#1384 Misdiagnosed and Misguided
Heather, 50, was diagnosed with T1D 18 months after an initial T2 diagnosis.
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Scott Benner 0:00
Hello friends, welcome back to another episode of The Juicebox Podcast.
Heather is 50 years old. She was diagnosed with type one diabetes after she was misdiagnosed with type two diabetes, that process was painful for her, and we're going to talk about that today. 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 use my link drink AG, one.com/juicebox you'll get a free year supply of vitamin D and five free travel packs with your first order. And if you go to cozy earth.com and use the offer code juice box to check out, you're gonna save 40% off of your entire order, and that's in time for the holidays. Get over there. Now, if you are the caregiver of someone with type one diabetes or have type one yourself, please go to T 1d exchange.org/juice, box and complete the survey. This should take you about 10 minutes, and will really help type one diabetes research. You can help right from your house at T 1d exchange.org/juice, box. And while I don't ask often about this, there is a public Facebook page for the Juicebox Podcast. If you go give that a follow, that would be awesome. It would really help the show. There's also a private group, which I talk about a lot, but go find that public page too. The episode you're listening to is sponsored by us, med, us, med.com/juice, box, or call 888-721-1514, you can get your diabetes testing supplies the same way we do from us med. This show is sponsored today by the glucagon that my daughter carries, G VO, hypo, pen. Find out more at gevoke, glucagon com, forward slash juice box.
Heather 1:58
My name is Heather. I was diagnosed with type one a year and a half ago. Obviously, misdiagnosis is type two first. Like everyone else,
Scott Benner 2:07
how long was the misdiagnosis for?
Unknown Speaker 2:09
So again, that's
Scott Benner 2:15
you think. We'll, we'll figure it out as we talk. Go ahead. Yeah.
Speaker 1 2:17
I mean, I'm trying to think back. I got confused with that question of like, from like, the dka ICU visit. It was about a month before I got into an end up, which was quick when I got the correct diagnosis. But I had gestational in 2012 and of course, when I look back now, I'm like, Ooh, I had symptoms from like, 2014
Scott Benner 2:44
Yeah, well, if you have gestational And how old are you right now,
Speaker 1 2:47
I'm 50. Okay, so I was a later mom. I was, I was just at the end of 38 when I had my kids. I have twins. Oh,
Scott Benner 2:56
okay, so you had twins, and you were 38 you had gestational with them. So at 49 when you show up with diabetes, they're just they, they just say, Oh, you have type two correct, because that's the expectation. Okay, are there other autoimmune issues for you or your family? So I
Speaker 1 3:12
have twins, and they're identical, and the one had has vitiligo, and his showed up probably like, maybe when he was two, I started to notice it, and my mother had it as well, so I knew what it was. Yep,
Scott Benner 3:26
your mom has an autoimmune issue. One of your twins does vitiligo correct, okay? And how about thyroid?
Speaker 1 3:34
Nothing that I know of, but I know that's like a tricky one, right? I
Scott Benner 3:39
mean, any super tired people in your family or can't even me, can't digest their food, hair falling out? Okay? Yeah, what? It's just still time. What a type one answer to a question, by the way. Hey, you have any of these problems not yet coming, we'll see. Don't worry, I'm looking for it. Okay, so vitiligo, a little uncommon, but not completely. And you were 38 when you have the kids? Yes, 48 they're 12 now ish, well, they'll be 12 in August. Cool. Happy birthday. Did you get, like, one of each or how'd they come out? No, so identical. But they're identical. I'm sorry, boys, yeah, yep. So in theory, they should be exactly the same, but they have some differences. Have you seen that Tiktok trend now where it's like, about twins and they're not identical, and somebody's like, what a waste of time? No, I haven't gonna get all that trouble to make twins. They're not identical. What leads you to the doctor, did you was, I mean, I assume, if you had gestational maybe you knew what was happening to you.
Speaker 1 4:46
So I actually didn't. I did that whatever test, right? When you drink the whatever is it? You're drinking glucose, whatever. When you're pregnant, whatever they make you
Scott Benner 4:56
do. It's the, yeah, what's it called? The glucose, not a challenge. It's a. Tolerance, glucose tolerance test, yeah,
Speaker 1 5:01
so I passed out taking that. And, um, they were like, Oh, you probably lost the baby. And I was like, what? Like, why would you say that? And if that's a possibility, like, Why did I take this test? Like, that was my first of, like, distrust, or just there, I guess every,
Scott Benner 5:20
every every conversation I have, I'm drawn to be like, where do you live? So I don't move there. Like, that's what
Speaker 1 5:27
I It gets better. And it's, I can tell you generically, it's three different states, so it's not even, like, state specific or city specific, okay, which is kind of sad. But anyway, so I luckily did not lose my baby, but then quickly found out there were two of them, and they wanted me to take I don't even remember what it was. It was a pill, so I'm gonna assume it was Metformin. And I didn't want to take anything while I was pregnant. And they kept pushing it, and at my next appointment, they made me watch a video of someone giving birth to how do I want to phrase it? I wasn't well controlled. So the baby was rather large, and then I was like, Okay, I'll take it like they scared me into it. And I'm like, Okay, wait,
Scott Benner 6:14
they scared you straight with a video of someone giving a vaginal birth to an oversized baby and saying you have to share your gestational diabetes. Yes,
Unknown Speaker 6:22
they were like, this is going to be you. Can I
Scott Benner 6:24
ask a question? Were you considering not listening to them? Like, were they like, this lady's gonna be a problem. We gotta get out the big gloves right
Speaker 1 6:32
now. I mean, I felt bullied. I hate to use that phrase, but I did. I felt like, All right, do I want to keep arguing this? Should I just trust so maybe I shouldn't say bully. But I was like, Maybe I should learn to trust these people. Is maybe more on my thought
Scott Benner 6:48
process at the time, make sure I understand you didn't want to take the glucose tolerance test right away.
Speaker 1 6:53
The tolerance test, I was okay with. I didn't want to take the Metformin.
Scott Benner 6:57
Metformin. Okay? Why? Tell me why. Like, your initial reaction, I
Speaker 1 7:02
just so I've always been more of, like, natural thinking of I have an issue. I can figure it out, whether it be exercising more or drinking more water or something like a medication would be the last resort for me personally. And there's no like judgment, like, who, however people want to live, that's how you want to live, right? But for me, any sort of medication would be my last thought. Okay?
Scott Benner 7:27
I just wanted, like, I have a brother like that, by the way, where he's just like, I'll be all right. And I'm like, Okay. And like, and I get his point. You know what I mean? Again, I get yours too. I just wanted to understand. So, okay, so you weren't there, like, Hey, you're gonna need Metformin. And you were like, Listen, I'll do a jumping jack and drink some more water. And then they were like, look, what'll happen to your vagina if a 20 pound baby comes out of it. Is that about what it went is that about
Speaker 1 7:51
it? Yeah, and just that, you know, the baby would have all these issues. Like, there was a lot of scare tactics that they used. And then I think I did a little research, and this is so long ago, but I don't know if it was, like, a Class C drug, I can't remember, but it wasn't something that you wanted to just take without any thought while you were pregnant. And that was my other, like, hesitation, um, and I'm not saying it's right or wrong. That was just my thoughts at the time, but I ended up taking it. Yeah,
Scott Benner 8:19
I just, I didn't realize that there was, like, like, the driver's ed equivalent of a gestational diabetes video, yeah. And
Speaker 1 8:26
I felt like very set up because it was, I had no idea. And then I went in for my appointment, and they had, like, the video going, I'm like, what is happening? What
Scott Benner 8:33
do you think happened on their side? Do you think, like, this hippie doesn't want to take our medicine? Is that? What do you think? Is that, how you came off to them. Do you believe or do you not know?
Speaker 1 8:42
Probably. I mean, I think, as much as I dislike most physicians, based on my experience, I understand their thought process of, you know, a medication is always, is typically an appropriate path, right? That's their belief system, right? Like I I understand that. I get it. It's not going to be, you know, exercise or eat better, or whatever it's going to be. We have a medication that can help you with that, and that's their belief. And oftentimes that's probably the correct path, but not always right. I see what you're saying
Scott Benner 9:17
like, you feel like establishment wants to go right to medication, and you're worried that they're just making that leap without trying other things. But do you look back now in hindsight and think, thank God I did that? No, no, but it worked out, though, right. The kids came out like an average size and all. So I
Speaker 1 9:36
went into I had them at 28 weeks, so they were both only two pounds.
Scott Benner 9:41
They weren't gonna be oversized, one way or the other. You're like they could have been two and a half pounds. But do you feel like you dodged other issues because of that? Let me do that. You keep talking, and I'm gonna look for something. Okay, okay, go ahead.
Speaker 1 9:56
I don't think I did, because after I had them. Um, it was simply okay. You don't need to take the medication anymore. And, like, good luck with your babies. Like it wasn't. We should test your labs. You should follow up with this doctor, that doctor. It was just like it was over. Stop taking it. Have a nice life. And so I did, and I didn't think anything about it ever again. You know, I had two premature babies that was living my life, working full time. I wasn't like, Oh, I wonder if they should have suggested a follow up, right, which I don't know you would think is standard protocol. Many years later, I'm in the ICU for a week at 90 pounds, diagnosed type two with malnutrition. Well, how tall are you? I'm 555,
Scott Benner 10:42
what did you weigh before the diabetes got you? So
Speaker 1 10:46
my whole life I've been like, around 115 but like, like, lean muscle.
Scott Benner 10:51
Well, 551, 15. To lose 25 pounds is significant. And
Speaker 1 10:56
I looked forward, right? And when i I'm sure all of us do the same thing. We think back on certain circumstances and situations prior to being diagnosed, I probably looked like I was on drugs. Yeah, 100% is probably why I was dismissed so many times when I knew something was wrong.
Scott Benner 11:17
Oh, you went to the doctor and people turned you away at first. Well, towards
Speaker 1 11:21
the end, yes. So, I mean, I random things before then, like, I think most employers, they have, you know, the health fairs. And if you go get your blood work done, you get like, $100 in your HSA. Like I would do that every year, because I wanted the $100 and back to 2014 I was testing high. It was like 121, 25 it wasn't like 600 but it was higher than, higher than it should have been. And it was always the same response of, oh, you're fine, you're thin, you don't have anything to worry about. Like, it was always the same response. And I was like, Cool,
Scott Benner 11:56
great, Heather, listening to the nurse in the cafeteria of the place where she worked.
