Scott Benner 12/18/24 Scott Benner 12/18/24

#1386 From JAX to Indy

Stephanie uses a Mobi pump and has had type 1 for 26 years.

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Scott Benner 0:00
Welcome back, friends to the Juicebox Podcast.

Stephanie's had type one diabetes for 26 years. She's 46 now, and she advocates for herself along the way. Today, Stephanie uses the mopey pump, and we're going to talk a great deal about it. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. When you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. AG, one.com/juice, box, don't forget to save 40% off of your entire order at cozy Earth com. All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com don't forget if you're a US resident who has type one, or is the caregiver of someone with type one visit T, 1d exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help. Guys, the end of the year is coming close, and I just want to thank you for another record breaking season of the Juicebox Podcast. Thank you so much for listening, for sharing and for supporting the things that I'm doing here with the Juicebox Podcast and on Facebook. I'm having an on body vibe alert. This episode of The Juicebox Podcast is sponsored by ever since 365 the only one year where CGM that's one insertion and one CGM a year. One CGM one year, not every 10 or 14 days ever since cgm.com/juice box. This episode of the juice box podcast is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, us. Med is where my daughter gets her diabetes supplies from, and you could too use the link or number to get your free benefits check and get started today with us. Med, this show is sponsored today by the glucagon that my daughter carries, G VO, hypo pen, find out more at G VO, glucagon, com, forward slash, juice box.

Stephanie Reiner 2:28
I'm Stephanie Reiner, and I was diagnosed with type one diabetes when I was 20 years old, which was July 5, 1998,

Scott Benner 2:37
9002 1008. 18, and then, like, what? Seven? Almost 626. Years? Are you 46

Unknown Speaker 2:45
Yep, I'll be 47 the end of

Scott Benner 2:47
the year. Me. So what happened? Fireworks, scare you gave you diabetes,

Speaker 1 2:53
right? No, I, I went to Wales on spring break in college that year, and everyone on the trip got sick with some sort of respiratory flu type thing, and no one was diagnosed with anything, and it just lingered. I graduated college early at 20 and was excited. I booked a international tour to be a vocal soloist and the dance captain, and then that was for the fall, and then for the next spring, I was supposed to tour the US singing and acting, and so I just needed to fill the summer. So I went to work at a summer camp in a very small town in Indiana, which I'm from Florida. So I knew nothing of Indiana. That week, I started getting sick, but that week, they made us work in the kitchen, and I discovered it was grade D. Government donated meat. So I was like, this might be why I'm and a friend from Florida had also gone, and he was getting sick too. But then by that Friday, I slept for like 20 hours straight, got up, went to dinner with them, went back to bed, and then Fourth of July, went to a party at someone else's house. Then we went to a concert as I was going to the concert, I hit my head getting into the car, so I had a massive headache. I remember being really thirsty, so I got like an icy because none of the drinks sounded good to me, so lots of sugar. And then I slept through the entire outdoor rock concert. So I slept through the Fourth of July, and then when I woke up on the fifth I could barely walk and was sick, and the previous day's dinner came up the same way, smelling the same way. So my digestive system apparently had already shut down. I was driven to an acute care place where they wouldn't give I was just like, can I please have water or ice? And they were like, we don't have ice. And then me, with a swollen tongue, who can barely talk, proceeded to read them the riot act about as an acute care clinic. They're required to have ice because of the nature of the injuries they deal with. Because I had worked at acute care clinic a

Scott Benner 4:52
previous summer, that's where you went,

Speaker 1 4:55
Yeah. And I'm like, Look, if I can't have ice, I can't have ice. But don't tell me you don't have ice. And all of that's where the. Swollen tongue. So I'm sure it was very easily understood, by

Scott Benner 5:04
the way, had we cooked your tongue? It maybe smoked it for a couple of hours at 225 degrees, it would have been better than that meat you were eating in the cafeteria.

Speaker 1 5:11
Yeah, it was bad. That was about it. They were like, you can have something after you see the doctor. So they gave me water, which you should never give to someone who's that dehydrated that their tongue is swollen, so like, what popsicles I had taken down came right back up, and then they had me get on the phone with my parents, who were in Florida, and I'm just so lethargic and my tongue is swollen that I'm like, I don't even want to talk to them, and I'm like, whatever. I just need to sleep. You guys talk to the doctor. So they decide that I should go to the ER, and I'm still like, if you just let me sleep, I'll be fine until we got to the ER, and there's a nurse waiting outside with a wheelchair. They take me back into a room. There's six nurses and a doctor waiting on me, and they immediately start to work, and I'm like, I'm going to die. They don't care if I have insurance or if I can pay because all these people are waiting. And they immediately started working. And that's when I knew it was serious. I had a really bad headache, and it was my heartbeat was elevated all the what I know now is classic DKI symptoms, but as someone who's danced my whole life and I played a couple of RC sports and intramurals in college, they were telling me that I had too good of muscle tone to be a type one diabetic. And, yeah, yeah, exactly, yeah. What? What type of I

Scott Benner 6:33
mean, you've had diabetes for a long time now. Do you see any correlation between that? No, not at all. But listen, I think it's such a you're not going to say a more damning thing in this entire conversation. Maybe, maybe you will then I knew I was sick when they didn't ask me if I could pay for this.

Speaker 1 6:48
Yeah, that's when it got serious. So they did. They did a spinal tap and they did a CAT scan, all because they knew my blood sugar was elevated. But they were looking for other causes, and they couldn't find another cause. So after several hours in the ER, they moved me up to an ICU, and they decided that I'm so dehydrated that they have to do a central line. But they've never done that on anyone who was conscious, so they are a little nervous, and they keep asking me questions like, what's today's date, and who's the president? Why you have a Florida driver's license. Why are you in Indiana? So, like, my medical records have this whole paragraph about how I just graduated from UF with a degree in psychology and blah, blah, blah, blah, and I was supposed to go on tour, and I'm in town working at this camp and all this type of stuff. And then it's like a patient is amazingly co parent, according to body chemistry, she should be unconscious. So they made,

Speaker 2 7:39
hey, who was the president in 98

Unknown Speaker 7:43
I don't remember. I'm

Scott Benner 7:45
testing your recollection of the moment, not of the President. That's all, yeah, I

Speaker 1 7:49
don't Yeah. I haven't read my medical records in decades. But then they want me to sign a release, basically that, you know, if they kill me doing a central line, it's not my fault. But I'm so out of it and exhausted that I'm like, signing instead of using my hand, I'm like, using my shoulder to move my arm, because I'm just I don't have it in my muscles. And then I look at my signature, and it looks nothing like my signature. So I started laughing, and they all get relieved, and they look at me, they're like, what's so funny? And they're like, talking to me like, I'm five years old. And they're waiting for me to be like, there's purple elephants dancing on your head, you know, because it means I'm about to pass out, and instead, I'm like, well, that doesn't look anything like my signature. So if you kill me, I don't know that that would stand up in a court of law.

Scott Benner 8:28
They're just like, if this girl would just pass out, we could give her this line, yeah, not

Speaker 1 8:32
appreciate that. So then they basically, they're like, Okay, you have to take a deep breath and bear down and don't breathe again, because we're going to do a central line where we go through the muscles of your chest straight into your heart, if you move, you can create an air bubble that would go directly into your heart and kill you immediately.

Scott Benner 8:50
Wait, I could? I feel like you could. I don't want to sign that. Give me that back, right, right?

Speaker 1 8:54
So that's what I did. They just numb. They did a topical numbing. And then you feel everything else, and you just take a deep breath and hold they got the central line in, and then this was a teaching hospital, and this poor resident, I don't know what he was, intern, whatever comes up, and the doctor had sent him to get me a popsicle, because that's all I had been asking for the whole time I was there. And he comes back and he's like, we don't, she can't have a sickle. We don't have any sugar free popsicles in the whole hospital. I've been any names all the floors he's been to. And

Scott Benner 9:26
the doctor on the first floor, I've been third floor. I was on the fifth floor, exactly.

Speaker 1 9:30
And the doctor just looked at him and was and read him the riot act, like, up one side and down the other. He's like, I don't care if it has sugar, it doesn't have sugar. Do you see what we just did to her? We're gonna put her on an insulin drip anyway, get her a popsicle. I don't care what type it is like. So then I wound up in ICU, and by this time, the people who worked at the camp and my friends and all the other counselors were all like waiting outside, so they let three of them come in. At that point, it was already after visiting hours. Hours, but they let them come in, and they're all just like, staring at me. And when all this happened, I didn't know at the time, but my friend from Florida got like, had gone to buy me popsicles and took it back to the camp. And as he gets to the camp, the guy who leads the camp was leaving and was like, why are you here? Stephanie's in the hospital. So they turn around and come back to the hospital. He walks in the ER, as the doctor comes out and goes, Look,

Scott Benner 10:24
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Speaker 1 12:43
we don't know if she's going to make it. If there's anybody you should call, you should go ahead and call them now.

Scott Benner 12:48
Your friend who's on a popsicle run was told you weren't going to make it. Maybe, yeah, when

Speaker 1 12:51
he walked into the ER, that's what the doctor told them. And there's like, you start, should start calling people. So he's the only one who actually, like, knows me. Stephanie,

Scott Benner 13:00
contextualize this again, you're in what state and where is your family?

Speaker 1 13:04
My family's in Florida, and this has happened. I am Indiana, Indiana, okay, and this guy who he and I sang in a touring ensemble together and stuff like that, he was working, we happened to choose the same summer camp, which literally is what saved my life, that we chose the same summer camp, and so because he's the one who found me that next morning when I couldn't move, he had gone to get popsicles, was sent back to the hospital, he walks in to the ER gathering with the other people from camp. When the doctor comes out and says, we don't know if she's going to make it or not, you should start calling people. So he starts calling all of our friends in Gainesville. He does not have my parents number, so he does not call them. And then one of the girls who was in a touring ensemble with us calls my parents, and she's hysterical, and she's like, I'm so sorry. Is there anything I can do? And my parents are like, they have no idea why she's so upset, because they talked to the doctor at the acute care clinic who made it sound like it wasn't any big deal, and I would be fine. Yeah. Then they get a call a little while later from the ER doc, who says scale of one to 10, Tim being fatal. We don't know if she's a nine or a 10. You need to get here tonight. So they immediately tried to book flights. There was a flight out of Jacksonville through Atlanta, but it wouldn't get to they would miss a connection in Atlanta and they wouldn't make it to Indiana. There was a flight out of Orlando that they could take, but summer of 98 was very dry in Florida, and we had massive wildfires that the smoke had shut down I 95 so they couldn't get to Orlando either. So they drove the like 14 hours across country, not knowing if I was going to be alive or dead. And that was like 98 when people didn't really have cell phones like that, and cars still sucked, right? Yeah, okay, yeah. So they got there the next morning, and I was conscious, and I. Could talk a little bit, but I was just very weak. And so I was in ICU for a couple days, in a regular room for a couple days, and then they dismissed us. The Diabetes training was awful. I had some lady who was much older than my grandmother talking to me about, you know, doing a syringe and an orange because it feels the same. And then she wanted me to poke her and give her a saline shot before I gave myself a saline shot. And I'm like, yeah, no, I'm I, I will give it to myself. They hired some

Scott Benner 15:32
old lady who's a masochist. They're like, she's like, give me a shot, please. Orange,

Speaker 1 15:36
a couple shots, but I'm not going to give you a shot, lady. And and my skin feels very different than your skin, you know, because of collagen, yeah, so it both feel the same. And I definitely don't want to, like, leave a massive bruise on some random lady. So because I've been pushing through an orange then my mom, my dad, and my dad, once he found out I was going to be alive, your

Scott Benner 15:59
dad was like, I wasted this trip. I took a day off from work go back to Florida

Speaker 1 16:03
because my sister is, my sister's three and a half years younger than me, and so she was, like, in high school at the time, and so she was, like, staying with my grandmother. So my dad flew back, and then mom had to drive me back, and so she was begging them to, like, discharge us from the hospital early in the morning because we had a really long drive. And drive. And of course, we were discharged, you know, in the early afternoon instead. And I had to, like, lay down the entire trip home, because my eyes were rehydrating, so everything was going in and out of focus and was blurry, and it just, it was awful. So I couldn't really help, I couldn't help her drive, and she's looking at a 14 hour drive. I had to go back to school for insurance purposes, so that it because this is before insurance reform. So I went back to school. Just went to community college so that the summer was a quote, unquote summer off, and would still be covered by insurance versus diabetes, forever being pre existing never covered. Oh

Scott Benner 16:57
yeah, you had to keep you, had to keep yourself insured consistently so that you didn't have to go look for insurance again as a type one.

Speaker 1 17:04
Yep. So then I had to bail on the international tour that I had booked and the national tour because they would not allow type one diabetics. What kind of tour at the time, music were you singing? It's like a Broadway style for the international tour. I was going to tour US, Canada, Great Britain and Europe as their dance captain and a vocal soloist. They had never had anyone do that. So we're actually rewriting the roles and the entrances and exits to make it work for me. And then I had to call and be like, Thanks for rewriting it. But I have type one diabetes now, and I have to go back to school.

Scott Benner 17:36
Geez. Yeah, any other diabetes in your family or other autoimmune my

Speaker 1 17:41
dad's side has type two, nothing with type one. I had never even met a type one, and actually, I did not meet another type one for a couple years after being diagnosed, I didn't know of any on my mom's side, my mom did have low thyroid whenever she was pregnant with me, and because of my relationship with an endo later, she wound up on thyroid meds. There's not really any auto immune there. What you always ask is bipolar. I do have a relative who has bipolar, but otherwise nothing, no

Scott Benner 18:16
other auto immune stuff. Yeah. Also, we should be clarifying for people who don't, like, listen, like, like, Bipolar is not autoimmune, but it is very, uh, inflammation related, which is why I always ask about stuff. Plus I ask because so many people come on here, anecdotally, yeah, who have a bipolar relative, and I'm just like, at this point now, I'm like, anybody. I'm so stunned every time someone's like, Well, my uncle, I'm like, jeez, yeah. Crazy. Speaking of crazy, Arden has been getting her diabetes supplies from us med for three years. You can as well us med.com/juice, box, or call 888-721-1514, my thanks to us med for sponsoring this episode and for being long time sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox podcast.com, to us, med and all the sponsors. WILLIAM JEFFERSON, Clinton was the president 98 actually, this, this happened to you pretty much in the middle of the model. Lewinsky. Lewinsky, yeah, yes, that whole scandal, that's crazy. Kept saying popsicles. And I was like, I don't know, like I want to call your episode popsicles, my gosh, so you've had, well, I do want to go back a little bit. So you had to go back to school, but you went locally. It sounds like I,

Speaker 1 19:33
actually, I went back to school in Gainesville, where UF is, because I had been involved in the community there, and there was a dance studio I was teaching at and stuff like that. So, yep, so I went back to community college there, and I basically just took, like, dance and drawing and psychology classes. Do you still do those things? Yeah, I'm a choreographer, and I dance and sing and act professionally. Occasionally. Uh,

Scott Benner 20:01
professionally, occasionally, well, what

Speaker 1 20:03
that means is, I don't, that's I have professional contracts that I do, and it's just for one show, and then I don't necessarily pick up another contract to perform for a while. It has to be something I really want to do to disrupt my entire life. I see for it, because it's eight shows a week, it's

Scott Benner 20:19
just such a fun statement professionally occasionally, yeah.

