give us what we need for, you know, prescriptions and paperwork and things like that, but for the day to day lifestyle that my daughter is doing and what we want her to continue doing, we needed more information. Okay, so we found somebody that could live that lifestyle and is, you know, is helping her. Oh, I'm seriously
Scott Benner 42:01
good for you for looking positive and not just sitting around going, Oh, woe is me. This sucks. Like, what are we going to do? I'm out of ideas. Oh, well, let's all just jump in the river, you know. Or, yeah, we're
Erin 42:10
all a little tired of, you know, being sucky. We want life to be a little bit better. We're tired of, you know, the roller coaster. So we want to be more positive. And if we can't find the information here, we started looking elsewhere. You know,
Scott Benner 42:25
I tell people all the time, like, listen, I think the information about management stuff is in the podcast. But if you're a person who doesn't learn by listening, or just can't put two and two together while it's happening, like, I get that too. It's not for everybody. You know what I mean? Like, I think I'm comfortable saying that the way I present it seems to work for a lot of people, but it's certainly not going to work for everyone. And also, I might say something that you're just like, yeah, I agreed with that part, but not with that part. I think that's great too. Like, take the information a la carte. And I love that you went to a whole bunch of different sources and pulled together what you needed. That's fantastic. You know, way not to give up. But really, I'm being serious. Like, that's wonderful,
Erin 43:04
yeah, like I said, I we listened religiously to your podcast. It came up in you know, conversation, hey, try this, you know, try this person. Listen to this podcast. You know, see what you think. But it's like, I'm not gonna lie. Start Talking ratios, things like that, my eyes glass over. And I'm like, I hate math.
Scott Benner 43:26
I hear you so, yeah,
Erin 43:27
trying to, you know, relate that and figure that out. But I think, again, like you said, I think a life coach is probably the correct terminology for him, because, yeah, I mean, that's what he's doing. And he speaks to her on Zoom, he we have a weekly call with him, and he asks her, you know, what kind of questions she has, and we try to get as much information of you know, what he's done or what he's tried to, you know, combat these situations that I my brain cannot pull that information. And I'm like, I know I heard about that once upon a time, but I can't find that information. I just want
Scott Benner 44:01
you to be careful, because eight years from now, I don't want her coming to you saying, Mom, I've fallen in love with a 40 year old Canadian life coach, and I'm going to the great white north. Okay, very careful. I'm teasing. But although, if he can take care of her, I guess you're, you're, you're like, well, there's a lot of the only he was if only this guy was 10, knew all this stuff and could grow up with her. This sounds like a really great match, right? Oh, my god, wow. What a out of the box with how did you come up with that idea
Erin 44:29
to find somebody? Yeah? Well, social media, I guess technically, social media just randomly. You know what? I love, our phones. Once you start Googling, searching, one thing you know, populates all this other information. And social media popped up all these different people that were talking about diabetes and the information that he had coincided with a lot of what you had talked about, and the fact that he was MDI and ball overlap, managing it overlapped. And, yeah, yeah. And that. Why we reached out to him, and he had posted like, Hey, I'm taking on clients. I'm, you know, trying to help them. You know, it's very cool. Better themselves physically. I have the,
Scott Benner 45:09
I mean, it's a rule, I guess, that of how I manage some of this stuff, like, whether it's in the Facebook group or here, I don't promote health coaches because I don't have the time or the inclination to figure out which ones are good and which ones aren't, and I don't want to be the reason you go give somebody 1000s of dollars and then they're like, uh, I got ripped off. You know what I mean? Which I think sometimes people take as, oh, you're just saying that health coaches are all like a rip off. I'm not saying that at all. I'm sure there are great ones, and it sounds like you may have found one. I have a pretty big responsibility, like a lot of people hear my voice, right? So I try to be aware of that, and I don't have the infrastructure to set out and figure out which one of these are great and which one of them aren't. And I don't, and to be perfectly honest, I don't want you having a bad experience and blaming me. So you know what I mean, like, so I just don't do it. But then what happens is, like, a half a dozen times a year I get yelled at by a health coach. I'm not hurting anybody. I'm like, didn't say you are just saying we have a flat rule where we can't, you can't be a health coach and be a member of the of the group. I'm sorry, yeah, you know well, and
Erin 46:18
I feel like now that we're two years into it. I'm glad that we didn't start off with health coach, because it gave us time to figure her out, figure things out ourselves. It was just, you know, now we're to the point where we understand the best of our ability at this point. Yeah, we're only getting so much information from these other sources. What other sources can we pull or, or, you know, or her. And as parents, it's like, well, if it costs me money, I'm gonna still find somebody that's gonna help her. And if it helps her, great,
Scott Benner 46:50
cool. Can I ask you what it cost? Would you tell me if I asked you what it cost? I'm trying to think what it cost. I'm trying to think I'm so interested if you're gonna be embarrassed, or if you're just gonna tell if you're gonna be like, Oh,