Speaker 1 11:59
Yeah, and I'm like, Cool. I'm not worried. Thank you. This
Scott Benner 12:03
girl who seems to have been out of college for at least a month says I'm okay, yep, I'm not gonna think about this again, but I will take my honey. Thank you very much. I
Speaker 1 12:14
know it's also disturbing to me now, but at the time,
Scott Benner 12:18
see you were pre, you had pre, some form of pre diabetes, Lada for almost 10 years. Yes, yeah, okay, I would assume so, right. It sounds like, Hey, can I read you a list real quick? Yeah, babies born to mothers with gestational diabetes who have high blood glucose levels during pregnancy. During the pregnancy, of course, you're risking excessive birth weight, pre term birth, respiratory distress syndrome, miscarriage or stillbirth after the birth, hypoglycemia, jaundice, respiratory problems, higher risk of obesity and type two diabetes, long term risks for the babies type two diabetes and metabolic syndrome, increased risk of metabolic syndrome, which includes a cluster of conditions such as high blood pressure, high blood sugar and abnormal cholesterol levels. I guess it's probably hard to like, like, you know, in a world where it's hard to make a human being believe if they smoke a cigarette they might get cancer 50 years from now that, like, I don't know, how do you tell somebody that when they're pregnant? You know what I mean, right? Because your glucose is a little high, it's not a thing. Probably even sounds scary to most people. But anyway, yeah, I think that
Speaker 1 13:21
all sounds terrifying, yeah, but all they used was they're gonna be huge and, yeah, it's not gonna be pleasant. That's
Scott Benner 13:30
all they said. Well, I'm sure that they were somewhere between your little girl, Heather, are you sure? Is that like they probably were, really? Because maybe, Listen, I'm not sticking up for people who are lazy at their job, or ham fisted or whatever. But I wonder how many times you have to go through this rigmarole with people before you're just like, oh, let's just skip to the part where we tell them the baby's gonna come flying out like a truck, right? You know? Like, see if we can't get them to take care of themselves. I don't know. It's a weird thing. I see both sides of it. If you take insulin or so final ureas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with GE voc hypo pen. My daughter carries GE voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that I trust low blood sugar. Emergencies can happen unexpectedly and they demand quick action. Luckily, jivo kypo pen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store jivo kypo pen and how to use it. They need to know how to use G vo kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gvoke, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you. Of a tumor in your pancreas called an insulin Oma. Visit, gevoic glucagon.com/risk. For safety information. 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 I let pump from beta bionics, the stuff you're looking for, they have it at us. Med, 88887211514, or go to us, med.com/juice box to get started now use my link to support the podcast. That's us, med.com/juice box, or call 888-721-1514,
Unknown Speaker 16:13
and I think about
Speaker 1 16:14
how I would have thought back then, and I don't know even if they did go through the list, to your point, but I would have been like, Oh, this is a really big deal. I still probably would have been of the mindset of whatever I need to do right outside of taking Metformin. I can do that like I definitely had this. I can fix whatever thing that I don't have anymore. So, yeah, I don't know if it would have mattered, to be honest. Now it does. But then I would have been like, Okay, thanks.
Scott Benner 16:40
You grew up in a house where people didn't go to the doctor.
Speaker 1 16:43
So no, my parents, neither of them, were very healthy, like my dad had his first heart attack at 35 and his last one at 62 my mom passed away from DKA in 2019 but she was diagnosed as a type two in her 40s, really, and yes, and I, of course, like, I go over this in my head all the time now, which we'll never know, but I'm like, Was she a type two? Because she was on insulin, so she was on Metformin, plus a short and a long, and it was always a mess, and it was always blamed on her diet. And I think I supported ignorantly that thought process, because at the time, I ignorantly thought type two was all diet related as well.
Scott Benner 17:35
You were just like, Mom, you're just eating wrong. This is yes, yeah, you have guilt about that.
Speaker 1 17:41
I do, especially now that I'm in that situation, it's a very lonely and isolating feeling. So I don't think me badgering her about like eating a Hershey kiss in the past was relevant, right?
Scott Benner 17:56
Do you think now, like, oh my god, if somebody would talk to me like that, I'd be mortified, probably,
Speaker 1 18:02
yeah, like, really, I think I was more of like, a, I don't want to say a tough love, because she was my mom, but I was just like, Mom, we can fix this. Like, start implementing exercise, start eliminating this and that and that. Like it was always you can do X, Y, Z, and I think she did do some of them. Obviously, it didn't matter
Scott Benner 18:22
how long did she How long did she live with it?
Speaker 1 18:25
Um, so she passed away when she was 73 and so she was in her 40s when she was diagnosed type two, okay, I just remember it was always, I would always see her shaky. She was definitely always very moody that would come out of nowhere, just lots of behaviors that, now that you know I know more about everything, I'm like, oh, that's what this all was. And she just needed, like, help and guidance and someone to actually care for her appropriately on the medical side. And I don't think she received that, because even when she went into DKA, she lived alone and I lived, like, two hours away. I was with her over the weekend, and we would text a lot, so like that, Monday, I texted her, she said she wasn't feeling good. Tuesday, I checked in, I didn't hear anything from her, which wasn't uncommon. But then Wednesday, when I didn't hear from her, I felt uncomfortable, and I'm like, something wrong? So I called her neighbor. I'm like, Hey, can you run over? And that's when they found her, and even when they took her to the emergency room, and she had been there plenty of times before, and so they knew she had type two or type one, whatever, they initially sent her for X ray, she wasn't conscious, by the way. They sent her for X rays, because when they found her. She was on the floor. So it's like, I don't understand, I don't understand the protocol of you have an unconscious diabetic person, and our first concern is, did she break a bone?
Scott Benner 19:53
There's this episode I have with a an emergency room. Nurse. It's a it's a cold wind. So she's anonymous. She's an emergency room nurse with type one diabetes who was witnessing another hospital employee a medical issue. They were having a seizure from their type one diabetes, and they kept trying to send him out for a head CT, and she's like, his blood sugar is low, and like she had to stand there and have an argument that she almost lost, like they almost just pushed the guy out the door to another place. I'm taken back to that conversation all the time, because I remember her saying, I'd be safe for having a seizure at your house, Scott, than in the hospital
Speaker 1 20:31
I work in. That's so scary, and that's something I'm terrified of as well. I think everybody is. But anyway, so they, you know, did their X rays, and just fine, but then she passed away, like a day later, and I think they said from, like, sepsis. But it was, it was, you know, your parents
Scott Benner 20:48
were both reasonably unwell through their life, like your dad had a heart attack when he was 35 Yeah.
Speaker 1 20:53
And, like, yeah. So I think that was always my main motivation for always trying to be healthy like I did not. So I'm saying this respectfully, yeah, because it sounds disrespectful, but I didn't want to end up like them. You know, I'm was always into different sports. I enjoyed healthy eating, so it wasn't like I had to train myself to get there. That was just additional motivation of this isn't going to be me, because I got all the bases covered. I'm interested, I'm knowledgeable. Like, I don't need health care. I don't need anything because I got it. And so here we are,
Scott Benner 21:33
well, here we are, like, I got it. Don't worry, I'll just get my diabetes later. Yes. So okay, so you're diagnosed type two initially, but about a month later, what happens to get through the end, oh, and they're like, you don't have type two diabetes, is that
Speaker 1 21:47
well, so I got to tell the hospital story, because it's Oh please, at least disturbing to me. The morning of I remember waking up and I threw up, and then I remember nothing from that point on, until, like, I have little pieces, but mostly not until a few days later. But so I guess, after I threw up, I texted my friend, and I just said, I need help. And so she came over, because she's like, What's wrong with her? And so she took me to the hospital, but she said I was walking around getting my kids ready for school, and that we dropped my kids off at school first, which have no recollection of any of it. But anyway, so we get to the hospital, she texts me in which I don't remember anything. I remember only twice that I had to go into the bathroom there to throw up, and it was like a public bathroom, so it was just like, it was gross, it was dirty. But we were there for six hours, so initially they took blood work when we got in there, and I was, I don't remember that either. She said I was unconscious. Like, the whole time we were there for six hours, she kept going up and saying to the staff, she's like, my friend is dying. Like, can someone please see her? And they were just like, she'll be seen soon. It was just like, that same old whatever. Yeah. So at one point she tries to get me out, and she had just had surgery on her knee, so it was like she was struggling with trying to get unconscious me out the door, when she was like, kind of wobbling. And the the gentleman that had taken my blood saw her taking me out, and he ran up to her and said, you can't take her home. She's dying. And she's like, No kidding. Are you going to see her? And he's like, I can't do anything about who gets seen. And so then she's like, well, then we're out of here. And so we went to a hospital, which literally was like three minutes away, thank God. And she said I was in, I was being taken up to an ICU, ICU room within 15 minutes. So like, Thank God she took me when she did. I just remember, because I lost all this weight, okay? And for like, months prior, I couldn't sleep because, like, my tailbone was sticking out. So I couldn't lay on my back. I couldn't lay on my side because, like, my hip bones were sticking out. I couldn't lay on my stomach because my pelvic bones, like, I was so uncomfortable for months, so they put this pad on my tailbone and, like, that's the last thing I remember. I was like, oh my god, I have some like, comfort. It was the greatest feeling ever. I'm like, I can lay down without pain. I was there for several days, I think six in the ICU, and I just remember them on, like, the maybe the day before I left, saying that it was type two. I was so sick. Like, I can't even describe, like, how sick I was, like, I was just non functional. It took me, like, almost two months before I could even physically lift my purse without, like, strain. Like, that's how weak and just I was nuts.