Speaker 1 20:23
And then, like I do choreo, I'm paid to be a choreographer, and I, depending on the year, I can choreograph anywhere from two to six productions, okay? And then, since insurance reform happened, I no longer have to, like, work corporate, and then quit and go on COBRA for a year and a half before going back to corporate to be on a group insurance plan since that reform I tutor math and chemistry middle school through college. Oh, awesome. That's excellent, yeah, so it allows me a lot of flexibility. Yeah. Are you married? Do you have kids? I just got engaged a week and a half ago? Oh, congratulations.

Scott Benner 21:01
Yeah, no, kids, yeah. Well, look at you being an adult. Are you still in contact with the kid that found you?

Speaker 1 21:09
Not really. I mean, we are Facebook friends. It's not someone that I talk to regularly. You

Scott Benner 21:15
don't get a message every once a while, like, remember that time I saved your life? Yeah,

Speaker 1 21:19
no. It's more like every time July 5 comes around, someone from that camp will talk about, you know, how their life was forever changed, not knowing if I was going to live or die. Type of post happens, and then we all get tagged in it

Scott Benner 21:35
over the day Stephanie just disappeared. Remember the day that

Speaker 1 21:38
Stephanie went in the hospital, and then she wasn't at camp for the next month, and so we didn't have someone to teach drama or to sing.

Scott Benner 21:45
Oh No, kidding. Everything changed for this so everything, really, I mean, changed for you a lot more. But yes, okay, so throughout this time, it's a long time you've had diabetes, I don't know. I think I want to know about the shift between technology. I'd like to know what you've had to do to keep yourself healthy. You know, what are some of the like, rear view mirror things that you can look back on and say, These are the things I wish people knew about,

Speaker 1 22:13
yeah, when I was diagnosed, then they proceeded to give me, you know, like an exchange diet type of thing, where you I had to get up at eight o'clock and I had to take this mix of regular and NPH insulin, and I had to eat this many grams of carb, this many grams of protein, this much fat, this much fruit and blah, blah, blah, and on and on. And then at a certain time, I had to eat lunch, because that's when the insulin was going to hit, Ready or not, and there were certain things I had to eat. Then I had a choice. Around three o'clock in the afternoon, I could do a snack and eat dinner later, or I could plan to eat dinner earlier, and that would be a shift in my dose according to what I chose. It was not convenient that that shift happened right before, like a jazz class. So I'm like, shoving peanut butter crackers in my mouth to be able to go dance, and then I was required to, you know, eat a yogurt or something like that before I went to sleep. Every night, as a 20 year old, I would have to get up at eight o'clock every day, regardless as to whether it was the weekend or not, because of my insulin. It was difficult dating because it's like, Hey, I we need to go eat at this specific time. And these are the things that I need to eat, which, by the way, doesn't line up with any single menu item. So it's like, I'll take this entree and then I also need this side with this and this. And so I tried to follow it pretty exacting, but it was the most frustrating thing. And I had no hunger signals anymore, unless I was going low really fast and would shake.

Scott Benner 23:54
Is that because you were eating so frequently, you think,

Speaker 1 23:58
or like, hunger signals? Yeah, yeah. I have no idea, like, it got to where they'd be like, well, what are you hungry for? And I'm like, that. She said, I'm not hungry. I'm eating because I'm required to eat. I no longer, like, craved a pizza or a burger or something like that. From time to time. Has that

Scott Benner 24:12
gone away or changed? No, no. Arden talks about that, yeah,

Speaker 1 24:16
no, not at all. So it's the type of thing where it might be once every three or four months, and I'm like, Oh, I just really want a burger. And if I'm I've already planned to go out with friends and they're getting something else that's great. You can get whatever you want, but I'm gonna go to this place and I'm gonna get a burger and then I'll meet you, because I try to, like, reinforce the hunger signals that I have, yeah?

Scott Benner 24:35
But you try to, you try to pay your body back for telling you

Speaker 1 24:38
something like, yeah, thank you for actually communicating. Let's continue this. Here's the cheeseburger

Scott Benner 24:42
us for great a, exactly great a, by the way,

Speaker 1 24:46
that's right, no more government. Government donated junk. I, by the way,

Scott Benner 24:50
I have to tell you, I looked into it. The the D rating is not how they grade beef. But still, I like, I like the visual. Wait a minute. Hold on, I have a question. So you were like, as a young person, following this super strict schedule, and you were actually following it, right? So to the detriment of what it sounds like is your personal life and perhaps some of your happiness, but you followed it. Did it pay you back? Were you getting the health results that that you wanted?

Speaker 1 25:18
I didn't even know. Like what the health results goals were like when I came back to Indy, to Jax from Indy, I met with an indo and it was not good. Like, the first thing she said is, like she ranted to me about how I could never get pregnant until I had had a normal a 1c for at least nine months. And she literally meant a normal, as in, not diabetic, a 1c which, like in the fours, yeah, like in the Force to blow five, which I'll let you know when I had that. And she just went off about it, and then she turned around. She's like, look, we want diabetes to exercise, but dance is a very unpredictable exercise, so we're going to need to figure out something else for you. And I just stopped her there, and I go, Okay, let's just start again. I said, I'm Stephanie. I have diabetes. Diabetes does not have me. I dance. So you're going to have to find a way to make it work. And because I bucked up and kind of talked back basically, and was like, No, this is what I need. That's why I got the approval to go to school in Gainesville, because I had to have an endo sign off for me to be that far away. It's only an hour and a half away. She was like, as long as you come back every month and a half, I'm every three months, then I'm fine with you going to Gainesville. Wait, diabetes

Scott Benner 26:34
was changed. Was impacting your ability to move around the country if you

Speaker 1 26:38
wanted to. Yeah, within some of the insurance stuff, yes, oh, my God,

Scott Benner 26:43
that's, that's all crazy. You're old. No, I'm just kidding. I know

Speaker 1 26:50
I'm still here, yeah, so, but then I didn't get really education about, like, what insulin does and that type of I just knew you take this and that. So it was the type of thing where, if I went to a party and I wanted ice cream, I didn't have an intelligent way to dose for that, and so I would just randomly dose, and all I had was regular and NPH, and I would just dose for ice cream and not know if it was going to work or not work. And really had no idea that I could kill myself with insulin.

Scott Benner 27:20
I'm so stunned by that idea of that you didn't even know what your goals were. No, did you ever watch that TV show? Lost? You're old. You probably saw it. Yes, you remember they had to push the button. Yeah, totally. It feels like that. Yes, yeah. It just like, do this thing, and you're like, Okay, I'll, you know, I'm 20, but I'll go to, I'll go to the early bird special at 4pm and have dinner then, and, like, not eat anything and only eat this and blah, blah, blah. Why am I? But you didn't know. So you're doing this thing over and over and over again, but you don't know why. That seems very frustrating to me. It was

Speaker 1 27:57
incredibly frustrating. Like, all I and all I knew was about type two diabetes, and like all the complications that can happen because of type two and that's all that I knew. I mean, JDRF existed, but they did not do anything. There was no first diagnosis support or anything like that, where you were no and I think part of it also is because I was diagnosed in Indiana, and then I moved back to Florida. She

Scott Benner 28:21
weren't grounded anywhere, really, either, right? Yeah, I just talked to a guy in his 70, like, a 76 year old guy, and he credits JDRF for really helping him, because when they first started, it was the first time that you could get information that wasn't like at the library, right? And he was like, he's like, that really changed my life. So it would have been nice to have some information as well for you, but I just think I'm gonna go back to this for half a second, then I'm gonna let it go. But I want everyone listening. I don't want to break the fourth wall in our conversation. But wonder about how many things diabetes or not, you're doing every day, and you have no idea why you're doing them. I just think it's a deep question to look at yourself and say, How many things am I just automatically doing that I maybe don't even need to be doing, or could be doing differently or better, or maybe don't even know at all why it's happening. I just, I think it's an, it's an important thing to examine once in a while. But yeah, yeah, for sure. Okay, so you're out there with your ice cream, just winging it. Does this go well, mostly? Or Yeah, it did,

Speaker 1 29:25
yeah, it went pretty well. Yeah. It was a frustration. And you know, I would get gigantic black bruises where I had nicked a vein or artery or whatever. You

Scott Benner 29:36
should have stuck the lady in the hospital. You would have learned,

Speaker 1 29:38
well, can't help it when you hit a blood vessel, which you know is more noticeable when you live in Florida and you go to the beach all the time and that type of a thing. But you were rejecting a lot. You're saying, Yeah, well, I only, and there was no pump option for me at that time. And then so that was like a year, and I taught dance, and I and I. Went to community college, and then I got a job back in Jacksonville, where I was a part time administrator for an arts institution, and then I taught drama and dance there so that it wound up being full time between all the hours, so that I qualified for their insurance. And that made me switch to Mayo in Jacksonville, and that endo told me, because I was asking about a pump, he told me not to even consider it that the pumps were not good enough and diabetes would be cured in five years. That was back when you were 20 that was when I was 21 Yeah, that was a 99 Okay, yeah, you know, and so I'm, I'm testing my blood sugar tons. And you know, anytime that I'm dancing, I'm testing before I'm dancing, and then if I feel shaky during dancing, you know, I would check it. But really, for the most part, like I was probably coasting a little high and didn't know any better, didn't know kind of what goals I should have pre and post exercise and that type of thing. Because basically they just looked at my numbers, like, yeah, you're doing fine. And by doing fine probably meant that I was like, 6.8 to 7.2 on a 1c Yeah, with no CGM and no

Scott Benner 31:13
pump and back then, no idea if you're like, bouncing up and down or anything like that. Right?

Speaker 1 31:17
Standard Deviation doesn't exist into that. And then I moved to Dallas Fort Worth. I dance part time with a professional dance company, and then I was also working corporate, and my indo in Dallas was phenomenal, and they were involved in a ton of research. And so literally, the day or day after that, the 24 hour insulin and short acting insulin became approved in the US I had it. When was that? That was like, in 2001

Scott Benner 31:50
ish, only three years until the the cure. So you were probably right. Did you actually live thinking that that, oh, this will be over in five years? No, okay, because,

Speaker 1 32:00
and that's more of a personality thing, it's like, I can't, like, I'm not banking on anything right out there, as you know, a constantly moving target, like I'm doing the best that I can with what I have right now to set myself up for what I want to do. And so a lot of it was fighting against the current of, no, I still want to perform, I still want to dance. I still want to have that option. Because everything that they wanted me to do, from from an endocrinologist appointment was, please, just have lived the same life every day and like it was a Groundhog Day is was the solution, so that your life is completely predictable. And I'm like, That's great. That does not work for me. Personality wise. I like things that are spontaneous and changing and shifting, and I like that energy and interaction, and so I want to have that flexibility, besides the fact that, yes, I dance and do choreography, and sometimes, if I'm teaching a class, I'm dancing the whole time, and sometimes I'm teaching a class, I'm dancing very little, and I'm just doing small corrections. And yes, that is more difficult to manage, but it's what it's worth it for me, and I want to do it. And so that has been a big part of the fight throughout, is to to have flexibility built in to my diabetes management. And so I had to, you know, push against endos. That endo was great. Unfortunately, a year later, well, so I guess that was around 2000 because then 911 happened, and the company I was with went through layoffs, and I went in the third wave of layoffs. So it's like it was on my one year anniversary with the company I had uprooted my whole life and moved to Dallas Fort Worth, and I was there. And so I went on COBRA, which is very expensive, and I continued to do choreography and that type of thing and look for work. And I, in the meantime, I made a dance company, and we danced in Dallas Fort Worth for a while. We toured that next summer. We toured Florida for six weeks, and we went and danced in Norway for 10 days. And then I went back and got a corporate job because Cobra was ending, and I did recruiting. And then I went into purchasing management. And with that insurance, it required a different endo who I had a string of some bad endos in Dallas, Fort Worth. One messed up some medication so bad that they, like, took it out of my record, because it could have killed me, and I don't even remember what it was anymore. Sorry for that little tidbit, just to tease you with and then be like, I don't even know what it was. Um, so I changed doctors. I had found this great one, and he was phenomenal. And then he got stomach cancer, and he had to quit his pack practice. The lady who took over, like proceeded to berate me every time I went in and tell me how, you know I was killing myself, and I was doing this, and I was doing but there was no education that went with it. Trust me, I met with diabetes educators, and they're like, you know how? You know what to eat, and you know what this is, so you're doing fine. The lady her her way. Was to scare and intimidate people, and it was so bad that they, like, they had me go out the back door so that no one in the lobby would see my face, because I had been so angry, like, I cry when I'm angry, and my whole face was red. So they didn't charge me for that. They didn't want record of it. But they pushed out the valley, yeah, pushed me out the back door. They're like, dance away. Stephanie, yep, so and then around, I don't know it's like, 2003 2004 I wound up in the hospital with DKA. I didn't know that insulin that like, I should look at my insulin closely and know that it's not cloudy like, and that type of like, it had been kept it wasn't, it was a new vial, but the vial I got was cloudy, and I didn't know any different, like, I took it into the hospital. So, like I was I went into DKA, but I was treating myself repeatedly, and it wasn't coming down. So when I went in, unfortunately, this hospital typically deals with type twos, and I'm in the ICU, and then internist comes in. He's, you know, treating him, whatever. And then they go to give me a meal, but they're only they give me insulin, and then I eat, and I go to bed, whatever. And then they they check my insulin, my levels, before I go to bed for the night. The next morning, they're checking it, and I realized that, because my blood sugar is okay, they're not going to give me insulin for my meal, but they want me to eat breakfast. And I'm like, No, I can't eat breakfast without insulin. Like, I knew that much. And they're like, No, you have to. And I'm like, No, you don't understand. I can't. And so they're like, it's doctor's orders. Blah, blah is like, Well, I'm not going to eat. And I just, I was like, I'm not going to eat if you won't give me insulin. So then the doctor comes in. He's mad because I have threatened his authority. I don't know. I'm non compliant, clearly, so I literally drew a picture for him. I'm like, okay, so I eat. I eat. Here's the simple carbs, are in and out in an hour. Here's the complex carbs, they're in and out in two hours. Here's your fat and protein. They're hitting about four hours. They stay till about six and then they're tapering off. This is why you want to balance meals, so that you have balanced blood sugar. I was like, however, was like, however, I don't release any insulin to combat this. This is why I need insulin. And he went off, and he was angry, and he's telling and so mind you, at the time, I was primarily dancing, and so he goes off and tells me that the reason I'm in there is because I'm out partying and drinking every night. And he just went on this tirade about, clearly, you know, a a young to mid, 20 something year old woman, that's all she does, you know, and she's not taking care of her body, which, as a dancer, that doesn't quite work. I just looked at him and I said, you're fired. I said, I'll take another doctor

Scott Benner 37:39
so, but yeah, I have to tell you. Like, it's incredibly common to hear from younger people that someone just takes the leap and goes, oh, you know you're struggling or whatever, because you're out partying all the time. Like, were you out partying

Speaker 1 37:52
all the time? No, no, I wasn't. I didn't even drink it's so funny.