Erin 47:02
actually, I'm not. Embarrassed at all. Like I said, you know, as a parent, I'm like, I would pay for what we're everything that I owned, yeah, to find anything to help her. So I think I want to say we're doing four months and it's like, $800
Scott Benner 47:16
Okay, I want everyone listening to send me $800 right now. Okay, that's it. Of advice, yeah, and just figure out where I am or whatever. Send me $800 and we'll all call it even, okay, and that'll be that I just, I have to tell you something. Aaron, if everyone sent me $800 right now, I'd be wealthy. That's what I'm looking for. I'm just, please don't send me money. I'm just joking. I want to make sure you're done asking everything you've asked, saying everything you want to say, because I have a question that's outside of our conversation that I want to record. So I don't want to run out of time and you have to go help people help make sure you've said everything, or is there anything left? Yeah,
Erin 47:53
yeah, no. Like I said, I we have been in a very dark two years, and with my daughter, we are finally feeling that things are getting much better. And you know, the time frame of this phone call just worked out really well, you know, because when I first set up this call, no, we did not have our Canadian life coach at that point in time, and it was post surgery, so I was in a very dark, mad, upset place, you know, damn diabetes, damn appendicitis. You know, life is just kind of key, to be honest. I'm very positive right now. I'm very happy she's thriving. And that's that's the most important thing as a parent, is having her thrive. I like the quick turnaround. Having a life coach for her has been great. It's been helpful for us. And all the information that we've gathered from you, it really does help. Yeah, but to be positive, seriously,
Scott Benner 48:45
very cool that you figured something out and that you went from like, where you were when six months ago. You're like, I want to be on this podcast, because everything sucks, and I gotta tell people, everything's fucks. And now you're like, hey, everything doesn't suck as much. And I think you know, you'll hear me tell people all the time that, um, things get better much more quickly than you imagine. And like, you know, in this moment around diagnosis, or while you're trapped in those feelings, you think, this is the rest of my life, and all these things you describe about how your son feels and how your daughter feels, and what happened to softball. And, you know, why is this happening? You think, oh, this is how I'm gonna feel forever, but it's just not true. Like you. I always tell people, a year from now, you're gonna look back and think I don't even recognize myself anymore. And you you got to that, so that's very cool. Yeah. Thank you. Really. Excellent. So now here's my question, you work in a dental office? I do. You don't have to say, where do you clean teeth? Or are you an assistant, or are you a dentist? I'm a dental hygienist, so I clean teeth perfect. I'm going to ask you a question, and you answer me honestly, if you can. Okay, is it a scam when you clean my teeth? Because here's what it feels like happens. It feels like you take a spear and you jam it down between my tooth and my gum line, and you go, Oh, bleed. Saying you're going to need trays, because everyone thinks, yeah, what's bleeding? Because you just poke me with a needle. And then they say things like, there's a gap here. This one's a three, this one's a two. We don't we just don't want any fives. Oh, there's a bleeder, but it's a four. But you're saying that while you're poking me with a sharp piece of metal, are you just trying to are you trying to steal my money and get a deep cleaning because the insurance doesn't pay for it? You want a little cash? Go ahead and tell me the truth. That's
Erin 50:27
hilarious. So to be honest, I am not that kind of hygienist. I I don't like to diagnose that way, but to tell you the truth, the little probe that we use is blunted, so it's not sharp, it's not a spear. So if you are bleeding, that means that you do have inflammation underneath your gum line. And I tell people, think of it like an ulcer. It's fine until you start touching it or rubbing it, and that's when it bleeds. So it's incognito until I start rubbing on it, is technically what I do. I love that
Scott Benner 50:56
you said rubbing on it. That was very creepy, parents like until I start rubbing on your mouth, and then you'll know what's going on. Yeah, yeah. No, wait, wait, wait, wait, hold on. There's people have a lot of questions here. I was just talking about this with the editor the other day. He's listening to it now, going, oh my god, we did talk about that months ago. That's hilarious. What about the trait like, what? Or hold on, what is the inflammation a sign of besides inflammation, is it a sign of anything else? So it's just
Erin 51:21
a sign that you have pretty much a bacterial overgrowth underneath your gum line, and that it causes infection, and that infection causes bleeding. So bleeding is an indicator of infection or irritation. And is
Scott Benner 51:33
that going to kill me? Because they make it sound like I'm gonna have a heart attack because of it. So just
Erin 51:37
like you talk about with diabetes, it's not gonna kill you tomorrow, but long term, you will have complications. Yes,
Scott Benner 51:44
I'm gonna die because I have a four pocket in my tooth by my molar. I got you now, and brushing doesn't help. It does flossing, flossing,
Erin 51:53
water, picking, yes, that's about the only thing. And getting your teeth cleaned is the only thing that gets that bacteria out
Scott Benner 51:59
of there. Okay? And what about when they charge me a million dollars to make a mold in my mouth and, say, squirt some gel in this and then stick it in and hold it in there for 10 minutes and use your trays or whatever? Is that a thing you sell, or is that a scam?