Scott Benner 24:31
Yeah, who was taking care of your kids during that time after I got home? Well, no, like, while your health is degrading, like, Do you even remember those times. So this is the, probably
Speaker 1 24:43
one of the scarier parts that I look back on. I feel like the first thing that went at least for me, was my brain, like just the thought process, the thought functions, because there's so much I don't remember and then so this will happen. I was finally diagnosed in March, right? That whole hospital episode, but in December, I started randomly falling asleep, but not realizing I had fallen asleep in the afternoons, and I would wake up to my kids saying, Mom, where are you? Because school was out and I picked them up, and that's what would wake me up, but I would have no recollection of any of that happening, and I remember not being able to, you know, when you get out of the shower and you put the towel on your head to dried off a little bit, I remember not being able to do that because my head hurt so much from that slight like touching pressure. Yeah,
Scott Benner 25:39
when my just my iron was very low. I couldn't lift my hands up to dry my hair. Like me, yeah, when my iron got really low,
Speaker 1 25:49
yeah? I mean, it's crazy, yeah, but so it does scare me that, like there's so many things I don't remember. But when I was in the hospital, the friend that took me to the hospital took my kids. My kids are friends with her son, so like, for them, they were super excited. And I just left it at that place, right? Yeah. Like, just be excited. It's
Scott Benner 26:09
cool, going to camp. Mommy's gonna go die goodbye. But
Speaker 1 26:13
so it was like, you know, type two. Even at that point, I just felt disappointment. I was thinking to myself, I don't have type two. These people are nuts. I'm so sick and I can't believe I'm now gonna go home and I'm back to square one of I have no idea what's wrong with me. Like I not one spot type two.
Scott Benner 26:32
So you thought there was something significantly wrong with you, and they were telling you something that it
Speaker 1 26:38
wasn't correct. Okay, I didn't believe them for one second based on how you felt. Yes, okay. And I literally, and I'll, like, never use this phrase outside of this again. Like I literally felt like I was dying for months, like every part of my body and my brain was saying you were dying. And I remember my dog like, just constantly pawing at me to the point that I was like, What is wrong with our dog? It's like, he knew,
Scott Benner 27:05
yeah. He's like, I'm gonna eat this lady when she dies. I know. My God, isn't that something your dog's trying to help you? Yes? Yeah, you're so sick that a dog is like, something's wrong with this one. And yeah, and doctors don't know,
Speaker 1 27:20
it literally was like, constant, because you're
Scott Benner 27:24
skinny, by the way, because you're a thin person. Do you think that's the whole reason they're like, it's like, why would they not? Do you know what I mean? Like, why does the bullshit of, oh, you're thin, it's okay not make somebody go. I mean, if that's their mindset, then why don't they go, Oh, you're thin. This isn't type two. Like, you know what I mean? Like, if they're willing to make, like, a bullshit leap because of the size of your body for one reason, but not for the other, I
Speaker 1 27:47
agree. I think it's all laziness. I think it's complacent this, I really, and that's been my experience. It's just it's lazy. And I like when people are like, Oh, they're so busy. Well, what are they busy doing, because it's not patient care. They're generating income. They're busy generating income, but it's not patient care, because my story is far from unique. Yeah, you know, I've listened to tons of very similar stories on the podcast. It's just, it's lazy, and it's, I don't know why we all accept it, and I think it's we accept it, because what the heck else are we supposed to do? Well, yeah, like, what are we gonna do? Right?
Scott Benner 28:24
Because the other side of it is they're they're also just people. And you know what? I mean, like, they're in an imperfect system, and they're not perfect people, and everything else that goes along with being human is involved. But you would think that in a world that's so I mean, listen, look at what our I hate to talk like this, but like, look what our computers can accomplish, right? Like, we're shooting, I don't know, rockets to space stations and bringing them back again, and cars are driving themselves. And, you know, an algorithm can pretty much do anything it can. Can control your blood sugar through a thing that a guy in Russia made in an app. And I, you know, don't know the first thing about gestational diabetes, but by typing the sentence, what happens to a baby of a gestational mother if the mother has high blood glucose, I got the complete and utter breakdown of what happens in literally, a split second. You'd think we'd be able to figure out how to triage people more accurately, I
Speaker 1 29:22
know that's all I'm saying, but it gets better with that hospital, even though I appreciate that they did save my life because they did, right, of course, yeah, and I think we all go back and forth like ers are meant to keep you from dying, right? They're not technically meant to diagnose, right? It's just to stabilize you. So I do appreciate that they saved my life, however. So the day I was leaving is when I assume it was a diabetes educator came in, but I'm not really sure. And she gave me, you know, the pamphlets of, like, you know, a quarter of a bagels, 15 carbs, blah, blah, blah, like, things I was just like, this lady talking about, and why? Yeah. And then she whispered to me and said, You're not type two. You have type one. You need to see an endo. And she handed me a piece of paper where she wrote down like, five different endos and said I ranked them from who I recommend best to least good luck. And it was just kind of like, you know, be quiet. And I was again, I was still, like, this lady's nuts. Like, not type two, but I'm definitely not type one. And you also, you don't
Scott Benner 30:26
know the world that she understands. She's like, Listen, you were just misdiagnosed. I'm trying to save your life. Take this paper. And you're like, Okay, crazy person. Hey, yeah, I hear you. Yeah,
Speaker 1 30:38
yep. Thank God for her, right? But so, you know, all they make you do as an adult is, you know, stick the needle on your stomach. And as long as you can do that, then you're good to go. And, like, that's literally it. So there's no directions, advice, nothing right, which is, just as long as you can poke your stomach with the needle, you can leave now. And I remember specifically asking about like, because they told me I would have prescriptions for two insulins on how I was supposed to do that. And they were like, instructions will be with the prescription. So I'm like, Okay, so my friend takes me to pick them up. The long acting makes sense, 20 units once a day. But then for the short acting, it says take one unit as needed.
Speaker 2 31:25
Like, that's literally what it said. So it's like, it's so disturbing
Scott Benner 31:30
to me, when you look back at it, you're like, what does that mean? Because there's
Speaker 1 31:34
no scenario where that's an appropriately written prescription, right? Do you agree? I'm just like, yeah,
Scott Benner 31:41
no. I mean, the person were to say to you, look, we put a generic placeholder in the script because we don't know what to say yet, because we don't have your insulin to carb ratio. We're not sure if you're honeymooning. We don't know any of that stuff like, and these are things you're not gonna understand yet, but that's why you're gonna go right to an endocrinologist and get it all worked out. Like, you know, but no, as needed. So that's then up to you to go, Okay, well, here's a unit. Is that what's been is
Speaker 1 32:04
I called the hospital when I got home, because I'm like, I don't know what this means. Like, when would I know when I need it? And of course, they're like, Well, you're not a patient here anymore. You need to talk to your PCP. And I think this was like a Friday afternoon, of course. So then I don't even think I called them until Monday. And then, of course, they were like, well, we didn't prescribe you that. We can't tell you how you should take
Scott Benner 32:27
it. Just passing the buck everywhere, right? It
Speaker 1 32:30
was, yeah, and I'm still so sick at this point, and I'm just like, all right, I don't even believe these people anyway, I'll just take this one unit when I eat. This is so funny when I think back on some of this now, because, like, when I got home, like our neighborhood did, like a meal train, just to help so I didn't have to cook dinner for the kids. It was either the first or second day I was home, someone had just ordered pizza for the for us, and so I was still very much starving, right? Like I could eat all day long, every day, like 5000 calories. I still need more food. And I remember eating like six pieces of pizza, and I took one unit of insulin for it. That's about right
Scott Benner 33:12
as needed. Are you wearing a CGM? No, right?
Speaker 1 33:17
No, they didn't send me home with that. I there was a, oh, this is funny too. So it was, you know, with the glucometer, they didn't see anything. Like, I have to preface by saying, like, they provided no information and I was sick. I would keep saying I was really, really sick, yeah. So I would check, like, I think it said check four times a day. I don't remember exactly what it said of how many times to check, but I would check and it would just say, hi, and I remember calling the pharmacy and saying, My glucometer is wrong because it's not reading numbers, it's just reading words and and they literally just said, bring it back. We'll replace it. And I'm like, Okay, thank you. So my friend goes and picks up a new one, brings back the next one. Next one. The next time I check it, it's the same thing. I'm like, can't believe this one's broken too. Like it's not reading a number, and literally, I replaced three until I finally, like, looked at, like the directions, or Googled. I don't remember what I did, because my brain wasn't thinking, Heather,
Scott Benner 34:15
I hope this makes you feel better that the the in the middle of the night, the night we realized we thought Arden had diabetes, and I went out to I went down to a 24 hour pharmacy, and I got a glucose meter. We brought it back, and didn't really know how to do it, and we opened it up, put it together, and checked Arden's blood sugar, and when it said hi, I said out loud, oh, it's so nice. It says hello to you before it gives you the number. My wife's like, hold on, dummy, when you see that. So she she looks in the book, she goes, I think that means her blood sugar is over 500 and I was like, Oh, okay. And then we just packed up and we went to the hospital, like in the middle of the night. But I literally said those words, so I don't want you to feel bad because I wasn't sick. So. I was just dumb. Didn't notice,
Speaker 1 35:02
you don't know, right? Yeah?
Scott Benner 35:05
But I thought like, Well, what a lovely medical device. It's like, Hello. How are you? I'm gonna give your number in a second. Hold on. They don't do that. I love that. You return. How many? Three of them?
Speaker 1 35:15
Yeah. Nobody questioned me. And I literally kept saying, it's just saying words. Nobody was like, Well, what word is it saying? Like, no, yeah. It's like, Here you go. Your
Scott Benner 35:26
story just outlines all the gaps in how things are set up. Like, how many different times and how many different ways somebody can be dropped? And then, I mean, I love that. You call back the hospital and you're like, hey, I have a question. Like, you're not a patient here anymore, but you're like, you told me this, and it's like, that part's over. Now go talk to somebody else. Well, who, you know what I mean, like, and what is as needed. And you know, like, insulin, by the way, is really dangerous. So like, what if you decided one unit as needed meant every 15 minutes, right? Like, you don't, you wouldn't have known, although, in the case of six slices of pizza, that might have been appropriate, but, but Jesus. Yeah, not crazy. It's just crazy. How does it get to the point where you are now, like, what ends up happening that you figure things out?
Speaker 1 36:14
I mean, definitely the podcast, like, how do you find that? So I can't remember. I remember googling because, again, I wasn't feeling physically any better because I was taking one unit as needed, right? Like, wait a minute, how
Scott Benner 36:30
long did you do that? For? Like, a month, by the way, this is not funny, but it is kind of hilarious. So and you have, you have the right attitude to talk about it this way. So for a month, you're just like, how about now unit?