Scott Benner 37:57
It happens constantly. Like, you know what it almost is like, like, you know how you kids are like, Oh, great. Just lump me in with everybody. That's fantastic. I

Speaker 1 38:03
told him, it's like, no, I'm I'm a dancer, like, I cannot do that like and and perform well. And he just continued. So I said, Okay, you're fired. So then a little while later, another internist came in, rather hesitantly, like I was going to throw something at him, and clearly had been told I was non compliant. He's like, Well, why don't you tell me what the problem is? And so I showed him. I'm like, here's the graph I just showed this guy, and this is why I won't eat breakfast if you won't give me insulin, because the only normal blood sugar I will have during my hospital stay is in the morning you're going to keep feeding

Scott Benner 38:36
me. Did that help? Did the second person go, oh, okay, hold on, let's get you some insulin.

Speaker 1 38:40
No, you know what he said? He's like, wow. You know this better than we do. We pre we primarily teach type twos. He goes, so why don't we do this? I'll get your body chemistry in order, and you manage your blood sugar. I'll give you, I'll let you dose your own insulin. And then that's when we saw that. It was cloudy. And he's like, we need to get you new insulin. I didn't know because I was like, it was a new vial that came from the pharmacy, but at least you found a reasonable person. Found a reasonable absolutely and so then he's like, Okay, once we get, once I get your potassium leveled out, he's like, I'll write you a note for work that says that you need to be on bed rest for a week, and then that you do half days for the week after that. But he pretty much, he's like, we don't we don't know how to treat type ones. We treat Type twos primarily.

Scott Benner 39:20
I'd like to get a script for bed rest for a week. You think the guy that makes this podcast would let me go? I want to, I'd like a week off. That sounds awesome. So okay, so you found a reasonable person you get your cloudy insulin fixed, etc. That good. That's awesome. These kind of things continue to happen through life with diabetes. Or does it change as you like. Do you find yourself in the hospital over and over again as the years go by? No.

Speaker 1 39:45
The only other time I was in the hospital was a was shortly after I went on the pump with a bent cannula, okay? And that was the only time, and that was an easy fix.

Scott Benner 39:53
Listen, it's an interesting look at what it was like back then. And, yeah, I think because you fought back. And had a tiny bit of understanding. It's, you know, understanding that it seems like you build on your own. It's not like anybody came along and gave it to you. So I think it saves you, because you weren't even in the like the late 80s, you were like the late 90s, and still everything was janky as could be. I don't know that. It's, I don't know. I mean, the technology is better, the medications are better. I don't know if the on the ground understandings any better, but Right, yeah, you saved yourself. You really did. Because if you would have just listened to them, you'd be in a completely different health situation today. Absolutely. Yeah, yeah. If I, if I wasn't the personality that that advocates for myself, I would have been totally in a different place. Yeah, you have no idea. And do you have any complications today? No, well, good. I'm glad for you. But I mean, it's, it's literally, I know too many people were like, Hey, I did what they told me. And, yeah, absolutely, yeah, yeah. Now let me tell you about what it feels like to get a needle in your eye 1000 times, right, right.

Speaker 1 40:59
So then I moved to Indiana, yeah, and that's where Eli Lilly is, and I had a phenomenal indo there. He asked me if I wanted to be on a pump, and I told him what the mayo doctor had said, like, 10 years earlier. And he's like, no. He's like, we need to get you on a pump. And so he's the first and only indo who advocated strongly for me, and he fought with me against Blue Cross, Blue Shield of Tennessee, and I was the first person that got approved for an insulin pump and CGM. You

Scott Benner 41:27
didn't tell them, I don't need a pump. They died. They cured diabetes five years ago, right? Yeah, I'm all good. Like, did you not hear by the way, I don't know that we've ever truly cured anything, anything. Yeah, we eradicate things, usually through vaccines. When you think about what it means to be cured, like, right? Like, you're talking about, like, there's something wrong with me, and then something else is introduced, and now that thing is not wrong anymore and doesn't come back, right? I mean, I think there's, like, certain kinds of cancers that they can they can completely, like, get out of you, like, but I don't know what people think when they think cure. You know what I mean? Let me ask you a question. If they could stick a packet of cells in you that your immune system couldn't get to, and therefore you didn't need, uh, anti rejection meds, and your body just was like, boom, I don't know. They put in some new beta cells. You're making insulin. You're all good. Are you cured? Or do you just not need man made insulin anymore, because there's a device in you, right?

Speaker 1 42:29
Yeah. You know what I mean, absolutely. Yeah. If you're defining cured as the body being restored to how it originally functioned, that's not happening. If you're talking cured in that I'm not needing a synthetic insulin anymore, that's a different story, right?

Scott Benner 42:46
Yeah, and I'm probably like, I wouldn't, no one would turn their nose up at that. I don't think Correct, yeah, it's just the word is, I don't know. I think it's misunderstood, perhaps, you know, to some degree, commingled with other ideas. You know, if you could eradicate my daughter's type one diabetes, but, you know, she still had the autoimmune issue that, like, put her there. I mean, I think I'd take that as a pretty big win, you know, but it's just, it's funny that, like a doctor said to you, don't worry, this will all just be gone soon,

Speaker 1 43:14
right? Yeah, it's like a magic eraser. Don't worry, everything's fine, yeah, oh my gosh. So he just, he fought with me with insurance, and I got Blue Cross, Blue Shield to give me an insulin pump and a CGM. Before that, I was doing a minimum of eight shots a day to give myself flexibility, to be able to dance and rehearse as well as work corporate and eat when I was hungry or not really hungry. But, you know, close to it, versus just eat on a schedule, so to give myself the most flexibility. And that's why he wanted that's why he helped me get a pump. But the problem is I wound up being allergic to the CGM. It was Medtronic. I was allergic to their original CGM, the one that looks like sliced mushrooms. And they couldn't figure out why, and so I just basically dropped, you know, three to 5000 on a useless something, and then I had the pump. It was great. Unfortunately, once it got approved, he died, but endo and I wound up with his partner who had no bedside manner. He's the one who told me that I would be in this horrible position until I learned to say no to people. And I'm like, I don't think you understand. I'm a purchasing manager. I negotiate multi million dollars deals with Exxon and Dao, and I have no issue speaking my mind and telling people, no, wait, what did he think? You weren't sticking up for? He said that I wasn't prioritizing my health, but he didn't ask me what I did or what I didn't he just it was his typical speech that he gives every single patient I found out, oh, he primarily worked with gestational diabetes, and then he had to take over his partner's patients until they could get somebody else in there. And I told him, I said, well, until you see the patient in front of you, and so the one in your head, I'm not getting anywhere. You're telling me

Scott Benner 44:55
that. Basically, he looks up and goes, diabetes, I'll get. Give them this old chestnut and then tells the story,

Speaker 1 45:02
yes. Ah, there you go. Yeah, yeah. So that was that guy. And then I moved back the Northeast Florida area, which is where I'm from, and have been with the same endo pretty much for the last 1011, years. And really, a lot of it at the beginning was just like, I needed someone who would listen and who would validate and would dialog with me and kind of get over the different trauma of the different people who would yell at me as endos. And I'm like, I don't, but you don't understand that's not what this is. And that was great. Now, since insurance has been pushing back on different scripts and stuff, he would do things off label, but the last three to four years, not so much. And so I don't know how much I will stay with that Endo, because you're doing better than 99% of patients anywhere. You know, my A once I have switched over, once my Medtronic was up for warranty, I switched over to tandem. I was on the freestyle for a while because my Medtronic, you know, wouldn't cooperate with anything. So I just did a FreeStyle Libre. And then just by adding the FreeStyle Libre with the Medtronic pump, I was able to take my ANC from a 6.8 to 7.2 and then it dropped down to more the mid six range, 6.4 to 6.8 and then we went to once that was up, I went to tandems pump, and then with the Dexcom and the basal IQ, and then to control IQ. And with that, then I was pretty much maintaining about a 6.2 without a lot of work, awesome, but a lot of it is, you know, I'm tweaking my settings. He's not. He confirms it. And like every, you know, I he only wants to see me, like, every four to six months, because I'm doing it all. But I'm like, Yeah, but I'm still patient. I would like to have someone to dialog this through with and to look at which ways can we tweak it better. I may be doing better than 99% of the people, but that doesn't mean that I'm doing the best that I can do, because I would love to have as close to normal a 1c levels, provided that I'm not, you know, doing the standard deviation game of dropping down into nothingness. That one fascinates

Scott Benner 47:06
me too. Like, you're like, hey, I have a six, eight. I'd like to do better. And they go. A lot of people in this office have a 10. What does that have to do with me?

Speaker 1 47:14
Exactly. That's what I told him. I was like, I said, I'm still paying you for a session to be my doctor, and that means that you have to You're treating me where I am and taking me to the next place. You

Scott Benner 47:25
got to realize he feels like you're a win. Yeah, exactly. You're checked off the list. You're like, Stephanie done. Don't need to do anything very here's your scripts, honey. Get out of here. Yeah. No, no, that's awesome. What pump do you use? Modern day today? Now

Speaker 1 47:38
I'm on the Moby. I went on that at the beginning of March, my tandem pump went out of warranty in August of 2023 and I really adamantly wanted the Moby. I knew it was going to be coming out, so I refused to sign up for a new one. And they're like, No, you can change over for 1000 bucks. I said, or I can stay with this, and my insurance pays for it, so I'm going to wait you out. And they're like, Well, what if your pump malfunctions? You won't get a warranty. I was like, then I'll switch over to prescription benefits and do Omnipod for a while, and maybe I'll come back to tandem. Maybe I won't

Scott Benner 48:11
just, is that just a sales person or a doctor trying to shake you out of that 1000?

Speaker 1 48:15
Doctor, oh, no, not. Doctor, just tandem is tandem constantly calling me every month about my out of out of war, and I just was honest. I was like, Look, I'm going to continue with my out of warranty pump. I'm not going to have my insurance lock me in to this brick. It's not a brick, but what felt like a brick, because when I'm going to perform on stage, where do I put that that doesn't show in a costume, if I'm dancing or other times with you know, if I'm doing more of a stage play, then where does it go in that so that it's not showing and everything? And so I was like, I don't want it. I want the Moby. Can

Scott Benner 48:48
I ask you? So you wanted a small footprint and but you did, but you wanted to stick with their algorithm, because you could have gone to Omnipod. So you but you will like the tandem algorithm.

Speaker 1 48:59
I like the tandem algorithm. It's also with Omnipod. It is prescription benefit, which is a lot more money for me. Oh, your insurance doesn't cover it as well. Yes, because my insurance, my durable medical, is paid at 100% I

Scott Benner 49:12
see, yeah, so Okay, well, that even makes more sense. So it wasn't as much about like the algorithm, as it was about the cost.

Speaker 1 49:19
I knew the algorithm worked for me. So I was planning. And so I'm good with staying with I would have been fine with trying the Omnipod algorithm had it not been cost prohibitive, comparatively, I understand.

Scott Benner 49:29
Okay, so how long you've been wearing it, since March? Can you tell me a little bit about it? I don't know. You might be the first person I've spoken to who's wearing it. What

Speaker 1 49:36
do you think I love it? I mean, it's the same algorithm is the reality. So there's not a big switch for me in that way. The new option is, obviously, it's literally half the size. It's slightly smaller than an air pod case, carrying case. I personally like the clip that comes with it. Some people have trouble getting it in and out. I don't have that issue. I like that. I. Can put it in a coin pocket of my jeans. I can hook it on my jeans. I can hook it at the center of my bra, and it stays, and it's out of the way and it's not visible, because I don't have to ever touch the pump, because everything is run on my phone. I can tell you that, like, the first month and a half that I had it, I felt like I had this irrational anxiety of I had to have my phone up under me and on and fully charged at all times. I had that little freak out type of a thing, but it's not there anymore. I did have some issues with with bent cannulas, or just poor absorption with the with the five inch tubing, because when you go to insert the five inch tutor tubing, when you pull it back, it's much more stiff than any of the 23 inch tubing, so it's easier to dislodge it, or have it slightly crooked, so that when you go to apply it, it doesn't go in straight, and you wind up with a bent cannula. So on my arm, I like I tried wearing it on my arm with the sleeve, because great. I don't have to worry about where I put it in my clothes, inserting it on your arm by yourself with a five inch that was really tight, pulling back, I had a lot of Ben keynotes. There's a massive learning curve for that. As someone who been using the 23 inch for five years, okay, there was a massive learning because

Scott Benner 51:15
so with the Mobi, for people who maybe don't understand, like, you can do it like on body, right? Like, there's like an adhesive sleeve you could put on and then slide it in, and then just use that short five inch cannula, and then kind of keep everything, the infusion set and the pump right in the kind of the same spot on you, stuck to you, not having to clip it to your clothes. But that shortness of that

Speaker 1 51:37
tubing, is tubing, yeah, not cannula, five inch tubing. Yeah,

Scott Benner 51:41
sorry, sorry. So the shortness of the of the tubing is, like, kind of creating, sometimes, like creating a learning curve where you had to, like, really figure out how to put that in straight without bending the cannula. Yeah? Well, and

Speaker 1 51:52
you're balancing, because you have to balance the Mobi on your arm while you're trying to insert it on your arm, all one handed, because clearly, my elbow doesn't go that way up to hold it. Yeah.

Scott Benner 52:03
So are you wearing it with the adhesive sleeve, or do you prefer the longer tubing and just clip it to your clothing?