Erin 52:13
I personally don't do those. I've heard about them, so I couldn't tell you exactly when it comes to that. But I hate to tell you, dentistry is a business too, and everything is expensive.
Scott Benner 52:25
I don't mind it being expensive, if it helps me. I don't want to have a heart attack. But like I'm saying, are the trays like, are they snake oil? Or do you think they really do something? I
Erin 52:34
think they use peroxide in them, and peroxide helps to oxidize the bacteria. And in that aspect, it does help.
Scott Benner 52:42
I don't love your answer. Okay? I feel like if I stop this recording, you're going to be like, Scott, go get your money back for those trays. Break the front window if you have to. They owe you, but I don't, but I feel like you don't want to say it now. So the real answer is, I mean, I want to be clear. I do brush my teeth, but Brush, brush, floss and water. Pick, like, I should jam like, down the side with some like, when I get the deep clean, do the deep cleaning with the water. Do you do that? I do,
Erin 53:09
but just a water pick, like, the ones that you see at the store that just are, that stream of water flushing that underneath there brings that oxygen into those pockets. And with the oxygen in the pockets, it helps decrease those bacteria. Got
Scott Benner 53:21
it my last question, because you do have to go help somebody right now at work, why do dental hygienists talk to me while they're in my mouth?
Erin 53:29
Because you're a captive audience, and we don't have anybody else to talk to, and because we say everything exact same all the time, like it feels like scripted. I tell everybody to floss. I tell everybody to brush. I tell them kind of nice to have somebody that doesn't talk back to you. You just talk to
Scott Benner 53:45
them so you're not expecting me to reply.
Erin 53:47
No, no. It's a direct like, are you flossing? And then wait for my fingers to leave your mouth, and then please reply. But if I'm just telling you about my kid or something like that, a little, you know, I little eye contact or a little head nod, works just fine. Okay, okay. All
Scott Benner 54:04
right, they're listening to me. I feel a lot of pressure in that situation. I'm like, this is a deep question. I have answers. Hold on a second. Oh, that's why I'm in there. So long. All right, I'm just gonna shut up next time. Okay, Aaron, thank you. Go clean someone's teeth. All
Erin 54:16
right, Scott, thank you so much. Take care. Have a good day. You too. Bye. You this
Scott Benner 54:20
episode of the juice box podcast was sponsored by us Med, us, med.com/juice, box, or call, 888-721-1514, get started today with us. Med links in the show notes, links at Juicebox Podcast com. Today's episode was sponsored by Medtronic diabetes, and Earlier you heard from Maddie, who shared with us what finding Medtronic meant for her. Learn more about hyperglycemia at Medtronic diabetes.com/hyper. Hey, you listened all the way to the end. You might want to know more about the Juicebox Podcast. If you do, go to Juicebox podcast.com scroll down to the bottom and subscribe to the Juicebox Podcast newsletter. Each week. You'll get a rundown of the shows from the past week, just in case you missed something and you think, Oh, I would have loved that. Now I know if you're ready to level up your diabetes care, the diabetes Pro Tip series from the Juicebox. Podcast focuses on simple strategies for living well with type one. The Pro Tip episodes contain easy to understand concepts that will increase your knowledge of how insulin works and so much more, my daughter has had an A, 1c, between five, two and six, four, since 2014 with zero diet restrictions, and some of those years include her in college. This information works for children, adults and for the newly diagnosed and for those who have been struggling for years, go to Juicebox podcast.com and click on diabetes pro tip in the menu, or head over to Episode 1000 of the Juicebox Podcast to get started today with the episode newly diagnosed, we're starting over and then continue right on to Episode 1025 that's the entire Pro Tip series. Episode 1000 to 1025 thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Hey, what's up everybody? If you've noticed that the podcast sounds better. And you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.
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