Speaker 1 36:42
I mean, I would eat, and I was still eating, like, and I know everybody manages differently, but I was still eating all day long, like I was starving still, because I was still, wasn't doing anything to feel better, because I didn't know what to do. But yeah, it was like a month, and I just I felt terrible, and I think I started Googling, just for, like, diabetes type one groups on Facebook in my area that I lived. And then I think that one came up on a thread of another group, the Juicebox one. So I'm like, Oh, I'll check that out. The
Scott Benner 37:16
randomness it takes. It was very random, yeah, to help yourself, is, is? I find that very frustrating. But then
Speaker 1 37:22
I didn't start listening to the podcast right away. I started just reading posts, and I'm like, oh, like, Pre Bolus and, like correction factors, and, you know, I'm like, What is all of this? And of course, I was terrified, and I actually still am. I'm, like, a very insecure type one still?
Scott Benner 37:40
Well, you're very new. I mean, I don't see a reason why you should feel completely confident. Like it's a year and a half that makes me feel better. Yeah, no, hell, I would. I was still crying in two years. Don't you worry. I didn't even have diabetes. This is my kid. I also didn't have a podcast to listen to, but that's neither here nor there. I was like, literally still crying in the shower two years into it, yeah. So
Speaker 1 38:04
the end of that, I see i i have a lot of negative things to say about them, but when I did get in there, at least I got a CGM, and they gave me the generic, you know, correction factor 50 and carb ratio of 15. So that at least gave me a starting point which I didn't have, right? Okay, so I'm grateful for that. I do know, at my six month appointment, after listening to a lot of episodes, I asked if they would help me, you know, down my ratios. And they had told me that at that point, this was my six month appointment, that I had been diabetic long enough and then I could just figure it out.
Scott Benner 38:42
Ah, you can make those adjustments. Heather, as needed. It drives
Speaker 1 38:47
me nuts because, like, I have a high deductible, and the visits are like, 350 holy crime. And then they charge, they have an extra charge for downloading my data
Scott Benner 38:58
of $50 I love that,
Unknown Speaker 39:02
which they've only ever gone over with me once
Scott Benner 39:04
we're gonna change your tires. Do you want these lug nuts back on? Because that's gonna be an extra charge, right? How could you charge someone to download their data? It's $50 I want just real quickly. Heather, this just isn't for you. Obviously. This is for other people listening. You're all scumbags. I just want to say, I mean, like anyone who's doing that, like, just be fcking ashamed to yourselves, like you're taking $350 off this lady to tell her, Hey, you could do it yourself. And, by the way, give me 50 more dollars to download your meter. Like, yep, and then not to help you with it. Correct pieces, 100% accurate, absolute pieces of anybody who would do that to
Speaker 1 39:41
you, I know, but like, that's where you get trapped, right? Because we need them for refills. So they provide me no service. They don't, yeah, other than they give me a prescription that they are so conservative with, too that I always have to ask. I remember, like, I'm on a pump now, but when I was still MDI, they didn't even write. It enough that I could prime my pen as many times as I used it a day. And I remember asking them to increase it, and they gave me a really hard time about it, making me almost feel like, like I'm a junkie or something like, like, what else would I be doing with the insulin? Like, I don't understand, like I was
Scott Benner 40:14
squirting it around the room, like fireworks. Like, you know, it's funny. You said junkie because I thought this like an 80s drug movie where the drug dealer makes fun of the guy buying the drugs, like, you, mean, I got to stand here and take this clowning on me before I can get my heroin, like, like, and they're like, Here, give us $50 Thank you. All right, here's your insulin. Yeah, I listen. I don't know, man. Like, the whole world's upside down. Like see I every time I have these conversations, I'm I'm inclined to say I see both sides. But then at some point, I think, no, I don't see their side as much. I know it's just people, and that a person who becomes a nurse is no different or better than a person who becomes a school teacher or the guy that comes and gets your, I don't know, does your does your dry cleaning like, you know, like everyone's people. You'll get good ones, and you'll get bad ones. And you'll get people who are very inclined to help people and to do a great job no matter what. And then you'll get people who are just like, I got this job. I wonder how long I cannot do it before someone fires me. Like those. Those people exist too, you know, in every walk of life, just like they don't care, they're not really trying to add to the greater good of anything. And those people are sometimes doctors too. I, you know, and then you get enough people together, and it gets into a system, it's like, hey, it turns out I can, you know, I don't have to work that hard, and I make a good living. And, you know, Heather's alive, she figured it out, you know? So we all win. We do. I have Porsche and Heather's alive, right? Jesus Christ, I don't know. I just think, like, I mean, there's a minimum, just do your job, right? Like, like, I don't
Speaker 1 41:59
expect them to care about me like, I don't. I think that's romanticizing a business. Yeah, of course, I expect them to do their job. That's it. You don't have to like me. You don't have to look me in the eye, which they usually don't. They don't even usually look at me. They just update things on their laptop, and then, like, that's it. And then I'll go into that my chart, and I'll read, you know, just like, five pages of notes of like, they checked my feet, and they did this, and they did that, which none of that even happened. And I'm
Scott Benner 42:27
like, What is this? No one looked at your feet, but they wrote it down. It's written
Speaker 1 42:31
on every one of my visit notes. They've never once looked at my feet, never once,
Scott Benner 42:37
I swear, I don't have anything bad to say about the Children's Hospital that Arden went to, I really don't the visits where we'd go in there, where they'd, like, let me check your sites, and they would just kind of palpate a little bit to see if there was, like, you know, you know, any spaces maybe, like, Oh, don't, don't inject here anymore. Don't put your pump here or something like that. They just pump it. Push on her belly. But how's your belly feel? Does that hurt? No. Okay, well, then there we go. And like, you know, like, so you pushed on her belly and you touched where her You said, Oh, you're doing a good job rotating. That's good. You're doing great. Everything's great. How are you? How are you? And Orton's like, I mean, I'm like, I'm eight, you know what? I mean, like, I play softball and I go to school and, I mean, I'm not dead, so I guess I'm good, you know, like, like, this is it, huh? This is the visit. I had to fight with them to give her thyroid medication. We don't medicate that number. I said, Well, you do with my kid, like, but I had to do that, you know, I got him up to, like, I don't think this is enough. You need to, like, look at t3 for her. Maybe Fight, fight. You know, they didn't. She grows the thyroid medications, not enough now, Arden starts having like issues where they're like, looking at her heart. This goes back a number of years. Not one person ever said, hey, you know, we put her, she had these thyroid symptoms. We put her on this thyroid medication. She gained 30 pounds, and we never moved up her dose. But these could be thyroid symptoms. Instead, they've got us scared out of our minds. You know, seeing a cardiologist, it took my wife and I to go. Do you think it's possible just just needs some more Synthroid because she gained weight, and then we couldn't get them to agree to that. So by the way, Heather, not for nothing. I started like knocking pills into little pieces and giving her extra I made her symptoms go away. And then I went back to the doctor and I said, Well, here's the thing I did, and now you helped me figure out how we should actually be doing it. Because I gave her extra, this Synthroid, and all this went away. There's no moment where they go, Hey, I'm really sorry for making you drive across the state to see a cardiologist and scare the daddy that your kid had a heart issue, and I didn't listen to you when you mentioned the thing about this Synthroid, but now that you figured out that it works, I'd be happy to adjust the dose and pretend like none of this ever happened, right?
Speaker 1 44:51
Yeah, okay, yeah. I mean, it's just, it's so much pressure because none of us are physicians, right? Like, and you. I personally don't have the capacity to figure out a lot of this, but we're all kind of forced to,
Scott Benner 45:05
oh, to the point where I don't want to say where I was, because I kind of give something away for another person, and which I don't think is right. I was with a healthcare professional for something recently. It was more personal, and they have no idea what I do for a living, which is to say they don't know I make a podcast, and they don't know anything about me. And we were talking and like I was a meal thing and going on and on little bit, there's a number of people there. And eventually this doctor turns to me and he goes, Hey, I'm so sorry. I don't know what you do. You're a doctor, right? And I was like, No. And he goes, you're not in the medical field. You're a nurse. You're and I'm like, and he's just like, looking at me like, blank. And I was like, I make a podcast. And he starts laughing. He goes, I thought you were a doctor. And I'm like, I'm passing as a doctor in this conversation. Be very clear. Heather, that says nothing good about me. That says something very scary about doc, almost didn't graduate from high school. Heather, I want to be very, very, very clear. There was like two months at the end where I was like, oh my god, I'm not going to graduate that I did not go to college. And I'm sitting with a group of professionals. One of them is a is a learned physician who thinks I'm a doctor, there's your problem. Yeah? Fix that.
Speaker 1 46:32
I know. Yeah, Jesus. But I mean, I think we'd all take advice from the podcast members right before, at least I would I have I'm better because of that community. It's listening to the different episodes, it's looking at different posts, and a lot of them are geared towards kids, but I still read them, and I'm like, Oh, should I try that? Oh, I'm gonna do this. And, like, sometimes it works out. Sometimes it doesn't, yeah, but everything came from there. The only thing I got from the medical community was 15 and 50, right? Eat 45 carbs. Oh, 1515,
Scott Benner 47:09
eat 15 carbs. Wait 15 minutes if you're low. Oh, I got that too. Yeah. Oh, no. What? What are you saying?
Speaker 1 47:16
So, like, they just, it was the generic, like, My correction factor was 50 and my carb ratio was 15, and then from there it was, just figure it out from yourself. It's like 32 and seven. You know what's
Scott Benner 47:31
interesting, Jenny and I did these three episodes called the math behind where we had these like conversations about, you know about, like, what the starting math is to figure out somebody's carb ratio, for example. And it's this very basic thing that you know, doctors and practitioners do behind your back in the office, where they're, like, you look over and you think they're they're wizards, and then they come back and they say, let's start with one unit for this. It's like, it's this simple, like, it's just this simple mathematical formula. How much do you weigh?
Unknown Speaker 48:05
Right now, I weigh 124
Scott Benner 48:07
okay, what should the hourly basal rate be for 124 pound female with type one diabetes.