Speaker 1 52:10
I use the 23 inch most of the time because it allows me to move the pump to wherever I want for whatever I wear that day. So like, if I'm wearing a dress, then I can just pump it. I can cook it into my bra, in the center on the back, wherever I want, and it stays. And I don't have to worry about it. If I'm wearing shorts or, you know, jeans or whatever, I can hook it on the the waistband of that, or to the pocket of that, and it lets me change it around to I want to put it in the back because, you know, I'm wearing something that's more fitted, and so I'm going to hook it to the back of something that allows me to have the option of whether it's seen or not seen, and how accessible it is by doing the 23 inch. When it's summertime in Florida and I am, there's a water park here in my neighborhood. I'm going to go to the water park, especially when I go with like, my niece and nephew, who are like, five and two and a half. I'm going to be going down the water slides. I wear the sleeve and put the Moby in that, because it is water resistant up to eight feet for up to two hours, which is the same water resistance as Omnipod. There's a lot of people in Moby land who are like, you know, it's not waterproof, so you shouldn't do it, and this that the other it's water resistant. I'm not swimming lap, so I'm not as worried about that. But I have also, in this process of being one of the first 5000 in the US to get it. Have talked with their tech support, and I have answered, I have done some troubleshooting questions with them on their training modules and other things like that. And so as a part of that, in talking with their tech people, the tech people are shocked that people are not just wearing it 24/7 in the shower, in the, you know, in the pool and that type of thing that some people are still hesitant about that water resistance rating. And I just think that's the difference is if, if an Omnipod messes up, you just put on a new pod. If your Moby water resistance messes up, you don't know, waiting for a replacement, yeah, and that's the difference, right? Yeah, then

Scott Benner 54:10
that could scare people away. You said a couple moments ago about like you had a feeling that you needed to keep the phone, like, very close. But does the phone? Is the algorithm not on the phone the

Speaker 1 54:21
pump and my CGM talk to each other, and they work regardless. The app on my phone is my visibility into what the pump is doing, and then it's also my place to go in and enter in carbs, you know, shift into exercise mode and other things like that. Which exercise mode. I have a whole different profile for because just shifting into exercise modes with the same insulin correction factor does nothing, because it'll give you corrections and then you wind up plummeting. I also have a tendency to I like the sleep mode for their algorithm, and pretty much run sleep mode 24/7, so. Because I've dialed in my basal and I've dialed in my carb ratios. So that way, if I if I know if I go shopping, it doesn't matter if it's clothes or groceries or whatever, I drop like a rock. Okay, there is no adrenaline, there's no enjoyment for me, and I drop like a rock with that. So I know that, and so I make sure that I don't get a Bolus, and I want to make sure that I run a little bit higher before heading into that. And if I was running the normal control, IQ versus the sleep mode, it does auto Bolus is when it predicts you're going to go over, like 170 so I tend to go for sleep mode. But just because I don't want to have to pay attention to the auto Bolus is before I say doing life.

Scott Benner 55:45
So if I took your phone and threw it out the window, you couldn't Bolus, right? You couldn't see what was going on.

Speaker 1 55:53
I cannot see I did go ahead. There's a one button on the Moby, and you can use it to snooze alarms, which is really annoying that you can't actually clear alarms on it. Just snooze it. You have to clear it from the app, and that's one of the things I talked to them about their training module. Because for the first 24 hours, I thought I was going to throw the Moby off a bridge because it kept buzzing and I kept clearing it on the pump. But you actually have to, you have to swipe left on the app to clear it, so that it won't snooze and go off again another two minutes. But I can, I programmed it so that if I hold it down, I can micro dose. And basically you can decide, like every time I hold it down, that is equivalent to point one units, or point oh, five units, or point two, five units, whatever you want it to be. And you hold it down, and you do that multiple times, and then it mimics it back to you to confirm what the dosage is, and then it'll give it to you, but that's you just giving the insulin, versus actually entering in like, Hey, this is how many carbs I'm eating and and now I can see what my blood sugar is, and this is what the algorithm is predicting. So you're missing that point without the app, right?

Scott Benner 57:01
But the algorithm is still running, yes, but it can't, but it doesn't know that you had carbs if you had carbs, right? So you can, like, test with a meter, like, so if you left your house forgot your phone, you could test with a meter if you had one, and then Bolus for food based on the if you had the button, program to do something, right?

Speaker 1 57:18
Some people choose not to program that button. I don't know why you wouldn't, but I did that as a part of the setup. Okay, it's a it's an option in your setup.

Scott Benner 57:27
Well, maybe for kids, maybe people don't want to, yeah, have them like being able to just be like, hey, insulin. Insulin,

Speaker 1 57:31
exactly. Yeah, interesting. So you like it? Yes, I do like the size makes the biggest difference in the world. And I know that sound it, it sounds minimal to a lot of people, but when it's literally half the size, and I go from everyone seeing it and crazy people asking me if I have a pager still, that type of thing, to where people don't even notice it, it's a big difference. And for me to be able to perform on stage without necessarily like I don't have any issue with my CGM being seen. I don't have any issue with my pump being seen. I talk to people about it all the time. When you're on stage and it's, you know, something said in the 1800s it might pull them out a bit.

Scott Benner 58:13
Yeah, yeah. So it's nice to be able to hide it if you can. Yeah, yeah. I listen, Arden's been wearing an omnipot since she was four, and I still, like, get stuck on the idea of, like, how do you sleep with the tubing? Like, and I'm sure, obviously, it's very doable, because people do it constantly. It's interesting how, like, whatever you're accustomed to the other normal, yeah, and the other stuff seems like crazy, you know, right?

Speaker 1 58:37
Well, with the five inch tubing, I do generally wear it in a sleeve. I did play around with the five inch tubing on my stomach some and, like, if I was going to go to the bathroom, I would just clip it to the bottom of my T shirt, and then it would stay in place. You can also the Moby is so much lighter that if it dangles from it, it does not pull. Oh, okay, and it's not not a deal. It's not heavy, like the previous like the tandem x2 if, if that came unhooked and dropped, sometimes it could pull my sight off because the weight of it pulling and falling. But with the Moby, that does not, that's never right. Problem.

Scott Benner 59:13
Awesome. It holds 200 units. Is that in a cartridge? Or do you have to fill something?

Speaker 1 59:17
You feel it, you can actually see it on the side. This is better than the x2 and that is kind of an all in one thing, the way that they have you filling it. The downside is that it's very visible. So a lot of people are seeing all the bubbles that happen in every pump when the insulin warms up, and then they are they're worried about clearing bubbles, which is totally valid, but you had that same concern with the other pumps, and you just didn't have the visibility into it, yeah. So I make sure that when I wear it, I wear it where the tubing points down, so that the air bubbles are at the top of the cartridge, so that the air bubbles are not getting pushed through my tubing. Does that happen though the air bubbles come through they can, if you wear it the other direction, because the air bubbles float to the top, and so then they can come up. But that's what happens. Than any other pump that they just don't see the pump. Yeah?

Scott Benner 1:00:02
I mean, that's not an omnipot thing. So that again, like, that's the thing I've never had to deal with, yeah, like, priming, tubing and stuff like that. Like, I don't know about that. Okay, awesome. Well, I appreciate you sharing that with me. Thank you. Absolutely. What have we not talked about that you wanted to? I think that's

Speaker 1 1:00:18
pretty much it. I mean, a lot of it, my journey has been insisting that the doctors would have to find a way to make it work, and then me doing the research to say, No, this is possible. Or me choosing like, instead of just doing the four shots a day, I'm going to go to eight shots a day, so that I have that flexibility. And me choosing flexibility over what they felt was safe predictability. But for me, that safe, predictable, every day is the same, felt like a slow death, like I I like to have my days be different, and I like to be able to decide to to go dance or go Kayak or, you know, whatever, do what I want when I want, as opposed to being locked in. And there are doctors who get that, and there are doctors who, when you push back, think you're being non compliant. Well,

Scott Benner 1:01:10
it's a it's a space on their form. They know how to and how to fill that out. She's not listening to me, right? I told her that story that I tell everybody, and she didn't like it. Yeah, have you experimented with different eating styles throughout the years?

Speaker 1 1:01:26
Not really, to be honest, I am, like, ever since I was a child. I am meat driven. Like, what do you want to eat for dinner? If we go out, it's always, what meat do I want? And then the sides I don't really care about that didn't really drive my choice ever so that is what it is. That's the way I've always eaten. Since dosing insulin and all of that, I have tended to eat my vegetables first, and then my meats and then my carbs come at the end. I just stumbled upon that. I know that that does slow the absorption of that carbs and keeps to it minimizes the spike. I did not do that purposely. It's something that that's how I already ate, and it happened to be that it minimizes a spike.

Scott Benner 1:02:16
Interesting, yeah, you tripped on listen to your

Speaker 1 1:02:19
glucose goddess. And I was like, Oh, I already do that, and that's just the way that I eat, yeah?

Scott Benner 1:02:22
Not on purpose, not because someone told you, just dumb luck. That great.

Speaker 1 1:02:27
Yeah, I just felt it's nice when something actually works out on its own.

Scott Benner 1:02:34
Every once in a while, I like to just get lucky, if you don't mind, that's right, I have one, like, final question for you, do you think that the age you were diagnosed at helped or hurt? Like, what did your parents do that thing where they were like, she's an adult, or were they still very involved? Oh,

Speaker 1 1:02:49
yeah, my parents were very like, they were terrified and they were no help, is really the bottom line. Well, it didn't help that there's a lady my mom knows who two of her three kids were type ones, but they were like, they were young, and one was going through puberty, and, like, literally, the mom was sleeping in her bedroom trying to keep her alive. And so my mom was hearing all these horror stories. And then I'm like, in Texas, and I'm like, Yeah, I'm going to get my own apartment. You can't live by yourself. And I'm like, No, I'm getting my own apartment. Like, that's what I'm doing. Like, it's not, I'm not changing everything. Now, don't get me wrong, like, I make sure my blood sugar is fine. I'm going to get my own apartment. And so, like, I would come home and they would make something, and then I'm digging through the trash for the boxes to have a clue about carb counting and that type of thing. And I've been back in Jacksonville near my parents for like, 12 years, and it's really only in the last like four years, so four years out of 26 that they are consistently recognizing that we should keep the carb counts out for Stephanie.

Scott Benner 1:03:57
Okay, they're starting to figure it out now, yeah, that's the fifth coming along. Yeah, you never know. By the time they're 150 they might really have right?

Speaker 1 1:04:06
Yeah, no, but it definitely it was mine. I was the one who had diabetes. I was the one who had to deal with it, and I did. Now, it's also like, I feel like within my family dynamics, it's like, oh, you know, we don't really have to worry about Stephanie. She always lands on her feet. She finds a way to make it work. And so that's my and so with it, with diabetes, it was that I've been interested in dating, like some people, you know, it's like, it's your diabetes. And so you manage it however you do, and you let me know if I need to do anything. And then other people want to know all about it, and some of them want to overstep and and that's been different for me, because, like, my family has not typically been involved in my diabetes, so to have someone that I'm dating involved, it's like learning to let them be involved and then deciding, like, what are the limits to their involvement, and that type of a thing. Yeah,

Scott Benner 1:04:57
that's the thing you've been able to navigate. Okay. Yeah. Absolutely

Speaker 1 1:05:00
with my fiance. He actually, this year was his third year going to touch by type one with me at the conference, and he knew nothing of type one. And then once we started dating, he's like, Okay, so at my place, I need to stock Diet Dr Pepper, honey sticks, Skittles and Airheads, because those are what I used to treat lows, and then the Diet Dr Pepper, what I drink while my body is screaming at me to continue inhaling the kitchen. Instead, I give it diet doctor to calm it down. Yeah, shut up. I'm giving you something. It's, you think it's sugar. It's not really, I like that.

Scott Benner 1:05:36
You're just like, that's good enough. I'll marry you. Finally, somebody, somebody figured it out. So it's

Speaker 1 1:05:41
been, it's been really good. And I get the beginning, he's like, can you eat that? And I would, I'd like, look at him, like, I can eat whatever I want. I just have to plan for it, and I have to dose for it, as long as it's not poison. I'm good, you know. And so, like, for the first year of dating, he'd catch himself, and then there'd be times we'd be out to eat, and so, and I would ask, because someone's like, not sure if they're giving me the coke or the Coke Zero. And I'm like, yeah, no, I need you to be sure it's a Coke Zero. So I'm a diabetic and, you know, and then, like, then, because I said something about being diabetic, when I go to order my food, the Oh, so helpful wait staff decides to tell me whether I should or shouldn't have something. And then, but it's been nice that my fancy is like, no, she can eat anything, you know. So it's nice that I don't always have to be the one stepping in to advocate. So it's been really nice to have someone else who's quote, unquote, in that fight, right?

Scott Benner 1:06:29
I'm not going to waste the insulin or my carbs on regular Dr Pepper.

Speaker 1 1:06:33
That's all No, it's not worth it to me. Yeah. Now there are some things that are worth it that is not one that's worth it for me,

Scott Benner 1:06:39
right? No, no. It makes a lot of sense. Well, Stephanie, I really appreciate you doing this. You are one of the few people that I've interviewed that I've met in person, so that was interesting for me. Normally, I just, I can't even picture the person I'm talking to, but today I could. So this is kind of fun. Thank you. That was good. Yeah, yeah. I appreciate this. Hold on one second for me. Okay, okay. A huge thank you to one of today's sponsors, gevok, glucagon. Find out more about G vo hypo pen at G VOQ, glucagon.com. Forward slash juice box. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com forward slash juice box, a huge thanks to a long time sponsor, ever since 365 learn more and get started today at ever since cgm.com/juice box, Arden has been getting her diabetes supplies from us med for three years. You can as well us med.com/juice, box, or call, 888-721-1514, my thanks to us, med, for sponsoring this episode and for being long time sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox Podcast com to us, med, and all the sponsors. Are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 I want to thank you so much for listening and remind you please subscribe and follow to the podcast wherever you're listening right now, if it's YouTube, Apple podcast, Spotify, or any other audio app, go hit follow or subscribe whichever your app allows for and set up those downloads so you never miss an episode, especially an apple podcast, go into your settings and choose download all new episodes. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast? You want somebody to edit it? You want rob you?

#1385 Estate Sale

Katy, living with T1D since age 11, shares her journey through inadequate early care, insurance struggles, GLP medication challenges, and managing life with two kids, including one with autism.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Welcome back, friends to another episode of The Juicebox podcast.

Katie has type one diabetes and a couple of kids got a bunch of other stuff going on. She was diagnosed when she was 11 years old. But the reason she came on the show, it changed because she lost her insurance. You'll see what I'm talking about as you listen 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. Are you an adult living with type one or the caregiver of someone who is and a US resident, if you are, I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa. This is the way t 1d, exchange.org/juice, box. It should not take you more than about 10 minutes when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box.

This episode of The Juicebox podcast is brought to you by my favorite diabetes organization, touched by type one. Please take a moment to learn more about them at touched by type one.org on Facebook and Instagram. Touched by type one.org check out their many programs, their annual conference awareness campaign, their D box program, dancing for diabetes. They have a dance program for local kids, a golf night and so much more. Touched by type one.org. You're looking to help or you want to see people helping people with type one. You want touched by type one.org. This episode of The Juicebox podcast is sponsored by cozy Earth. Cozy earth.com use the offer code Juicebox at checkout to save 40% off of the clothing, towels, sheets, off of everything they have at cozy earth.com this episode of The Juicebox podcast is sponsored by the continuous glucose monitor that my daughter wears the Dexcom g7 dexcom.com/juice box. Get started today using this link, and you'll not only be doing something great for yourself. You'll be supporting the Juicebox podcast. My

Katie 2:44
name is Katie. I live in Florida. I'm 49 years old, and I've been a type one diabetes for 38 years, almost 38 years since you were 11, since I was 11 years

Scott Benner 2:54
old. Damn. Be impressed, everyone. Okay, so hold on a second. Diagnosed at 11, type one. Do you have any other auto immune issues? No,

Katie 3:02
I don't. Nothing celiac. No, my daughter does have a gluten allergy. She has not been tested for celiac, but she definitely has an allergy.

Scott Benner 3:15
How about even eczema?

Katie 3:18
I do have eczema. I did have it pretty bad as a child. I've kind of grown out of it. It's gotten a lot better. Okay,

Scott Benner 3:25
um, do you have like, bad seasonal allergies, by any chance? Not

Katie 3:30
really bad. No. Cool, but you have them? Yeah, I would say so. All right,

Scott Benner 3:34
how about in your family line, your mom, your dad, your grandmother, your grandfather, stuff like

Katie 3:38
that. No, both my parents are treated for type two. My brother is the only other one with an autoimmune disorder. He has alopecia universalis. Yeah, so he has no hair anywhere on his body.

Scott Benner 3:56
Is that that means, like universally he has is that what that's supposed to mean?

Katie 4:00
Yep, no hair anywhere his whole life. No, he got that in his 30s. He started losing his hair in his 30s. That must have been a shock. I think it was. It started coming out in perfect circles. Think it started with his mustache and his eyebrows, and then he noticed it in his hair, and then it just started falling out all over. If

Scott Benner 4:24
that happened to me, as shocking and as upset as I would be, and how much, and I have a ton of empathy for your brother, I know for certain I would make a joke to somebody and say, I think tiny aliens are landing on me at night and creating cross circles. I would, yeah, he's

Katie 4:40
the oldest, 56 I believe there's four of us all together, and I'm the youngest. He's, yeah, he's, I believe he's fairly fine with it now,

Scott Benner 4:50
yeah, that's crazy. I mean, it's not crazy. Also, it's an autoimmune issue, right? It is, yeah. So how about his kids? Do they have any autoimmune stuff?

Katie 4:59
He doesn't have any biological kids. He has two step sons. I

Scott Benner 5:03
see okay. Now I want to start here by saying, also, you have one of those names that I feel like it's trying to trick me, and I wasn't listening very closely at the beginning when you introduced yourself. So is it you say Cathy or Katie? No, it's Katie. Katie. Okay, yeah. I mean, I thought it was, but I've had people come on with your spelling, and they're like, it's Kathy. And I'm like, I it isn't

Katie 5:26
no no Katie. I've gotten on my whole life, though, okay, when Katy Perry became popular, that was when people stopped calling me Kathy. So it was way later in my life,

Scott Benner 5:36
if only she could have pulled together sooner. You know, people started getting it right for me. Yeah, she said something shocking in an interview the other day. It's so shocking that I won't mention it here, but I was like, I can't believe you said that out loud. Nevertheless, if people have heard it, they're gonna go like, Oh, I know she had something to do with the dishes and Orlando Bloom. I won't say anything else. Now, I'll have to look it up. Yeah, don't, don't, don't look too closely. Okay, what I was going to say is, I don't know how long it's been now since I started saying, like, Hey, if you know you're using a GLP medication, you have type one, you should come on the podcast. I thought I was going to get a couple of people, you know what I mean? Like, I just didn't imagine that so many people would come forward because it's off label. It's just happening over and over again. So I want to learn a little bit about your journey, but then, you know, we'll get into what you're doing now, obviously, but I appreciate you reaching out. And, you know, I hope for people listening, they're not like, oh God, every week there's somebody on using a GLP, but, like, I don't control the flow of that. Like, you know, it's sort of the same thing as, you know, if people are like, oh my, you know, this week, everybody that he had on was like, using a T slim, or everybody he has on is using like, a Dexcom or an omnipot, whatever I have the people on who reach out to be on. So, like, yeah, like, I don't control the flow of it. But let's start at the beginning for a second. You're 11. You remember your diagnosis at all? The Dexcom g7 is sponsoring this episode of The Juicebox podcast, and it features a lightning fast 30 minute warm up time that's right from the time you put on the Dexcom g7 till the time you're getting readings. 30 minutes. That's pretty great. It also has a 12 hour grace period so you can swap your sensor when it's convenient for you, all that, on top of it being small, accurate, incredibly wearable and light, these things, in my opinion, make the Dexcom g7 a no brainer. The Dexcom g7 comes with way more than just this, up to 10 people can follow you. You can use it with type one, type two, or gestational diabetes. It's covered by all sorts of insurances. And this might be the best part. It might be the best part alerts and alarms that are customizable, so that you can be alerted at the levels that make sense to you. Dexcom.com/juice, box. Links in the show notes, links at Juicebox podcast.com, to Dexcom and all the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful. If you're looking for a last minute holiday gift that doesn't feel last minute, check out cozy Earth and use my offer code to save 40% off of your entire cart that's going to be the sheets, the towels and the clothing, whatever you buy from cozy Earth com, you will save 40% by using Juicebox at checkout. That's all you have to do, is put in my code Juicebox at checkout and you'll save 40% and I'm talking about everything from dryer balls to the towels that I use to you know what I mean? They've got towels. They've got clothing that is super comfortable. I'm wearing the sweat pants right now. They're awesome. I'm gonna go out later today and use my pullover from cozy Earth also awesome. This stuff is temperate, right? It keeps you warm, but not hot. It keeps you cool, but not cold. Every way you want to be is the way cozy Earth wants you to be the sheets are a joy to sleep in. The towels, like I said, get all of your bits and your grooves and oh my goodness, the clothing, cozy earth.com. Use the offer code juice box at checkout to save 40%

Katie 9:13
I do. Yeah, I do. I remember specifically what stands out in my mind, is going to the movies, ordering M, M, S and a Coke, and getting up, I don't know how many times to go to the bathroom. My stomach hurting, and my mom saying something's not right. You shouldn't be paying this much. She said that I started wetting the bed shortly after that, and her knowing that that wasn't something I should be doing at 11 years old, she had enough knowledge of type one to know that that's probably what it was. She bought the little sticks that you had to pee on, and mine turned really dark, so she made everybody in the house pee on one nobody else's did. And except for hers, was a little bit darker than everybody else's, which, of course, she found was because she was on her way the developing type two. She got me into the pediatrician pretty quickly. They did the glucose test. They had me drink the nasty, you know, drink, and tested my blood sugar one time, probably a half an hour later, and immediately told her that they needed, I needed to get to the hospital right away. We lived in Washington State at the time, and we lived across the Puget Sound and needed to take a ferry to Seattle's Children's Hospital. So they told her that we needed to be on the next ferry over. So we went home, packed a bag, and we're on the next ferry. She called my dad, told him to come home from work. I remember asking her if I was going to die, and she told me she didn't know. She's like, I don't think so, but you I don't know. Can I

Scott Benner 11:01
say something to any parent listening? If your child says, Am I gonna die? You go, No, of course not.

Katie 11:09
I don't remember feeling like, Oh, wow. This is awful for me. I just was like, wow. I'm getting a lot of attention. You know,

Scott Benner 11:17
I'm still laughing about your cop saying, No,

Katie 11:20
I don't know. So I, I was in a room with four other girls, and, you know, gave me insulin. They gave me a sponge to practice on with saline and a sliding scale and all the things, and I started learning how to give myself shots.

Unknown Speaker 11:37
Is this 1986

Katie 11:39
1986 and they told my parents from the very beginning, this is her disease. She needs to learn everything about it. And I think I probably got a shot from someone else, maybe once. But other than that, I had to

Scott Benner 11:56
do it all describe using the sliding scale to me if my

Katie 12:00
blood sugar was in a certain range, I took this much insulin, and I was on regular and NPH, I can't remember exactly how much, but it was so many units. If I was between, you know, like 80 and 150 you do a

Scott Benner 12:17
test, and if you depending on where you were you'd use a certain amount of insulin. How often every day did you do that?

Katie 12:24
I tested before each meal? No, I didn't. I don't think I tested before lunch. I think it was only in the morning and then the evening. Okay? And that was it. My

Scott Benner 12:37
point is, is that phrase, this is their disease. They have to understand everything about it is a is a phrase that comes from a time when what you need to know was you tested twice a day, then you looked at the piece of paper, and then you gave yourself a shot, yeah. And somehow we've carried that forward. Now there's all this information and faster acting insolence and different ideas. And there are still some people who will look at an 11 year old and go, this is on you. And I'm like, wow, yeah, yeah, different world, you know what? I mean, yeah, it's easier in the long run because of the technology, but in the short term, there's a lot more to learn.

Katie 13:09
Oh, yeah, yeah, okay, and there was a no sugar. I mean, I wasn't allowed any sugar. No sugar allowed.

Scott Benner 13:16
Oh, fun. How long did that last? I would

Katie 13:19
say probably into my 20s. Oh, so

Scott Benner 13:21
you were very low carb. No,

Katie 13:24
I wouldn't call it low carb. Oh, so you definitely had, oh, yeah,

Scott Benner 13:28
yeah, just not a lollipop,

Katie 13:29
right? Gotcha. No sugar,

Scott Benner 13:32
no pure sugar, not sugar in something else that we don't care about. So

Katie 13:36
cake, no cookies, no

Unknown Speaker 13:38
cake. You're saying nothing fun.

Katie 13:41
I can have chips, so I definitely like the salty stuff.

Scott Benner 13:44
Isn't that fascinating that they would tell you there's no sugar, but carbs are fine, right? Yeah, very strange. Well, not strange, but for how people understand things, not that also simple, sugars would spike you more drastically and probably, and this is me guessing a little bit, but on that insulin, you probably weren't seeing as much resistance. So, right? You know what I mean? Maybe that insulin had a had an easier time with a piece of bread than it would have with a, you know, with a push up pop or something like that. But all right, so fair. Fair is fair, but you live like that into your 20s. Do you go to college? No, did diabetes have anything to do with

Katie 14:18
that? No, I don't think so. Okay, I don't think so. No, I was pretty independent, and I think and my parents, really, they were big believers, and you can do whatever you want to. So we moved to Florida when I was 14, so I got a new endo when we moved here, through Jocelyn diabetes, and I actually kept that endo until about a year ago. I had the same endo from the time I was 14 years old until a year ago.

Scott Benner 14:47
Really? Yeah, hindsight tells you that was a good idea or a bad idea. I'm

Katie 14:51
gonna say bad idea. Okay, why? He literally let me skate by on being just good enough for a long, long time. So he let me make pretty much all my adjustments and my own decisions. And I wouldn't say until I really started listening to the podcast and really started understanding that the actual process of my own disease and becoming my own advocate, that I was like, I'm going to take over and adjust this myself and do things myself. How

Scott Benner 15:24
long ago did you find the podcast?

Katie 15:26
Probably about three years ago.

Scott Benner 15:28
Oh my gosh, yeah.

Katie 15:30
So I lived with an A, 1c in the sevens, the eights for most my life.

Scott Benner 15:38
Yeah. Do you have any anything going on now, because of that, I am programmed not to say complications. Can I tell you something? Yeah, Katie, I'm just going to share something here that I think constantly and I never say out loud. I'm going to say it to see if I can get rid of it. I tried, for some reason in the past, so hard not to say complications, that when I want the word, I can't even find it in my brain, I've strong arm myself into not saying it. And I don't want to do that. I want to just say, like, Do you have any complications?

Katie 16:06
I understand that, because I do the same thing in the line of work. I'm in I don't like to say disabilities, so I understand that too. I try not to say that. I don't like it, yeah, so I do the same type of thing, but because

Scott Benner 16:20
I don't want to, I very firmly don't, do not believe in scaring people into taking care of themselves. And I think that, like, if that's the next question I ask, it could come off as trying to scare the people listening. But I I'm just asking because you had an A one saying the seven and eights for a really long time, and I want to know what the impact of that was.

Katie 16:42
The only thing that I am dealing with now, and I absolutely hate it, is my is frozen shoulder. It definitely hurts all the time. I

Scott Benner 16:54
have heard it described in a way that doesn't make it sound like the tiniest bit of fun. Have you ever had them work on it in any way? No,

Katie 17:00
I have gone through physical therapy for both of them. The biggest benefit I've gotten is through a chiropractor. That's what I've benefited the most from. Okay, so, but, yeah, I do my stretches and everything, but I do see a chiropractor regularly.

Scott Benner 17:17
Okay, did they do that thing where you make a chicken wing on the side, and then you push your elbow back, and they pull on your shoulder. I haven't done that. How about how about the one where they you bend your fist up towards your shoulder, and then they grab your elbow and pull it back.

Katie 17:32
That sounds horrible. I gotta just tell you

Scott Benner 17:34
I have and I'm not alone, because I see the views on the YouTube channels. But Scottie loves to watch somebody get adjusted by a chiropractor on the I do too. Yeah, I do too. It's funny because never to the point where I'm like, I'm gonna go, like, I'm gonna go hunt one. It's just there's something about it that I'm just like, Oh, I wonder what that is like, the one now that I in my wildest dreams, I can't imagine is good for you. They put the victim on a table, on their back, and then pull their head up straight. Have you seen that?

Katie 18:05
Yeah, yeah. I look at almost like they're gonna pop their head off. Yeah,

Scott Benner 18:10
yeah. It's so rudimentary, they'll like, wrap a towel around their neck, grab the towel and, like, yank up on your and as I see it, I have two distinct thoughts. That does not look safe and, oh, I would like to try that. I know that's ridiculous, but anyway, yeah, but your chiropractor helps you. You go to adjustment. It helps your shoulder. Yeah. So my next question is, is, did you go to therapy before or after you found the podcast?

Katie 18:35
That's a good question.