Speaker 1 48:20
I like that you went there because I have a little story with that. Okay,
Scott Benner 48:24
I don't know what I'm doing. It's all just off the top. Let's see, this is just chat GPT. It's not connected to anything. Let's see what it figures out. Highly individualized, even it's covering its ass. Oh, so here it is, total a common starting point is the estimate the total daily insulin requirements for adults. A rough estimate is point five to point seven units per kilogram of body weight per day. Typical basal insulin accounts for about 40 to 50% blah, blah. So this thing's gonna if you asked this thing enough questions and then filled in, like, oh, well, this is, you know, my total daily insulin and went on one, it would give you the answer that you needed. Like, it would divide the daily it's walking me through right now, how to figure this out. And so there are people running around all over the world whose settings are way off, and then they go to a doctor and say, like, how do I adjust this? And doctors like, I don't know. You've had diabetes for six months now, you figure it out. Like, I can ask the magic box, and it comes it explains the whole thing. Like my endo can't do it, I know. Just tell me, you want to get back to tick tock. Seriously. Just have the nerve to say to me, listen, that sounds like a lot of work, and it's almost lunchtime, so why don't you go figure it out? It just, I don't know. All right, what's your story? What did that just make you think? Not really
Speaker 1 49:41
a story, but my endo was always very focused on how much I weighed in the beginning. Because when I would ask to change this prescription, because I would run out, or be close to running out, you're taking too much insulin for your body. It was always because of your body weight. So there must be some sort of calculation somewhere that. Equates, right? That has some generic setting to how much you weigh. Yeah, for months that was that, no, you don't weigh enough to take that much insulin.
Scott Benner 50:10
Well, is it possible I have insulin resistance? Is it possible that I have PCOS? Is it possible that I'm eating, like, really poorly? Like, do you want to ask more questions or just say that and then pass me out of here again, nobody it's the rest of this. Heather, I used to say this more than I say it now it's what we don't say that's important. You know, mean, like, there's more. Like, you just said something great, what's the rest of it? Right? Like, that's where the answer is. Like, what's the rest of it? And no one knows. I don't want to, like, listen, there are people who know. I'm not going to say there aren't people who know. But like, for the most part, really think about this. How many people do you really trust? Oh, I know. How many people in the course of your life do you meet and go there's a person ride or die? End of the World, I'm going with that one. You don't meet that many people like that. So, so I've built these calculators that I have not had the nerve to put out into the public yet, and I don't know if I'm going to, but like, for example, it'll help you with your insulin sensitive figure out your insulin sensitivity. It can help you. It explains the whole thing to you. What's your total daily dose? Do you know what? How much insulin you use a day,
Speaker 1 51:21
yeah, it's like, it's roughly like 32 units. Like 32
Scott Benner 51:24
units. So is your in Do you know what your insulin sensitivity is set at? I have it at seven. You think one unit moves you 7.0 I'm sorry for, like, the correction factor, 32 sorry. So this thing thinks it's like 56 based on your total daily insulin. But I don't know if that's right or not, and that's why I'm not, like, moving these out into the world yet well,
Speaker 1 51:50
and I don't eat a lot, so I think that, oh, like my car, 5050,
Scott Benner 51:55
yeah. Okay, so then there's an example where it just wouldn't work for you, and that's why I don't think it's okay to put these out there. But like, people could tell me your total daily again, was it 32 Yeah, it's roughly 32 and your one unit moves you how much for insulin to carb ratio. My car ratio is seven, seven. And you find these numbers to be very accurate for you. I do
Speaker 1 52:18
good. I actually think the correction factor could be a little lower, to be honest,
Scott Benner 52:24
lower, like, one covers nine, or one covers five,
Speaker 1 52:30
more aggressive, yeah, but yeah, more aggressive. I think there's no reason to feel this way, but I think a lot of people do, like, if I would go lower, it's like some mental thing. Like, I have the reason I don't eat a lot is because I have this mental thing in my head about, like, I never want to take more than five units at a time. Like, if I take more than five units, it's catastrophic. Like, it's
Scott Benner 52:52
why? Why do you feel that way?
Speaker 1 52:54
I think, like a lot of people, but they handle it better. Like, I'm scared of, like, something wacky happening, right? Which I realized, like, if going low, and I realized, if I'm going low, I have the tools and the knowledge to keep myself safe, and everything will be fine. But then you'll read those posts of like, there was no reason I dropped a 32 out of nowhere, and I'm like, Oh my God. Like I have to prepare. And in my head, it's all make believe, like none of this is based on reality at all. In my head, I can manage something going wacky if it's only like five units or four units, but if we go beyond that, then it would just be completely unmanageable. Okay?
Scott Benner 53:35
I mean, I don't, I don't, not understand your fear. That's you know. So what do you do? Eat lower carb for that reason?
Speaker 1 53:42
I do. Yeah, yeah. I could go a lot of places with food.
Scott Benner 53:47
Like, were you lower carb prior to diabetes? No, no, yeah. So you have, you have a fear of getting low, and so you're trying to work with, like, I'll use less insulin, that'll give me less chance of getting low. That's part of
Speaker 1 54:01
it. That's a big part of it. What's the rest of it? I mean, the other part of it is I, like, I hate food now, like, if I could never eat again, I would happily not do so
Scott Benner 54:11
tell me more about that. Tell me more about that,
Speaker 1 54:15
because it's requiring me right? Even if my settings are completely correct, it's still requiring me to do something right that hopefully I get it right, but if I don't, then I'm gonna have to eat a stupid gummy or I'm gonna have to like you. It requires management, right? You feel
Scott Benner 54:33
judged by the outcome. Are you insulted that you need to do it?
Speaker 1 54:38
I feel annoyed by it. I feel overwhelmed by it is probably a better word. Like, I would just like to eat lunch and just eat lunch. Like, I'm just gonna eat whatever it is. I'm gonna go on about my day instead of, oh, did I get this wrong? Oh, I must have been stressed out right before I ate, because now it's going up and like, how long should I. Eight before I do like all of that. I don't want to think about that, no, and I obsess about it all day long,
Scott Benner 55:06
or just think about it, yeah, so
Speaker 1 55:09
it's like, I'm anxious about lows, but I'm also anxious about, you know, I want to be no higher than 120 ever, like, I want to just kind of be in the 80 to 100 all the time, because I feel like there's been, and I don't know any of this, this is all fabricated in my head, but I feel like there's no way I don't have an incredible amount of damage to my body from, like, 10 plus years of being undiagnosed, like, possible, I bet. Yeah, well,
Scott Benner 55:39
I mean, listen, if you're if your blood sugars are 114 for 10 years, it's not optimal. But I don't think you're in trouble.
Unknown Speaker 55:47
No. But who knows what it
Scott Benner 55:48
was, right? Yeah, well, yeah.
Speaker 1 55:51
And I know I have to, like, let it go. And I do believe, like, your body wants to heal.
Scott Benner 55:56
Yeah, it was like, I was gonna say, Where's your hippie stuff? Where'd that guy? It's
Unknown Speaker 56:00
there, it's still there.
Unknown Speaker 56:03
But I do believe that, like, our bodies want to be well,
Scott Benner 56:06
I know what you're saying, but saying it that way is, like, hilarious, is it? Yeah, I don't know. It just sounds like, it sounds like we've been smoking weed all afternoon, and we're talking about, and we're talking about Berberine,
Speaker 1 56:18
this is what I should do, and then maybe I could relax, oh, like,
Scott Benner 56:24
feels like we're in Colorado or on a campfire, and you're like, Yo man, just take more vitamin B. You know about methylation, like, but I totally understand what you mean. Like, I mean, and your body does try to heal itself, like, right? It is trying to, you know, you remake cells, and things can get better. Of course, you know, sometimes those duplicate incorrectly, but you know, for the most part, you know, we get cut, we heal, etc. Listen, it's important to note that I don't know what I'm talking about, but I'd be surprised if you had long term problems from that first couple of years of that, that slow onset, like, I mean, I'd bet, I'd bet for you being okay, if I had to bet some money, that could also be completely wrong, but you should just take some bourbon and see what that does. Or have you tried milk thistle? I'm just kidding. You probably shouldn't. But no, listen, not that there's not some great stuff going on, like with supplements, and there's some I take, some supplements that I'm sure people would laugh at me for. I it's not, it's certainly not a thing I would worry about. Yeah.
Speaker 1 57:33
I mean, I got a lot I got to stop worrying about because I know it's not helpful. Do
Scott Benner 57:37
you hard? Do you want a slice of pizza? Or are you happy eating the way you're eating?
Speaker 1 57:42
I don't want a slice of pizza because I don't want to deal with it. No, I
Scott Benner 57:46
didn't ask if you want to deal with it. I asked you if you wanted a slice of pizza, like, like, if it wasn't anything to deal with, would you want it? Yes. So you're restricting yourself to avoid the other thing, yes, and that's that making you upset.
Speaker 1 58:00
I'm upset that it exists in my life. Yes, okay, yeah.
Scott Benner 58:04
Is it? Is it changing your life in bad ways, the food or just the whole thing, the decision making tree that you're in? Like,
Speaker 1 58:12
I am not as as strong, I think, as a lot of people on this podcast, because I I'm very unhappy, and I can be dark a lot of times about all of this. Like, I'm amazed when I see people that I know how much time and effort and everything that they put into managing it, and they still have a really good attitude. Like, it amazes me because I am angry, I'm bitter, I feel like I have this very diseased body that I can't fix. Yeah, I all of it, all of it awful. I hear
Scott Benner 58:48
what you're saying. Have you thought about therapy to try to work through it?
Speaker 1 58:51
So I went to one hesitantly last year, and, um, it was just, it was so unhelpful and like, she didn't even know what to say.
Scott Benner 59:02
You're like, I'm bitter, and I feel like I'm in a broken body. And she's like, Yeah, no kidding,
Speaker 1 59:08
yeah. I mean, I think it was because, like, I could tell her I'm like, but I'm also grateful for and I could name 100 things, and that's the truth. Like, I'm grateful for all these things, and I also, like, despise everything about my life right now, like, and it's an equal, and I think that's where they get stuck. They're like, Oh,
Scott Benner 59:26
would it be helpful like to just be able to voice it with somebody else who would come along and say, Hey, I feel better too. I think
Speaker 1 59:34
so. I mean, I don't. There's not like, I think there's something to be said about, like, camaraderie, right? Yeah, even though it's like, well, with type one, but there isn't the supports out there for adults. I think just because everybody's doing their own thing, generally mean, like, if there was a freaking adult camp, I'd be like, Sign me up. There
Scott Benner 59:51
is an adult go, yeah, there's an adult camp. Yeah. It's called connected in motion. It's a Canadian thing, but they come into to. Of the US in a couple of places. Oh, you don't have to look into that. Connected in motion, connected in motion. Yeah, I, by the way, said that out loud, even though someone was on here once, and said, Oh my god, I'd love for you to speak at a connected emotion thing. I'm gonna go talk to people, and then no one got back to me. And I'm still saying connected in motion, connected in motion. So you're welcome, even though, apparently you don't want me there. Meanwhile, I don't know if the guy ever actually asked or not, but still funny to say. What I'm thinking is, if there's a soft spot in community for type one adults, I think it's this. I think that when you get a bunch of people together and they're they're both children or parents of and adults with, and you put them all in the same place, they clearly have significantly different perspectives, you know, based on their age and their experiences, but even based on when they're diagnosed. And even though I think an adult can take a lot from a conversation with a caregiver, and I think a caregiver could take a lot from a conversation with an adult. I think what ends up happening sometimes is that parents can get very, I don't know what the word is like, defensive, or they don't want to talk about bad things happening, because right now, they're in the part where they're like, if I figured this out, nothing bad is going to happen. And they don't want to hear from somebody who's like, I feel bitter because they don't want to think their kid's going to feel better. Do you know what I mean? Oh,
Speaker 1 1:01:27
yeah, 100% and I've actually thought a little bit about that with, like, my kids, and I can confidently say that if, if it was my kids, I'd be like, we got this. Like, you don't have anything to worry about. I will always have your back. We will get through this, like, and I feel confident saying that. I don't know why it gets twisted when it's yourself. I
Scott Benner 1:01:48
don't, yeah, first of all, I want to say I don't feel. I understand how parents feel. And if you're in a group with my group's huge. It's 51,000 active people, you know, and so it, I get it. If you're, like, talking about, like, how do we get this right? And blah, blah, blah. And then like, 135 year old, like, Wiz in person comes in, and they're like, we're all gonna die. Like, you're just, like, putting on digital black eyeliner. And they're just like, Listen, man, give up. Like, like, like, you're like, you're like, I don't want to hear this, right? And that is just that. That is an end of one, you know, situation from one person's experience. But also, there's other people that feel like that, and it would be nice that they could all get together and go, I feel bitter and I don't want to feel this way, because you don't want to feel that way, correct, right? I don't, yeah, so, I mean, it's tough, because a support group would be really valuable. You know, I don't know if I'm I don't know if I'm supposed to say this out loud or not. What am I gonna do? The group experts in my Facebook group mostly have type one diabetes, where they're, you know, where they their kid does, right? And these are just lovely people who are donating their time to answering questions in the Facebook group. And mostly what they do is they're like, hey, check out this episode. Or you should try bold beginnings. Or have you tried the Pro Tip series? How about these variables? Like, it's a very nice thing they do in their free time, but they have a chat where they can talk privately so they can say, like, Hey, I just reported a post or, you know, can somebody get a message? I'm not in that chat, by the way, very purposely. I don't I'm not involved in it on purpose, so that they can feel free to talk and, you know, have camaraderie with each other. And I hear back through people that that is maybe the best type one diabetes support group in the world, is that those 15 people in that chat. Oh, interesting. I've really toyed with learning more about WhatsApp and starting maybe a WhatsApp group for people with diabetes, and letting there be a an adult, what's WhatsApp chat and a like, maybe let it be more specific, like the but I gotta learn. I'm literally in the middle of learning about it right now, because, like, would that be nice if you could go on the Facebook group and go, Oh my God, there's a whatsapp chat for adult women who were diagnosed later. Or, like, you know, like, very specific, like, genres of people that you could jump into. Would you find that valuable? I would, you would. Okay, all right, what have we not talked about here? Heather, that we
Speaker 1 1:04:26
should have? Well, my kids, we could throw, you want to throw that in? I
Scott Benner 1:04:29
mean, they're identical, they're already special, but sure, let's talk about it. What is there been like you're not married? Is that correct? That's correct. Yeah, okay, and yeah, that been for a while or never? Yes, okay, always I was gonna say because I didn't dig into it, because it wasn't our path. But 38 twins in vitro.
Speaker 1 1:04:48
No, no. So it was a surprise. It was a really good, amazing, best thing in my life. Surprise
Scott Benner 1:04:58
that, by the way, your voice. Jump three octaves there, just in case the kids hear this. It was a lovely surprise. It didn't happen after a bar crawl, if that's what you're asking. It did not,
Speaker 1 1:05:12
no, but yeah, it's just been the three of us. So, I mean, I think that's some of my anxiety with all of this. You don't
Scott Benner 1:05:18
want to die and leave two young kids behind is that your thinking 100% and your parents both dropped out early, correct? And at the moment, you look like you could go before them. Yeah, I was gonna say that's occur to you, right? Absolutely.
Speaker 1 1:05:31
That's what terrifies me, is like they're gonna come home and find me dead anyway, whatever
Scott Benner 1:05:42
it's just like, that's probably not gonna happen, which, by the way, that's probably not gonna happen. You're stuck because you found your mom basically over the phone. You know what? I mean, like you, yeah, and I would like to point out she was 23 years older than you are, and not in great health. You're probably in better health with type one diabetes than your mom was without it. Probably,
Speaker 1 1:06:02
I actually don't disagree with that, but it's definitely, you know, she lived alone. I live alone. I'm like, anyway, so with them, I quickly did that trial, net after I was diagnosed, okay, and, you know, everything was negative, blah, blah, blah. And then months later, think they were asking me, like, does it hurt when you check your blood sugar? And I'm like, No, it doesn't hurt at all. Blah blah blah, trying to make it like normal for them, right? And so I'm like, here, let me, I'll do you. You can see it. That's cool. You get to your number blah blah blah, check both of them. They're both like, 120 something. I don't remember what it was, and this was first thing in the morning. And so like, of course, like all the other parents, right? Because I've seen all these posts too, and I can relate to them. Like, instantly panic. And like, Go, wash your hands, come back. Say, wash your hands, come back. Seem, I'm like, I'd be kidding me. So then I call the PCP, like, can you please order antibody tests again, C peptide? And she's like, No, there's no reason to and I'm like, Look, this is what I just did. Please do this. I have a deductible. I'm paying for it anyway. And she's like, I can't do that. And I'm like, Well, what can you do? And she's like, well, I can order an A, 1c and I was upset because I'm like, it's not going to be high, but fine, whatever. Fair enough. Yeah, so we get them, and they're both 5.8 and I'm like, Oh, my What
Scott Benner 1:07:22
the hell are you telling me your kids have diabetes? Not there yet. All right, geez, Heather, wait, oh, wait a hold this cat in the bag past the first hour. Hold on. Let me. Let me just tell Rob now. Go ahead. Charge me overtime. I know good editing overtime coming my way. Don't worry about it. Go ahead, Heather, what do you got? Go
Speaker 1 1:07:39
ahead. Then I was like, she's like, Oh, it's 5.8 they're fine, blah, blah, blah. I'm like, That's not fine. Like, what are we talking about? And my kids aren't overweight or and they don't eat, I don't want to sound ignorant. I'd like to take that comment back.
Scott Benner 1:07:53
Yeah, it wouldn't matter how much they wait or what they ate, if they're everyone sees higher or not. Like, it's just is, yeah, they're, they're, they're, yeah, their pancreas is either doing its job or it's not right.
Speaker 1 1:08:03
Yeah, clearly wasn't. But she's like, it's fine. And I'm like, no, like, can you please, like, order these other labs? And she's like, well, I don't know how to interpret them. I'm like, they're either positive or native. Like, there's, like, there's not much more you can do with them.
Scott Benner 1:08:17
Oh, wait, if you don't know how to interpret them, why am I paying you
Speaker 1 1:08:22
right? They either have the antibodies or they don't. But anyway, so then I just tried to get into an endo, which, of course, they were like, without a referral. Blah blah blah. So then I had a big PCP again. I'm like, please send whatever these endos want. So the endo was at USF, so, and I purposely chose that. I'm like, be in good hands here. Blah, blah, blah. So then they do run the antibody labs, and only one of them comes back with one positive, and it was the zinc one, the c8 thing, okay, and the other one comes back with none of them positive, but it's just sitting out in, you know, the my chart thing for two weeks, like I saw and got the notification. I was devastated, right? I was devastated. Two weeks I heard nothing from them, so then I finally send them a message. I'm like, Hey, I'm a little disappointed. This is devastating. I've heard from no one, like, what are the next steps? Because I was surprised too, because I hear a lot of really positive stories from the pediatric endos. And I'm like, Well, how did I choose the bad one again? But anyway, she's basically like, nothing you can do. Watch and wait. We'll send a script for a glucometer like that.
Scott Benner 1:09:30
Was it like, Would you like a free meter?
Speaker 1 1:09:34
And I'm like, This can't be watch and wait. So then I look on the list that is on the site of recommended end of
Scott Benner 1:09:43
Juicebox docs.com under undervalued resource. But yes, I know what you're talking about. Go
Speaker 1 1:09:49
ahead and so I go to one that's listed there. And it was just we did a telehealth to make it the appointment sooner. She spent the first 20. Minutes. So it was, we're on, you know, the zoom, both my kids are here to spend the first 20 minutes basically accusing me of, like, Munchausen, like, why would you ever check your kids blood sugar? Like, that's totally unacceptable. Why would you do that? And I'm trying to explain to her, like, how it happened. It was very innocent. They were curious. I want them to feel normal when they see me doing it. Yeah. And she wouldn't let it go. So then I'm like, Listen, this is what happened to me. Like everybody ignored me, then I almost died. Here I am. And she's like, Oh, all right. Like, this is one of the this was one of the recommended ones.
Scott Benner 1:10:33
Though I don't know what to tell you, everybody sucks, but they do.
Speaker 1 1:10:38
But then she continues to say that's not even the worst part. She says in front of my kids that I likely passed this to them in my placenta while I was pregnant. She said this to the three of us
Scott Benner 1:10:51
wait past what a higher a one thing, one type one. Oh, yes. Oh, that's not how that works. But okay,
Speaker 1 1:10:58
all right, so my my one son starts to cry, yeah, because he's
Scott Benner 1:11:02
like, why in the did I asked to have my blood sugar check? That was a guy that was like, Why did I say? Does that hurt? This was really the start of a bad decision making trick for me. Oh, my God, yes. You kid how old? He's like, 1110, they're
Speaker 1 1:11:16
11, so they're already getting to the point where, right, they're starting to be teens, and I'm not cool anymore, and, like, I suck for a variety of reasons. So now this lady's telling them, I've just given them, like, you know, this chronic condition. I'm just looking at her, and I'm like, never heard that before. And she's like, Oh yeah, absolutely,
Scott Benner 1:11:34
yeah, oh yeah, absolutely,
Unknown Speaker 1:11:37
I went pregnant too. She's pregnant.