Scott Benner 18:36
You know? Why I'm asking I'm wondering if lower, more stable blood sugars. Like, I don't know if the frozen shoulder is something that's now happened and it's there, and you can't, I think it is, and you can't really change it much, because they break away the because that whole part of that therapy is, like, they move your arm around a lot, right to just kind of break, break it free. And it's very painful, from what I understand. I

Katie 18:58
think I started going probably before my mom had a frozen shoulder, and so I knew that's what it was. And that happened probably five years ago. The first one okay, and it resolved, and then the second one started. And every time I've gone they've said, Well, what did you do to injure it? And I've said, nothing. I didn't do anything. I'm a type one diabetic. I kind of, it's par for the course. I knew this was probably going to happen to me. Yeah, it's a current issue. It is with one of them, my right side, right now. Okay, yeah, which is kind of brings up another thing is, you know, going to the doctor, if you go to a just a general practice doctor or a new doctor at my age with my gray hair. I don't know if you remember, we just met on Saturday. Of course, I don't. And they see me at my age and I say, I'm a type one diabetic, they kind of look at me like, Are you sure you know? Like they don't believe you if somebody at my age or your type one, are you sure you're. Type one, and they look at my chart again. Oh yeah, I guess you are. It's like, well, what? It's kind of they don't see us often. It's like, we grow up, you know? And I'm a type one, and I have been since I was 11. I know what I'm talking about. So this frozen shoulder, when I say it's this way because I didn't injure it. It just is something that has happened to me.

Scott Benner 20:24
I've had elevated blood sugars for 30 years, right? Yeah, I don't know.

Katie 20:29
They just a lot of times, don't quite get what I'm trying to say,

Scott Benner 20:32
yeah. And so you find yourself having to re explain it all the time, all the time, yeah, should we take a left turn here and talk about your estate sale

Katie 20:42
story. Oh, sure,

Scott Benner 20:44
I love this. Yeah, this is awesome. So I don't want to interject. Just tell it from the beginning. Well,

Katie 20:49
I was pulling up to an estate sale that's really close to my house. I happened to see a woman and her husband walking out and on her jeans looked like a pager. And I thought, nobody in 2004 or 24 not 14 has a pager. And I said, that's an insulin pump, and it looks like mine. And my son was with me, and I said, that is a tea slim. And I rolled my window down, and I said, I have the same pump as you. And she grabbed it. She said, No way. She came up to my window and she said, You have type one? And I said, Yeah, I do. And I pulled mine out. I wear mine in my bra, of course. And and so we immediately started talking, and I said, Do you listen to and she finished my sentence, and she said, The Juicebox podcast. And so then we exchanged names and phone numbers and became Facebook friends, and we met for dinner about two weeks later and took that picture. And of course, while we were in that restaurant, talking and speaking the same language about diabetes and everything. There was a man in the restaurant that just let out the biggest art ever and just shocked us, and we couldn't stop giggling. And so I had to write that on the Facebook page, because I thought it was so funny that, I mean, we talk about bodily functions on that page anyway, so why not share it and and then add that picture of us? So I thought it was really funny, and I was happy to see that everybody else thought it was really funny too.

Scott Benner 22:31
Oh yeah, no, it was just terrific. I'm wondering, How frequently do you see other type ones out in the world?

Katie 22:35
It made me kind of wonder how often we have ran into each other, because we also found out her name is Laura. We also found out that we don't live very far from each other at all, and we do have friend, a friend in common. So, I mean, in Jacksonville is a pretty big city, so we must have seen each other more than you know, more than once. So it's just

Scott Benner 22:58
fascinating, because you're similarly aged. Am

Katie 23:00
I right? We are. Yeah, we're only a couple years apart, and even

Scott Benner 23:03
though you're, you're younger, you both have like, white hair. Yes,

Katie 23:07
a lot of people said we looked we look alike. I don't think we look alike, but yes, we both have gray hair. Yeah, we're, we're probably just two years apart, but

Scott Benner 23:16
you don't have like, old lady kinky gray hair. No, you have that. You can't. You have that because my wife's hair looks like yours. It has, yeah? It's like, silvery, yeah. Like, people look at it, they're like, Oh, my God. How did you accomplish that? How can I do that? And she's like, Oh, I just stopped dying my hair one day. And this is what happens,

Katie 23:32
exactly, genetics. Yeah,

Scott Benner 23:34
it's interesting. But what's more interesting is you don't see type ones out in the wild that often you see one. You speak up, because you know she's got your pump. And the two of you listen to this podcast. But when you said, Hey, do you listen to she knew what you were saying and completed the sentence? She did? You have to everyone listening for a second. Has to put yourself in my shoes when I hear that story, because I'm like, What the hell it's one thing to know the podcast is popular and out in the world and everything, but you really do limit the percentage of chance that two of you are gonna know what it is and not just know what it is, but have it so top of mind that if somebody says, Hey, do you listen? And while diabetes is in your head, you're like, Oh my God, they're gonna say Juicebox podcast. Like, that's crazy to me. Yeah, yeah, yeah. I really appreciated you sharing that, and then you came to touch by type one last week I

Katie 24:25
did, and I went the the previous year as well, and I did just get the notification of when it's going to be the year after. So I'm pretty excited to go again, and it's only a couple hours away from me, so it's easy for me to go, and that's fun. Yeah, I just

Scott Benner 24:41
saw them announce it on their social media, and I jumped on and said, Hey, I haven't unpacked my bag yet from this one like slow, the person who runs the whole thing, jumped on and she said, My bag's not unpacked yet either. A lovely event, and they do such a wonderful job putting it together. Yeah, yeah, it's really something. But, but. Was nice to meet you in person like that. That was awesome. If we met the year before, I apologize for not knowing that I saw you

Katie 25:05
last year, and I think I talked to you, but I don't know that we talked much. Okay, I think I was fairly new to the podcast then. So, okay,

Scott Benner 25:14
so then explain to me, then if you've been listening to the podcast for maybe a year or a couple of years, maybe yes, right? And you've had diabetes your whole flipping life. How do you turn on a podcast made by a guy who doesn't have diabetes, right? Fair enough. My daughter has it, and I've been, you know, helping her take care of it for a very long time and all. But like, how do you turn that on and think, like, Oh, I'm gonna listen to this. Why don't you think like, this guy couldn't possibly understand my life? Or, how do you even know you need more so many questions in there. I'm so sorry. I'm unclear. How did you know to look for something like what was forcing you to go out and look for something that's my first question. Let's

Katie 25:51
see. I think part of the reason is because I am a parent of a child with and here's the word that I said, I don't like to use, I'm going to say different ability that is 22 years old, that was diagnosed at a young age, and I learned everything I possibly could about his disability. And so I then went into the field of autism and learned everything that I could, and now try and help other kids, and he is very well equipped in his life, and so I kind of knew that I could listen to you, because I kind of did what you are doing. I does that make sense? You're

Scott Benner 26:47
out there helping people with autism, and you're not. You don't have some fancy degree or have and I don't have it, right,

Katie 26:54
right? So I taught him to advocate for himself, but I never advocated for my own self. You know what I mean. So I thought, why am I not doing that for myself? If I did, if I instilled it in him, I need to take it back for myself. You're

Scott Benner 27:11
aware then that your care is not all it could be exactly. And your whole adult like, you're married, right? You have other kids, or just one. I have two, two kids, two kids, yeah, two kids. You're married. You've had diabetes for three plus decades, almost, you know, almost four, right? You know that entire time I could be doing better for myself. Why don't you? Yeah,

Katie 27:30
I mean, I wasn't doing horrible. No, no,

Scott Benner 27:33
and I'm certainly not saying you are. I'm saying, if you thought there was sealing What stops you from reaching for it?

Katie 27:38
I don't know, maybe just the lack of self love, you know, just not just trying to take care of everybody else, maybe, which I think a lot of mothers do.

Scott Benner 27:49
Yeah, you like yourself, though. You're not saying you didn't like yourself. Oh, I do like myself. You're just saying you were directing that, that care and concern onto other people. Oh,

Katie 27:58
definitely. Okay, yeah, yeah. Yeah. Okay, so you

Scott Benner 28:01
decide, listen, I'm gonna tell you the same thing. Arden went off to college, and I said to Kelly, I'm like, I'm gonna go to a doctor and say, Hey, can you help me? Like, you know? And when I said it to the doctor, I said, Look, I got both of them off the college Damn. And have a heart attack. You know what I mean? Like, I mean something's, something's wrong with my body, you know, I knew that prior, and I would only reach for help if I was in a dire situation. It was interesting up until I just decided, like, Okay, I did the thing. I got everybody off, like, they're in reasonable shape now, like, you know, can I help myself a little bit? So that's awesome. When you're searching, what do you search for? When you decide, like, I'm gonna see if I can figure out more about this.

Katie 28:37
I went to the doctor that I had, you know, that I had for 30 years? And I said, he was kind of like your a 1c is it could be better, he had told me. And I said, Who, what pump, because I was on Medtronic for 25 years. And I said, Who has the best a 1c what patients have? What pump gives them the best a 1c I said, because I can't get it with Medtronic something's not right. I'm trying, and I keep throwing insulin at these with this CGM, and it's like, it's just not I keep gaining weight, and it's just not working. The CGM is, I'm constantly calibrating it. It's not right? It's not giving me the correct readings. And so he said, the T slim and and the g6 I think, was what I had at the time. And I said, Okay, well, I want to switch over to that. And he said, Okay. And, I mean, he pretty much do whatever I asked. So he gave it to me, or wrote the prescription, and I got it, and immediately everything started coming down. And was better. I went on Facebook and I joined the group for that T slim, and someone on there said, start listening to this podcast. And that's how I found you. And so I started listening to you, and that's when everything else started clicking into place.

Scott Benner 29:59
That's. Somebody said, you should try this podcast, yes, yeah,

Katie 30:04
yeah, okay, great. And then the glps came out, and again, I learned about those. And I said to my husband, who has type two, I said, Why don't you ask your doctor if you can get on these? And he did, and he started taking them. And so then I went to my doctor. And I said, hey, could I take these? And he said, Sure, I don't see why you can't take take them. And he wrote the prescription, and I started taking them. You

Scott Benner 30:28
were able to qualify for weight, I'm assuming. So, okay, so your husband qualified as a type two, though, right, right, right. If your BMI, I think, is over 27% you'll qualify with insurance for weight reasons. Did they give you, we go V or Z bound, or did they give you? Gave

Katie 30:44
me mongero? They did. And he, as he wrote it, he said they might not cover this on insurance because you're not a type two, but give it a try. And so I did, and they approved it, and they approved it for a year, and then they stopped approving it. Okay,

Scott Benner 31:02
we'll get to that. So you start taking it. I don't need your weight, but like, just keep your starting weight in mind, because I'm interested in how much you lost, if you lost any along the way, and everything else that happened. So when you start shooting it, is it point two, five? Yes. Is that how that wait? Is that how manjarna is? Yeah. Okay. And you do that for a month. I

Katie 31:23
did it for more than a month. I was on the starting dose for probably, oh, I did keep a diary of it. I'm sorry I didn't have it right here

Scott Benner 31:32
with how come the doctor didn't move you up and up? Were you not in Congress with him?

Katie 31:36
He told me, just let me know when you want to move up. Just send me through the My Chart thing, just send me a message. I just moved up slowly. Yeah, I want to say I was probably on it for about three months, the starting dose, and then I moved up, yeah, to the next one. So

Scott Benner 31:51
tell me, what was the, what was the initial impact when you started taking it? I'll find out what the dosing schedule is for Montana while you're doing that.

Katie 31:58
I would say it was, it was pretty quick that I needed, that it impacted how much insulin I needed. I went from about anywhere from 100 to 120 units a day to probably around 60. Let me tell you, I did not go to him or have much communication with him about dropping my basal rate, or how much my carb ratio, or any of that, I did it all on my own. I started just dropping it little by little, and then as my doses went up, I started dropping it more and more and more.

Scott Benner 32:37
Okay, so just let me clarify for people, because I was thinking of wegovy or ozempic When I said point two five, it's 2.5 milligrams, 2.5 right? Is the starting dose. It goes from 2.5 to five to 7.5 to 10 to 12.5 to 15, right? I do 12.5 right now. So you start using it your insulin needs drop in half. Yes. Do you have PCOS or no? Did you have a fair amount of weight to lose?

Katie 33:06
I would say I could stand to lose about 100 pounds.

Scott Benner 33:10
Okay, so do you think you had, like, insulin resistance, or were just using a lot of insulin because your body

Katie 33:14
mass? Yes. And I would say also insulin resistance. And I would say a big part of that was also menopause. I was hitting that at the same time.

Scott Benner 33:23
Is it helping with that? Yes, I hear stories about it helping people with perimenopause. Yeah, okay, you stay on it for three months. How much to weight did you lose the first three months?

Katie 33:33
I would say I lost an average of 10 pounds a month snap.

Scott Benner 33:36
I've got the power awesome. Did you notice at touch by type one this weekend, that at the opening ceremony, which is not really open, it's the opening talk, they ran a video from the previous year, and that I was briefly in that video, and that I look significantly different now than I did in that video. Yes. Wasn't that weird? Yeah, yeah. Because last year I thought, Oh, I look good here.

Katie 34:03
My daughter said that too. She's like, he's lost a lot of weight. Yeah, no

Scott Benner 34:06
kidding. And I had already lost a lot of weight because I showed up at that thing last year, and I was like, Look out people. It was really something like I sat there when I popped up in front of myself on that screen. I thought, Oh, I did not expect to have that reaction. I looked and I went, ooh, oh, I wasn't anywhere near where I am. Now, super interesting. Yeah, that's great. Do you have the same feeling, though, like you lose the first 10 pounds, you're like, Wow, all right, then it's 20, you're like, I look great. And then every time you lose more, you look back and go, What was I thinking? Yeah,

Katie 34:35
it's pretty exciting. Yeah, no, really is. It's hard to lose weight, you know, I do think that being diabetic, it kind of it works against you a little. I mean, it's difficult. It really is. I have had success in the past with Weight Watchers. Was helpful. I I've I've used that before, and I've done like a. Low carb diet. Those are always helpful, but then they, to me, aren't sustainable, because I end up just going, oh, forget I want bread or whatever, you know, like,

Unknown Speaker 35:10
I can't forget it.

Katie 35:11
Forget it. I'm starving myself in

Scott Benner 35:14
all the other ways that you had done this, had you ever lost 30 pounds in three months? No, no. I mean, it's not that it can't be done, but, man, it's hard. And you start, for me, I start looking at the clock. I'm like, hey, you know, like, when I went to the doctor at first about this, I was probably 51 and I was like, I don't have a whole lot of time here. And I know people think that's morbid, but you know what I mean? Like, yeah, what do I got here? Like, I mean, I'm gonna be 73 in 20 years. You think I'm gonna go out and travel the world and play pickleball on Thursdays and whatnot when I'm 70. Like, I hope so, but I can't count on that. Like, now I'm the time. I want to get to it a little faster. Now. Would have been nice if I would have started when I was 20, and never been in this position, I understand. But I also look back now and I see all the other things that the Manjaro, yeah, that juice, the good juice, we'll call it, like all the other things that I'm seeing it do for me that are well beyond just my weight, right?