Scott Benner 1:11:41
I don't know what that means, but Okay, good. Just that she should at least know, like, maybe
Speaker 1 1:11:46
she should, like, pregnant Endo, yeah. But anyway,
Scott Benner 1:11:50
a prendo. She's a prendo. Let's go with that. Okay.
Speaker 1 1:11:54
And then she just then started talking about, like, 45 carbs, or maybe it was 60, because I don't listen to any of this. I'm just like, all right. And then she's like, we need to refer you to weight management. And I was just like,
Scott Benner 1:12:08
for the kids, yes. Are they overweight? No,
Speaker 1 1:12:11
my kids are very skinny. My kids are 70 pounds when they're 11 years old. They've always been skinny, though, so it's not like a recent did she want them to put weight on? I know, because I didn't ask, because, like, at that point, right? Like I was done was like, whatever she said, like the respect was lost, or whatever she said, I didn't care, and didn't feel that it was valid in any way.
Scott Benner 1:12:34
Well, where are we now? Where are we now with the kids? So
Speaker 1 1:12:38
back to USF and the one actually has an appointment coming up in a couple of weeks, so I've been randomly checking. And the one that did not test positive for any of the antibodies, his are always below 100 like before meals after meals, like it seems fine. The other one, it's that it's not been anything over 140 but it's certainly a fasting 140s No? So the highest fasting has been like 130 something. I mean, close enough. I guess I don't
Scott Benner 1:13:11
think you should be able to wake up in the morning with a 130 blood sugar, though, I don't disagree with you. Yeah, that sounds junky to me. I think he's the one you're looking at like they're gonna need to be paying attention to,
Speaker 1 1:13:22
yeah, and he's the one that's going right. Um, so Well, first
Scott Benner 1:13:25
of all, let me say I'm sorry. Um, if that's what ends up happening, I'm I feel poorly. That's what's happening. But I'm glad you caught it and that you're ahead of it. It sucks that this is the that this is what happens when you try to go to doctors over and over, even the ones that people are like, Oh my God, this doctor is great. And then you go up there and they're like, are you why? Why are you checking their blood sugar? Like, how about this? How about hey, it seems like you really caught something here. Good thing. You check their blood sugar. Yeah. Again, everyone always sees something bad. It's backwards. How many times you look at someone and go, how is that the reaction you're having? Like, why not have why not this reaction over here? Like, oh, because what an opportunity to say, hey, it's great. You caught this early. If it's going to turn into something, we're going to know. We're going to be able to take care of it. Your mom already has type one, so you're already like, if that's what happens with you, then we're going to already know what to do. Boy, this is lucky. Like, just couch it differently. Like, right? You know what I mean, instead of looking at the kids and going see what this old bitch did to you, huh? I know,
Speaker 1 1:14:24
I know. Like, Jesus Christ, there was nothing beneficial for that comment, like, what am I supposed to do go back in time and not have them? If that was even true, which it's not true. But no, it's then my one son told me afterwards. He's like, I'm never gonna have kids because I don't want to do this to them. And I'm like, That's great. Yeah, that's great. Thanks, lady. And then my bill, let's not forget the bill. So
Scott Benner 1:14:46
what did it cost for her to make your kid upset and not want to have children, my God, and
Speaker 1 1:14:50
to accuse me? So for each visit, she charged for two even though we did it as a group, which is fine, she'd billed my insurance $2,100 Gosh, I'm not kidding you. And you know the contracted rate, I owe them 1100
Scott Benner 1:15:08
Listen, I want to say something I know. I tell people that my kids see, like, for endocrinology, we see a cash pay doctor, and then it's covered by my insurance. Like, I forget what it is, like 85 or 90% or something like that. In case, I've never said this out loud, the visits are 350 bucks. They're not $2,100 I know. And then they cover whatever they cover, and I end up paying like, 40 or $50 for my kids to see a doctor. Oh, wow, yeah. So my point is, is that $2,100 to get that hit? Level of care is ridiculous. I know every decent Doctor in the world is going to switch to cash pay. You're going to end up. We are going to end up. Everybody, like every decent Doctor, is going to start saying, I don't take insurance. You can send it in later. That's what dentists office do. By the way, a lot of doctors offices do that. They're like, look, I don't take your damn insurance. Go turn it into them later, and I'm sure you'll get reimbursed for most of it. But, like, I'm not getting involved in this game. And good doctors all over the place are doing this now. Now you got to be careful, because eventually doctors are going to do it too. But right now, the ones who can, um, pull their weight, and people know, and they know that they can run a basically, that they can run a business on word of mouth. That's what it really is. By the way, it's like they know they're good, and other people will tell other people about them, and they and to make a reasonable living, they don't have to work all day long. They can actually help you and sit my my kids doctor's appointments are 30 minutes long, if they're telehealth, and when we go in there, they're an hour. Oh, wow, yeah, you go, and you sit, you sit in a lovely chair next to a table with a lamp, and you have a conversation, like a human being, and you listen. They listen to everything. And when you leave there, everything's done. Scripts are taken care of, you know, if you need a blood work, it's all filled out. It's explained to you. This is what we're going to do. It's what we're looking for. You know, like all the stuff's done, you get a physical exam, a conversation, you know, and it's 350 bucks, and then when it's over, I only I pay, like, 50. It's amazing. It's not amazing. It's just you just, it's just reasonable, like, you just have to find reasonable people. That's the problem, is finding reasonable people.
Speaker 1 1:17:15
I mean, I would, I'm paying more than 350 and I don't get any of that, I'd happily pay 350 for someone to actually do their job. I
Scott Benner 1:17:24
texted with my doctor recently. I was like, I was like, Hey, I'm on my way to the pharmacy to pick this up. If they don't have it, what do you want me to do? And she's like, Oh, if they don't have it, text me and I'll just send another script for this instead. Wow, yeah, that's all. Find a reasonable person. It's not easy. I'm dumb beyond dumb luck that I found this person. But seriously, I don't know. It's just it's very upsetting to hear that somebody charged you $2,100 to make your kids sad, to say, to say that you were like, involved in Munch house since activities and to then not help with anything. All right, I don't know what to tell you. Good luck. You're all dead. It's not gonna know what you're gonna do. Like, exciting Are you made me upset? I'm gonna have lunch now, but
Speaker 1 1:18:15
so you shouldn't be, because truly, I know everybody says it, because it's true. Like, thank God for this group. Thank God for all the members and their insight and sharing their knowledge, their frustrations, like, all of it. Like, oh, we're all better because of this community. Like, just facts, I obviously,
Scott Benner 1:18:33
I mean, obviously I agree, and I appreciate you saying it. But it all it makes me feel like, is, I don't reach enough people. Like, every time, like I, I just said, this is somebody privately, but I'll say it here, even though it probably makes me sound crazy. Every time someone says something positive to me, I just think, well, there's I'm just I'm letting other people down. Like, if it works this, well, then why can't I reach more people with it and help more people. And so that's the part that just it kind of It breaks my heart. It keeps me up at night, kind of thing, like trying to figure out, like, how do you grow this? And I'll tell you the truth. Heather, the other day, I had a conversation with a person in the podcasting like space, like someone who works behind the scenes podcast hosting so they know, like, you know, they know what's what's what I was saying to this person, I don't know. Man, I'm like, I'm not growing this thing fast enough, like, it helps people, but it's not expanding quickly enough and to reach more people, because, you know, it How long can I do this for? I'm trying to help people now, that kind of thing. And we were on a on a like a Google meet up or something like that. And he said, Let me send you something. And I was like, okay, so he sends me this graphic, and I'm looking for it right now, see if I can find it. And he pulls this graphic up, and he says, Scott. He goes, buy down. Load, you're in the top 2% of all podcasts that exist in the world. Wow. And I was like, that's not possible. And he said, Now the 2% that are above you. He goes, actually, the 1% above you, you could reach, like, you could get into the top, like, 99 percentile. He's like, That's not undoable for you. He goes, that 1% above. He's like, you're not getting to that. He's like, no one's getting to that. That's dumb luck, smart list. Joe Rogan, kind of like space, you know what? I mean? Like 30 million people are listening to an episode that kind of stuff. He's like, you're not reaching that. He goes, No one reaches that. And I was like, okay, he goes, but you're right there. If you could grow 65 more percent, you'd be in the top 1% and he's like, Oh, wow. He goes, what is it you want? I was like, I want to reach more people with diabetes. And he goes, you're reaching as many people as this. This format allows. He's like, no one else is doing that. He's like, all those other shows are, like, comedy or famous people or something like that. And I was like, right? He goes, he's like, you, you've done it. You're, you're at the pinnacle right now. And he and he starts typing around. He goes, Look. He goes, I found a couple other podcasts where there were diabetes in the title. And I said, Okay. And he goes, there's a couple of them here. And he said, they pop up and down on these, like, low level on these sub category charts. They'll pop in over like the top 200 every once in a while, and they drop out again. And I was like, right? He goes, you get more downloads on an episode in the first two hours it's out than these people will get in the entire time their episode exists. And he's like, and those people are your closest competition. Oh, wow. And you would think that I'd leave that conversation and be like, I am doing it. And instead I left the conversation like, so then there's no way I can get better at this. Like, I can't reach more people and help more people. Like, listen to what Heather just said about the community and the group and the podcast and everything. Like, I can't, like, why can't I find more people? It's a very upsetting reality to learn that you've grown something as big as it almost possibly could be, and yet it's touching such a small percentage of people who live with diabetes that it feels like a failure when you judge it against how many people are walking around with diabetes? Do you know what I mean?
Unknown Speaker 1:22:10
Yeah, but I think that's a dark way to look at it.
Scott Benner 1:22:13
Oh, thanks, bitter.
Unknown Speaker 1:22:18
Welcome to the dark.
Scott Benner 1:22:19
No point in this conversation. Heather, did I just tell you to happy up? Did i?
Speaker 1 1:22:26
So, let me tell you this to make you feel better. So I've also heard about your podcast from Omada, which, you know who, what Omada is, right? The Diabetes platform through employers.