Katie 36:06
You know, I know, and I feel that way too. So at the beginning, it is super exciting. You're like, I look so much better. I look back at the pictures, because now I've lost 50 pounds, a little over 50 pounds, and I'm like, I look so much better, but I also am like, I am amazed at how much better I feel and how much better I know that I am inside. You know how much my health is has improved, and how much less insulin I'm taking and how much I mean, not that that is a factor of health, you know, but for me, I need it, you know. Like you say, I need what you need, what you need, but I am taking so much more. It's better care of myself and on a whole. But now I'm running into this roadblock where my insurance is not going to cover it. I can still get it. My doctors will prescribe it. It's not that, but I now have had to take another job if I want to pay for this.

Scott Benner 37:10
So your doctor will prescribe it, but your insurance won't pay for it anymore, correct? They won't cover it. Can I ask you, though, if you still have 50 pounds to lose, why don't you just ask him for zbound Instead of Manjaro, they

Katie 37:23
won't cover a weight loss.

Scott Benner 37:24
Oh, your insurance doesn't cover that. No, shitty insurance. Yeah, it really is. Who do we blame your husband? Yeah, okay, we'll

Katie 37:33
do that. We'll do that. Yeah, because he can give it I can't,

Scott Benner 37:37
Julie, he has type two, right? Fancy man, I've seen people get a dual diagnosis, type one and insulin resistance. So

Katie 37:45
I switched endos, and I asked the new and endo for that if I could have a dual diagnosis. And he said, Absolutely not. You're not a type two, yeah. And I said, I have insulin resistance. And he said, No, you don't i? And I said, Okay, maybe I need a new new, new Endo. Let's

Scott Benner 38:06
see running for post. So also, maybe that's not a good example, but you know what I'm saying,

Katie 38:12
my new estate sale diversity, she has a different Endo, and she's also on mangero. So maybe I

Scott Benner 38:21
feel like what you need is a switch to a different office. Yeah. What is he like? Isn't that funny that a physician could look and see that you've had all this success and all this benefit from something and then be swayed by the arbitrary rules of an insurance company? You don't need this because the insurance won't cover it. What does that mean? Anything? You know, awesome. Thanks a lot. When you were talking about feeling better, I found myself thinking that before, I used to think like, I was, like, a vital person in a body that was just, like, not operating well, like, you don't even, like, I'd run up the stairs and I'd be like, Yeah, I am a person who runs up the stairs you don't even, but like, I always used to think, like, I guess, I guess, just to be clear, like, I think, oh, for a fat guy, I'm really fast, or for a person who's overweight, I'm more athletic than you would think I would be. Like, you used to look at me and you wouldn't imagine I was athletic, but I was like, stuff like that. Not like, not like, on the level of my son, but like, you know, for for a guy my age, I quick and agile and stuff like that. And I used to just think of it as, like, this is my level of proficiency with athleticism, and, you know, that kind of stuff. And now that I'm the all that weight is off of me, I realized, like, that was, like, a fraction of who I was. Yeah, it's really interesting how much I was being held back by it. And I know some people are going to listen and be like, Yeah, you were fat and it held you back from being athletic. Like, I know that seems obvious now, and it seems obvious to me, but I wasn't eating my way to that scenario. Like my body just really did not intersect with food very well, and it didn't matter what food it was like, no matter how I ate, how little, how much. What kind quality of it my body would just, like, constantly, like, I would just always be holding water weight and adding weight, and I'd get heavier and heavier and and feel achy. Oh, my God, everywhere. It didn't feel good. I was tired. Like, you know, all that stuff, I take this stuff and all the things that people have heard me talk about, like, I can absorb iron now through my food. It's a big deal. I used to have to get infusions to not pass out my knee and my my feet. I used to have plantar fasciitis. Don't have that anymore. My knee hurt. My knee doesn't hurt anymore. My back used to be super stiff. My back is not stiff anymore. I feel bad because everybody bought me this chair because my back was stiff a few years ago, and now I still have the chair and I don't have the stuff back, but I appreciate it nonetheless, like all these things that changed, and I do think a lot of them have to do with just inflammation, which is probably some sort of an immune response in my body, right? You know what I mean, and I brought it up earlier, but tell me how you feel like it may have impacted your Are you in menopause fully, or was it perimenopause?

Katie 41:03
No, I'm fully. It's menopausal. Yeah, yeah.

Scott Benner 41:07
What symptoms did that help with? I'm

Katie 41:10
not exactly sure I I think I was going through menopause. I think I was pretty much done with it. Before that all it started. I am not sure that it helped with the the weight gain exactly. I had hot flashes. I didn't have a spotting or anything like that. So I don't know that it helped too much with that. Yeah,

Scott Benner 41:37
well, in ways that you could, like see and some things I've heard from other people. First of all, losing weight is going to help, right? Because that fat impacts your hormone right? So if you get rid of some of that, you might have some better luck there with hormonal fluctuations, stuff like that. But my wife specifically said, like, the hot flashes, the night sweats, like that, stuff really alleviated. Yeah, on it. And she also has long COVID, oh, which is a thing that I'm sure some people are like, that's not real, but I've seen it. It's pretty real. When she started taking a GLP, a lot of her long COVID symptoms got much easier. That's good, yeah, very cool. And then there was this moment I forget exactly what happened, but for a moment, she a doctor asked her, not her Endo, not the person who gave her the GLP, but another doctor said to her, Hey, if you're having a different symptom, stop taking that GLP for a week. And she came home and she's like, they told me to stop taking the GLP. And I was like, Look, I'm going to tell you the same thing. I tell the internet I'm not a doctor, and this isn't advice, but I wouldn't stop taking that. If I was No, I wouldn't either, right? And she's like, No, let me just do what He said for, you know, a week. And I'm like, All right, don't listen to me, which I've been married for a long time. I was expecting that. And so she definitely doesn't listen to me about anything, and she probably shouldn't, in fairness, but she stops taking it, and, like, four or five days later, she's like, Oh crap. So many of her long COVID symptoms started coming back right away. And I was like, I told you not to stop taking that magic juice. So she's like, Well, I'm gonna, I'm gonna take it again on Saturday. I'm like, why are you waiting till Saturday? She goes, That's my day to take it. I was like, Oh my God, just take it on Wednesday. What do you mean? What do you care? She's too type A that she waited till Saturday, but she started taking again. It ramped back up in her system, and she said, all that stuff, stop. Wow, that's amazing. Pretty awesome. Like again, I think just, I think it's inflammation that it's impacting,

Katie 43:33
right? Yeah, now I only have one more dose of mongero, and then I don't have any more so

Scott Benner 43:42
tell me again you literally had to go get a a job to pay for just this stuff,

Katie 43:46
right? I I am a respite provider. I have been working part time. I'm a respite provider for military families who have children with special needs. It's kind of a hit or miss job. They just call me when they need me, and I go into their home. So it's like a home health type of job, yeah, but I have taken a full time job as a preschool teacher, and so I am doing that now trying to figure out if I'm gonna go and now pay out of pocket for mongero prescription, you know, because it costs $550 a month if I want to make, yeah,

Scott Benner 44:26
the price came down recently, but it's still like five or $600 is what I was gonna say, right, yeah. Have you tried telling the preschool just to send the money right to Eli Lilly? Maybe they'll give you a tax break or something,

Katie 44:36
or maybe I can just go work for Eli Lilly. I mean, listen,

Scott Benner 44:41
if they give you a job before they buy an ad on this podcast about manjarna, then I'm gonna be pissed. Oh, my word. Meanwhile, I don't expect that a pharma company needs to buy an ad for any of their drugs like I'm pretty sure that, you know, they gotta handle them 1000 different ways, and I don't need it or want it, but I'm only really sharing my. Experience with it, but it's been very positive. And I do want to say because it bears saying it doesn't work for everybody. Like, there are people who know do not tolerate it at all, and there are also people with type one who take it, who don't see a big benefit in their insulin needs, that that does happen sometimes, sometimes people take it and they're like, I didn't see my insulin needs change at all for you. I mean, you, you had a pretty significant I mean, would you say 120 a day to 60 a day well, and

Katie 45:28
now it's even less than that. I take about 35 a day now.

Scott Benner 45:32
So some of that need was for your body mass. Yeah, yeah. It's some of it was for other reasons. And, I mean, what are we kind of hearing from people when they come on the podcast sometimes is that maybe they have some beta cells working, but it's just kind of so I don't even know how to put this, very un technical, but like, you know, like, your insulin need is so great you're not seeing it. And then you you kind of alleviate the need a little bit through weight loss, through hormonal control that you're getting, and then all of a sudden, maybe you're getting some help from your beta your beta cells. All of a sudden. Like, who knows? For some people, I do

Katie 46:06
have some beta cells that are so that are working, right? I just had that all checked, yeah, it's

Scott Benner 46:10
my expectation. And the people who don't see a bump from it just don't have any beta cell production at all, like, like, from it. But that's me, I want to be very clear. That is literally just me guessing right out of my ass. So like, I'm I really don't know anything. I'm just talking to people and trying to put two and two together. But yeah, so you're so your insulin needs for from 120 into the 30s a day. Yeah? God, you must be happy about that, huh?

Katie 46:35
I am. And now I'm scared after death, though, because I don't know what's gonna happen. Yeah, I say I don't know what's gonna happen. What's gonna happen is I'm gonna be paying, like,

Scott Benner 46:45
here's what's gonna happen, and I'm gonna sell whatever I have to sell to get this stuff. And that's gonna be that, can't you just go to your doctor and be like, Hey, man, what do you mean? A dick for pretty much. Like, here look what happened when I take the stuff, I go from 120 units a day, to 35 units a day. When I take the stuff, I'm down, would you say 50 pounds? Yeah?

Katie 47:07
And I it's still coming off, happening, yeah, yeah.

Scott Benner 47:12
Why don't you're gonna stop me from getting this. This 50 pounds is gonna come back. I'm gonna be back to 120 units of insulin a day. And then you're gonna say to me, Oh, guess what? You qualify for this again, like, what are you being an asshole for? Like, or just go to a better doctor, I guess. But, yeah, Jesus, 600 a month. 612, 1824, 3036, that's $7,500 a year.

Katie 47:33
I know it's very depressing, it is. And the amount of money we pay in insurance is depressing. Also because, you know, I mean, we pay almost as much as our mortgage payment for the insurance that we have. Holy hell do you really when my, yeah, when my, I was gonna say, when my, when we got married, when I got married, 26 years ago, my dad told my husband, he's like, he said, make sure you are you sure you want to marry her. She's expensive. Make sure you always have good insurance.

Scott Benner 48:05
We've got other choices in the barn if you want to grab a different one, this one only eats the best Patty, just so you know, yeah, I just, I love your dad talking about you, like your cattle, by the way, that's awesome. And your husband didn't take him seriously, and he should have,

Katie 48:19
and he's still with me. He stuck around. In fairness,

Scott Benner 48:23
I once after I was married my my wife's father said to me, like we were in a big group of guys and somebody was giving me crap about something, and my father in law stepped up, and he goes, hey, hey, easy on him. He's, uh, he does good with her. I was like, Oh, God, what does that mean? I was like, this is awfully insulting to your daughter, but she is difficult. Nevertheless, I hope she'll never hear this. No. I mean, it's just, it's really upsetting to go through decades of toil, figure something out and then have somebody tell you, like, no, no. I don't think so. I don't think you can happen anymore. Are you just gonna go try the other doctor?

Katie 49:04
I don't know what to do. I've gone back and forth about it.

Scott Benner 49:08
Why would you not do that?

Katie 49:09
I should. I should, yeah, and I know who he is. I know who the doctor is. I've heard of him. Yeah,

Scott Benner 49:16
he's doctor. Your ass is gonna be skinny. Go talk to them. That's right. Yeah. Yeah. Are you telling me, is this like a doctor in a mobile home or something like that? Or no, no, okay, okay, there's not like gators out front and a sign and you're gators

Katie 49:30
everywhere out front, and that's what everybody thinks. Yeah.

Scott Benner 49:35
Are there not, isn't it just like boa constrictors and gators on the roads pretty

Katie 49:40
much. That's all you ever see on the news. Is

Scott Benner 49:43
that not true? You're like, I don't think that's true. I live here.

Katie 49:46
You know, when we moved here, my dad made us give our dog away because he said that the alligators would eat it. We moved here with a dog. We believed him.

Scott Benner 49:54
Your dad's like, I figured out how to get rid of that dog. That's

Katie 49:57
my dad. Yeah, I

Scott Benner 49:58
finally got, oh, you. Want the dog to beaten by an alligator, dude, you're like, No daddy, like, God, we're gonna have to leave it here. And where were you? Puget? Sound, where were you over there?

Katie 50:07
Yeah, we were in across the water from Seattle. Yeah, you moved

Scott Benner 50:11
as far as a human being can move, going through us, the US, yeah, man, and you've been there ever since, yeah, never left you like the Florida. No,

Katie 50:23
I don't have air. Why are you there? Well, my husband was born and raised here, so he,

Scott Benner 50:30
I don't know he's the problem. Again, you're saying, yeah, yeah, pretty much. Boys always a problem. I know I'm a huge problem. So for my wife, I know she looks at me like, if you weren't here, I feel like I'd be happier, and I and I'm like, she's probably right about that and all that. By the way, that's unspoken. She doesn't say it out loud. I just I read it in her eyes. Oh, my god, wow. When you came on, when you signed up to come on, you were signing up to tell a happy story about I found this medication. Yeah, about that,

Katie 51:00
and now it's sad. So I guess if anybody listening has any insight on making my insurance pay, or I don't know when in the world, their insurance companies are finally going to jump on board and realize or the FDA is going to approve it for us, I know that it's it's gaining popularity for type one.

Scott Benner 51:20
Yeah. I mean, I'm doing more than my fair share of trying to get the word out about it. So, yeah,

Katie 51:24
I know there's studies, but I don't know how long it takes for those studies to finally, you know, get be finished, to where it's going to be something that we all can get. I don't know how long that happens. It's disingenuous

Scott Benner 51:38
to some degree, because they've done so there's been two studies let me see if I can find them on GLP that were so successful, the FDA stopped them. I think the one was for kidneys that I'm thinking of. Hold on a second. I'm gonna, I'm gonna find this. This is me talking half out of my ass, okay, but it's something I know I've seen before. I just don't have all the details. There was, like, I think an ozempic study about that was for kidneys and Novo and semaglutide Kidney study early due to strong efficacy signals. Okay, now you can go find this story if you want, and read through it. But what I'm telling you is my takeaway was this was working so well that the FDA was like, Hey, this isn't even right to put people in a double blind study over we know this works. Start giving them the drug for it. Let's stop studying it. It doesn't need to be studied anymore, right? It's been that successful. And then there was one recently, GLP, 94% type two. These are just my Google terms. Ah, here it is. Tris appetite reduced the risk of developing type two diabetes by 94% in adults with pre diabetes and obesity or overweight. This is an article from August 2024 okay, they did a study on people with pre diabetes. It benefited 94% of the people in the study. They're not pre diabetic anymore. Wow, when a study is 94% positive, you just go, Whoa, and you don't mean you're like, my god, this is working overwhelmingly for people, if they take five seconds. This study I'm looking at, evaluated 1032 adults who had pre diabetes at randomization, and obesity or overweight for a treatment period of 176 weeks, followed by a 17 week off treatment period for 193 weeks total. The result from this surmount one phase three studies, primary analysis in 72 weeks, and all participants were published in Union medicine. It worked. Okay, yeah, right. Take 1000 people with type one diabetes, randomize it, put them on a GLP, and let's get going. Because look at this, three goddamn years to do you got to get to it here. I would imagine that the insurance companies probably aren't at the moment thrilled, because the more they can, you know, they got to keep paying for it. But I would assume too, is it? I mean, I don't know how all that works, right? But as it becomes more and more obvious it's working, the company is going to have to make more of it. It should get easier to make and cheaper to make, and hopefully that can help the pricing process a little bit. But I mean, Jesus Christ, if it's helping women with PCOS, and it's helping people with type one diabetes and type two diabetes and obesity and me and like, you know, iron. Like, why not? Like, let's go. You know what I mean,

Katie 54:34
right? And is it, it brings up all the conspiracy theories. Is it because they just want to keep us sick, you know, and all the things that people say

Scott Benner 54:43
for, I don't know who's trying to keep you sick or not, I think they just don't want to pay for stuff. That's true. Yeah, definitely true. Maybe a company that makes crappy food isn't super excited about it. I would that, I that, I have no trouble imagining that in a, in a in an office somewhere, somebody who's making, like, you know, cupcakes that are basically. Plastic, and they stay good on a shelf for 17 years. They're like saying good all these people on these GLP medications because I splurged this week. I didn't shoot my GLP on the day I was supposed to. I got bum fuzzled On the day. So last night I splurged. I had a splurge yesterday. Let me tell you what I did. I went to a local deli. I got a turkey and roast beef sandwich with provolone, and I had half of it for lunch and half of it for dinner. I was crazy. Okay, for a person taking a GLP medication that pretty much qualifies as like, oh my god, so it's got to hurt the junk food market, and some if enough people get on it, but yeah, I just want to say again, they studied over 1000 people with pre diabetes, and 94% of them benefited from it. So you're going to see fewer heart attacks, fewer strokes. You're going to see less type two diabetes. And look at all the good things it did for you so far,

Katie 55:58
right? It's impacting a lot of markets. Yeah, I

Scott Benner 56:03
don't know. I just don't, I don't want to see type ones hooking for their GLP money. You know what I mean?

Katie 56:10
I guess that's my next option. No, I

Scott Benner 56:12
wasn't saying, yeah. I'm just saying, like, people shouldn't have to go do what you're talking like, you had a job you really enjoyed, right? And you'd like to keep doing that, but now you're like, Well, maybe I'll go do this one instead, because maybe I can make more money to pay for my GLP. And I don't like knowing your like specific details, but if this thing's $600 a month, this job in this preschool, you know, I don't imagine it's a laying 6090 grand a year on your Ford. So like you're working that whole month to get the GLP and not have much left over. Is that right?

Katie 56:42
I have some, I mean, and I enjoy it. I do enjoy work

Scott Benner 56:46
at the job so, but it's a chunk of your income. Oh,

Katie 56:50
yeah, would definitely be a chunk, yeah, all right, yeah, yeah.

Scott Benner 56:54
See, that's just, I don't know. That's not right. You know, commiserate with anything else, like, as we learn more and more about it, like withholding it from people, starts to feel more and more like not giving them insulin, or not giving them their heart medication or something, right? You know, yeah, it just works too well to act like, oh, it's for the people who can afford it. Yeah, I agree, yeah, because there's plenty of people out there that couldn't just go pick up a job and shell 600 like we're we're teasing your husband for not providing but obviously, if, if you can afford to spend $600 a month on something that isn't your your base bills, you're doing okay to begin with. And so, you know, so there are plenty of people aren't doing okay to begin with. Could really use this medication? You know, I spoke yesterday. I'm actually gonna rush it out. It was so interesting. This 19 year old girl comes on the show. She's a college student. She literally, we did this from, like, her apartment at college. The interview she comes on, and she tells me about all of her problems, and it becomes obvious to me, like, as we're talking and I know you think, like, maybe you would have known this before you signed her up, but I didn't. She didn't have diabetes. She has hyper reactive or reactive hypoglycemia, or something like that, right? And I start picking through her, you know, her entire health history, and it's been bad. She's had a really terrible period since she was, like, 1314, years old, super low iron and ferritin passes out. You know, is getting B 12 injections right now because she can't stay awake. Like, all of these things are, like, wrong with her, and I'm like, what are they going to do? And there's no answer. Like, she's like, I don't know, you don't even mean, like, the doctors don't say anything. So I said to her, I'm like, you wanna do something weird? I was like, here, and I opened up a chat GPT window, and I described her to chat GPT, and then every time she told me something about herself, I entered it into it, and then asked it what it thought she should do it so remarkably, agreed with what I told her before I hit Enter, wow. I was like, here's what I think I would do if I was you. And I don't want to the episode's been out for a while, by the time somebody hears this, but I was like, she's on a proton pump, a hit burner for like, six years, I think for three, six years, it's clearly blocking like, so she's got these terrible periods. She's losing a lot of blood, and then she's taking a medication for her acid reflux that's keeping her from RE absorbing iron. I said I'd get off the PPI. You have to do it slowly. It's not as simple. You can't just, like I think, you're not supposed to just stop taking it all at once. I'd get an iron infusion. I would continue with the B 12 and infusions, digestive enzyme to your meals, to try to help your digestion, to see if we can't help clear up this probably what's pressure on your your esophageal sphincter, which is probably giving the acid, right? And I said, I'd like you to take a vacitol for your PCOS, which she also had, by the way. I said, all that. And the goddamn chat GT came back, and it was like, and it said, all the same stuff, wow. And I said to her, I'm like, I'll send this to you. Can show it to your mom. You know, I said, don't listen to me like I'm a guy on the podcast, like I'm sitting in the spare bedroom of my house right now. Just in case you're wondering, I was like, but I think you should look at all this, because your doctor's only throwing patches on your problems, right? Like he's never gonna get you to the point where you're just like, oh, I don't have reflux anymore, you know? And I even explained little things to her, like, she's like, I don't, I don't eat throughout the day. I have one big meal. I said, that's actually could be one of the reasons you have reflux. You have a big full meal, it pushes down on on that, that sphincter down there, and it kind of opens it up and allows the it allows the acid to come up through into your esophagus. I'm like, you could end up getting, like, Barrett's esophagus from that, which is pre cancerous, and, like, all this stuff. And she's on top of all that, completely exhausted. And I'm telling you right now, I'm gonna go out on a limb and say something that'll make me sound like a douche bag to somebody, but if she doesn't come on a podcast to talk to somebody about it, she's gonna live the next 30 years of her life like that, yeah, for sure. You know what. I mean, that's no good. And imagine they found all the answers for and then at the end, we're like, Ah, you don't need that, right? Just what happened to you? Oh, what are you gonna do rob a bank? I don't know. Aren't there bank Robbies in Florida all the time? Don't people ride alligators in and then rob banks, right, right, yeah, all the time, lasso them with one of those bow constrictors and you're on your

Katie 1:01:25
way right. Get away on a manatee

Scott Benner 1:01:31
like Aquaman in those old cartoons, low

Katie 1:01:33
manatee. Oh, no,

Scott Benner 1:01:35
he would have been on a big Sting Ray, right, right, yeah. Are you old? Nothing on my Aquaman reference or no, no.

Katie 1:01:42
Well, I am old, but I don't know, not that old. Is

Scott Benner 1:01:47
there anything we haven't talked about that we should have? Oh,

Katie 1:01:49
probably something pop the mind. Not really. What do you mean? Probably.

Scott Benner 1:01:54
What are you worried that we you worried we forgot something? No, I'm looking at your list. I feel like we handled it, I

Unknown Speaker 1:02:00
don't know. Struggle with my weight, type

Scott Benner 1:02:03
one for 37 years, 38 now, because it takes a lot to get on the podcast,

Katie 1:02:06
I didn't know what list you had. What list did I make? A list I have been

Scott Benner 1:02:10
living with, type one for 37 years. I've always struggled with my weight, with age and menopause came insulin resistance. I've asked my endo 35 years if I could try a GLP Med, and he very readily agreed, my blood sugars have improved, insulin needs have decreased, and weight has decreased. Okay, go. That's it. That was six months ago. Oh,

Katie 1:02:30
yeah, and now I have one shot left. Can you believe that?

Scott Benner 1:02:34
What milligram are you up to now? Well,

Katie 1:02:37
I went all the way up to 12.5 but I had, because when I moved up, I still had some left in the fridge that I saved. So if I moved up to 7.5 and I had a few left of five, then I just kept them in the fridge. And, you know, moved up, so what I have left in the fridge right now is five. So that's my very last one of the five. That sucks. It's almost like I weaned myself back down.

Scott Benner 1:03:09
Have you been gaining weight? Or has your insulin needs been going up? I have

Katie 1:03:13
not gained no, it actually, it hasn't. It's been fine, okay?

Scott Benner 1:03:17
I hope it keeps up, so we'll see. Let's be honest, it's not going to I mean, if it does, then God bless, that's wonderful. But I mean, you could run into that situation where you don't gain weight and a lot of your insulin requirements were because of your weight.

Katie 1:03:31
I hope so, and I'm not. I have no problem also going to a compounding pharmacy. I would do that too, and I think five was fine for me, okay. Is especially if I just want to maintain what I've been taking for the last month. You know,

Scott Benner 1:03:50
we're still losing weight, though, right? Very slowly,

Katie 1:03:53
just a little bit, like, maybe a pound every week, or Yeah, I found I

Scott Benner 1:03:58
stopped losing weight at this point, yeah, yeah. But, you know, I got dehydrated when I traveled this weekend. Oh, really. And I'm not, like, dehydrated, like, Oh, what was me? My kidneys hurt and I'm in trouble. But, like, I just didn't drink as much because I was traveling, yeah, yeah. And I got home, I was four pounds lighter than when I left. And I did look in the mirror and thought, oh, there is, like, more out of my midsection here. Like, my midsection is flatter, like all that stuff. But I thought the minute I start drinking regularly again, like this, these pounds are coming back, for sure. And they absolutely did. So, yeah, but I don't that's not how I'm trying to lose weight, obviously. But it was just really interesting. Like, you get on a plane Friday morning, you get down there, like, you know, by the time I get everything together, I'm supposed to go to this dinner. I go to the dinner. I don't need very much the dinner, but that's fine, like, and then next day, very busy, yeah, all day I, you know, I had to get in a car at 3am Sunday morning to leave. I was on a plane by 5am on Sunday Yeah. Got home, didn't bother weighing myself, weighed myself, like, the next day. And I was like, oh my god, I'm I was 182 it's like, the lowest I've ever been. And I was like, this is gonna this will all be the first big glass of water I have. Like, I think this is over. So what happened? Yeah, I hope it works out for you. But if it doesn't like you seem hesitant to go to that other doctor. I wasn't able to figure out why while we were talking, but I would

Katie 1:05:26
No, I think I probably will. I think the only hesitation is that I just went to the previous one. He's in a whole different practice, as in, like, we have two, well, we have more than two main hospitals here in Jacksonville, like we have the Baptist network, and then we've got, like, the University of Florida network, and we've got Memorial and so he would be in a whole new network. So I just have to be switching. That would bother you networks a little bit, because when you switch your Endo, you kind of want to switch everybody, so not only your Endo, but your general practice doctor, and your everybody else you have. Can't

Scott Benner 1:06:15
you just see the Endo, just for the GLP, I could probably and then not seeing for anything else,

I suppose. Yeah,

it feels like you're making more out of this than there is,

Unknown Speaker 1:06:28
perhaps,

Scott Benner 1:06:31
because I've been looking for a real good reason why you're saying this, and I can't find one, so, yeah, just call him and be like, Hey, you helped my friend. My doctor is a jerk. Can you help me too? And he'll be like, Yeah, sure. And that should be the end of it,

Katie 1:06:45
don't you think, probably, yeah, just go do it all right, I'll give it a try. Because

Scott Benner 1:06:50
if you don't get the ball rolling, at least, if a month from now you're like, Oh, I've gained 10 pounds, and I'm using 15 more units of insulin every day or whatever, right? Then you're going to be like, Oh, I wish I would have started this. And if a month from now, you're like, you know what? I don't even need this. GLP, then God bless you, and then keep going. But at least you had your Dexcom, you know?

Katie 1:07:08
Yeah, that's why. I'll let you know. I will put it out there on the Facebook page. Thank

Scott Benner 1:07:13
you. I appreciate that. All right, go out there and make more friends that listen to the podcast. I like that.

Katie 1:07:18
I will. All right, I'll send me your way. Thank you. Hold

Scott Benner 1:07:21
on one second for me. Okay, you can use the same continuous glucose monitor that Arden uses. All you have to do is go to dexcom.com/juicebox, and get started today. That's right. The Dexcom g7 is sponsoring this episode of The Juicebox podcast. Huge thanks to cozy Earth for sponsoring this episode of The Juicebox podcast. Cozy earth.com use the offer code Juicebox at checkout to save 40% off of your entire order. A huge thanks to touched by type one for sponsoring this episode of The Juicebox podcast. Check them out on their website, touched by type one.org or on Facebook and Instagram.

I'm still proud of what I said in that cozy Earth ad about they have dryer balls and the towels that I it was awesome. I'm really, really, really proud of myself. If you're newly diagnosed, check out the bold beginnings series. Find it at Juicebox podcast.com, up in the menu in the feature tab of the private Facebook group, or go into the audio app you're listening in right now and search for Juicebox podcast. Bold beginnings. Juicebox is one word. Juicebox podcast. Bold beginnings. This series is perfect for newly diagnosed people. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way, recording.com, you got a podcast. You want somebody to edit it. You want rob you.

#1384 Misdiagnosed and Misguided

Heather, 50, was diagnosed with T1D 18 months after an initial T2 diagnosis.

+ Click for EPISODE TRANSCRIPT

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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