Scott Benner 1:22:40
No, I don't. I have no idea what that can I tell you a big secret about how I've grown it this big? Yeah, I don't pay attention to anything anyone else is doing. Okay, I don't care what anybody else is doing. I know this works. So I don't like, look out into the world for what's going on. I really don't like, like, when that guy mentioned these other two podcasts to me, he said the names of them, and I was like, I don't. I'm like, I've heard of that one, but I've never listened to it. And that other one, I don't know what you're talking about, so it's
Speaker 1 1:23:06
not a podcast. So it's, it's something that's offered through my employer, just, oh, and it's, I think it's more geared towards type two, but, and it's just, I mean, there's so many of these types of programs, right? They'll help you with coaching and nutrition and just different things to make your life better. It's diabetes related. But my coach that I have mentioned, hey, you should start listening. Juicebox. I'm like I already do. And then that blue circle health, which I know a couple people have posted on the page about that, which I thought was a little suspect, but I decided to check it out anyway. They also said you should check out Juicebox Podcast. I'm like I already do. So those are two professional organizations that are very well aware of the podcast, that are spreading the word and sharing that with with their patients clients, however you want
Scott Benner 1:23:57
to thank you to them very much. Also, I Googled Omada Health, and I see they're valued as a billion dollar company, and I'm over here worrying about the overtime on my podcast recording. But I guess, okay, you know, if I had a billion dollars, I know what I would do with it, and I know how I'd help more people with diabetes. But also I it's very possible I would just go to a beach. I tell you guys, you're all on your own, so just, let's be, let's be grateful. Maybe that's not happening. I appreciate that, and I know that. Like, look, I see people coming into the private Facebook group every day. How did you hear about this? My doctor told me, my nurse told me, a lady whispered it to me in the hallway at my endos office, like, you know, like I know, I know it's everywhere. It charts in 48 countries. I'm not unaware of any of that. It's just that if there's 1.8 billion or million people walking around with type one diabetes, and even though the group is huge at 50,000 people, that's not 1.8 million. And I'm not saying everybody would like me, or everybody would is even interested, but doesn't it feel like there should be a bigger percentage of than that? Yeah. Who I could make aware of it, at the very least, like, that's the part that, like it feels like you've done a lot and it's not enough. That that feeling, I live with that feeling a lot. I manage it. I used to not manage it. Well, I don't feel badly about it anymore, but it is how I think about the business side of what I'm doing and how I'm trying to drive things and make them grow. There's more people out there that need help. They don't. They don't know the podcast exists. Like, that's the thing I'm trying to get squared away somehow. I don't. I don't care if I'm in the top 1% or like, of podcasts. Like, that's really cool. I can't believe I'm just blowing past that. Actually, Heather gets real. It's an insane accomplishment, okay, but, but it's, it says a lot of things, you know, about the content, about the delivery. You know, it says good things about me, which I would probably do well to celebrate once in a while, maybe more than I do. I don't know, like, it just seems to me like this is a thing that I've seen help a lot of people, and whether it's going to help everyone, I don't think it could, but I wish they had the opportunity to find out if it was going to be valuable for them or not. And that seems like that's my responsibility, because who's else? Is it?
Speaker 1 1:26:11
You have to realize that there's going to be a subset of that population, of that 1.8 that is happy to manage at. I'm not gonna assign a number to it,
Scott Benner 1:26:22
whatever. Yeah, they're not looking to upgrade. They're good with micromanage,
Speaker 1 1:26:26
yeah, right. I mean, and like, that's okay. Not everybody's right. No, yeah, I don't have a problem
Scott Benner 1:26:33
with that. I don't want to sound crazy. That was my that's why I didn't want to bring us up. I don't want to sound crazy like, I don't think every 1.8 million people is out there in their mind, and they're mine, and I should get them as a listener. I get that there's a swath of them who are like, Hey, I'm good. Or maybe they actually just are good, like, they're like, I I managed a 681 say, I'm fine. And there's a group of people who are like, Oh, listen, I have a 781 say, and I ain't looking to make this any better, so blah, blah, or I don't have the bandwidth for this, or whatever. But at a 1.8 million Americans. Like, you'd think that 50,000 wouldn't be such a big number for a Facebook group, or that the amount of downloads that I do per episode, which I'm not going to share with you. Like, I look at that number, and I think that seems like a really small number compared to the possibilities of who would be interested in this but yet it's not, it's right in the top 2%
Unknown Speaker 1:27:24
Yeah, I think it's huge. It is, but it's
Scott Benner 1:27:27
still, listen, Heather, it is, but it's still disappointing to me. Okay, listen, yeah, but you just let me be upset. Jesus Christ. And it's not that. It's not enough. It feels like a missed opportunity. No, I hear you, yeah, I know I do. I'm trying to be funny and and say how I feel at the same time, because I don't want to, like, I don't want this to sound like, all like, boo hoo, because I'm doing great. Like, you know what I mean? Like, I know I'm doing well, and I know, and I know I'm doing well
Speaker 1 1:27:54
everyone, and that's like, admirable, yeah, not everyone is like, I would imagine the vast majority of us are type A, right, and we're micromanaging and we're making ourselves crazy because we can do X, Y, Z, right? I think we all probably have a similar personality type. Not everybody has that. Do you know what I mean? I know? Like, yeah, I do know what's crazy in this group of you know, I've been high for two seconds. What do I do now? And like, there'll be 100 people that chime in of this is what you can
Scott Benner 1:28:28
do. Yeah, get over here right now. Do this? Do that? Do this. Bing, bang, boom. It's all set. I learned that in episode 763 of the Juicebox Podcast. Like, like, I know, I see it all the time. It's, it's so wonderful. Like, it really, it just sometimes it melts my heart. Sometimes it makes it feel like it's going to like it's going to explode with like, Joy. Like, seriously, some days I have a bad day, and then someone comes over and is like, Look, I just wanted to share with you that this happened for me or for my kid or, you know, like, you have no idea. Like, I shudder to say this because I grew up in blogging, where somebody who was blogging to 50 people would do that thing where they're like, I get notes all the time because they're trying to make themselves seem bigger in the space. You know what I mean? Like, that happens a lot, whether you would know or not. I get them every five minutes. Like, like, they come in 73 different ways, through DMS and private messages and emails and some people who I can't believe but I gave them my my my phone number one time. And like, you know, like, and like, I probably get 20 or 25 notes a day, oh, wow, from people who are like, hey, oh, this thing, this thing, this guy made, like, look what it did. You know what I mean, and, and just doesn't feel like I'm reaching enough people I don't know they could just, it's, it's upsetting, like, and, and it's, it's and it's heartwarming at the same time. It's a weird space to be in. The way it feels is distasteful to say out loud, but it, but it's like, it's like that last episode of Schindler's List, when Oscar Schindler realizes he's wearing a pin that he could have, he could have sold it. Yeah. Like, it's not, obviously, this is not an apples to apples comparison, but like that feeling of I was out here doing everything I could, and I still didn't cover it the way I feel like I could have, yeah, and then, and then days pass, and I get older, you know what I mean? And I'm like, I don't know how long I can keep this going for so and then what happens to everybody after it's gone?
Unknown Speaker 1:30:24
So you think, hey, that's giving me anxiety. You
Scott Benner 1:30:27
think you're bitter, I'm dark too. Like, I'm trying to, like, you know what? It's funny, it's like, it's Be careful what you wish for. Like, what's worse than not helping people, helping people, and then not being able to help the rest of them like now, it's tangible like before, it's just a wish. I think I could help people, but I couldn't figure out a way to do it. Oh well, but I actually figured out I could help them, and now I can't figure out how to get to more of them. That feels like a failing for me.
Speaker 1 1:30:58
Excellent. I think that just makes you a good person, an honest person, someone with integrity. Do you know what I mean? Like you care. I think that's admirable, okay, a good quality to have, even though it makes you dark.
Scott Benner 1:31:11
All right? Well, I'm not, but I'm, generally speaking, I'm not, you know? I'm like, I'm upbeat, I know, yeah, I just That's all this was upset you you bump me out. Heather, no, it's not your fault. Don't worry about I'm just trying
Speaker 1 1:31:23
to recruit people into, like, the dark chat group you're gonna create. I just
Scott Benner 1:31:27
want people in the in the WhatsApp called bitter Heather. Well, listen, I actually think there'd be value on that. So
Speaker 1 1:31:37
it would have to be balanced, because, right, like you want to vent, but then you want to let it go. Yeah,
Scott Benner 1:31:43
it doesn't. It's not gloomy or anything like that. Afterwards, it's just like, This is how it feels. And I just want to know that other people have felt this too. So I just looked at my email. Hi, we are two days into our two year old being diagnosed. I just finished episode three of the Juicebox Podcast. This diagnosis is another kick in the face to our family that's dealing with another chronic illness already. I really appreciate your words. I feel broken, so broken. Thank you for some hope now you would think that I'd read that and go look at this. I'm going to help this person, this little two year old kid, is going to have a better life, and his parents are going to be better off because they found this podcast two days into it. I know that's true because I've seen it happen 10s of 1000s of times, but they'll but later I'll just think, like, how can I find more people like that to help? And then that sounds pompous, doesn't it? And then that's a different problem. God damn it. Heather, that's not what it is. Yeah, I know it's not, but it sounds somebody right now is listening to a gun. Oh, this asshole thinks he can help everybody. Let's see Jesus ran around. I don't feel that. I don't feel like that. I just, I made this thing overwhelmingly, it helps people. I just want to give it to them. You know what? I mean?
Speaker 1 1:32:55
Yeah, that's all. And that email is, like, heartbreaking all
Scott Benner 1:32:59
day long, all day long. Like, don't stop sending emails. But some days I click on that, I'm like, oh, here we go. You know what I mean? You're like, it's, it's time to, like, absorb somebody else's sorrow for a minute. And like, because I really want to, I want to feel what he's saying, This guy, you know what I mean, into this person. If you ever hear this, you're going to be like, Oh, my God, that was five years ago. I guess he's on episode three. He's gonna, like, this kid's gonna be 17. He's gonna be like, Oh my god, I think I'm the one that sent that email. I don't know, Heather, we gotta stop. This is costing me a lot of money over time. Editing. Okay, all right, don't fit. And also, I don't want Rob feeling bad. He should get paid for his work. You know what? I mean, you don't even know who Rob is. You're like, Well, no, he's the guy that edits the show. It's fantastic, by the way, all right, light, hold on. I'm gonna say goodbye. That's enough of this. You were great, by the way, thank you. I was so great to talk to you. Thank you. Oh, no, I had a great time. Hold on one
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