Scott Benner 10/9/24 Scott Benner 10/9/24

#1326 Vibrations

Lana has two children with type 1 diabetes.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
OmniPod, Hello friends, and welcome back to another episode of The juicebox podcast,

talking to Lana today. She's the mom of two kids with type one diabetes. One of them had a seizure. The other one came close due to a dosing mistake, and the results of that are her going into what she called a tailspin. She had to take some time to address her own mental health issues, and this is her story. Please don't forget that nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. 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.

This episode of The juicebox podcast is sponsored by the Eversense CGM. Eversense is going to let you break away from some of the CGM norms you may be accustomed to. No more weekly or biweekly hassles of sensor changes. Never again will you be able to accidentally bump your sensor off. You won't have to carry around CGM supplies and worrying about your adhesive lasting. Well, that's the thing of the past. Eversense cgm.com/juicebox, US med is sponsoring this episode of The juicebox podcast, and we've been getting our diabetes supplies from us med for years. You can as well. Usmed.com/juice box or call 888-721-1514, use the link or the number. Get your free benefits check and get started today with us. Med. This show is sponsored today by the glucagon that my daughter carries, gvoke hypopen. Find out more at gvoke glucagon.com forward slash juice box. Hi.

Lana 2:36
I am Lana. I am a mom of two kids with type one diabetes for the last five years. So both kids were diagnosed when they were seven years old, and they are now 11 and 13. Yeah, my son was first and then my daughter was 14 months after

Scott Benner 2:54
that, and we live in Canada. Canada. Alright, hold on a second. They were both seven years old. Yeah, both seven, no kidding, and

Lana 3:06
diagnosed. Like, the I remember the nurse saying, like, oh, let's weigh your daughter, and we'll just kind of keep an eye on her too. And just, kind of, you know, said, like, yeah, there's a chance that she could get it too. So we'll just keep an eye on her and we'll just, we'll weigh her too. So it was always in the back of my mind. And

Scott Benner 3:23
wait a second. First of all, let me do this because of your Canadian accent. I'm not sure is it Lana or Alana? Lana. Lana LAN, I got it. And then what the hell does weighing the kids have to do with figuring out if they have diabetes? I

Lana 3:38
don't know if it was just like, kind of being a part of it, that they just like, had her weighed to and it was kind of just like, maybe keep an eye on her weight, so that if she was to drastically lose weight, it would be a red flag.

Scott Benner 3:52
Seems like a Canadian thing, but Okay, all right, do you know the last Canadian I interviewed? I brought up Bill and Ted Mackenzie, and they didn't know who it was. Oh, my God, you don't either.

Lana 4:03
Is that like the the movie, Bill intense. Wait,

Scott Benner 4:06
how come I'm so old. I'm old too. How old are you?

Lana 4:12
I am 44

Scott Benner 4:15
Okay, you've never seen a movie called strange brew with, I'm sorry, Bob and Doug, Mackenzie, but you've, have you ever seen that? No, unbelievable. Okay, I'm now asking every Canadian if they've ever seen strange, bro, it's on my Canadian question list. Oh, it's on my Canadian question list. Now you don't have to ask people, although, if you go out there and do like a survey, I would be interested in the results. So my list to watch it? Oh, I don't think you should do that, although it does still get good scores. I guess people enjoyed it. You know? Rick Moranis, right.

Lana 4:49
No, I honestly like, I don't watch TV. Lana,

Scott Benner 4:51
what part of the Canada are you from? Are you in the Yukon?

Lana 4:55
I know I have a TV. I just I don't watch TV.

Scott Benner 4:58
You have a TV? Well, that's hand. I. Yeah, wait, but Rick Moranis, one of your most famous Canadian comedians. You don't know him.

Lana 5:04
I've heard the name, but

Scott Benner 5:05
it doesn't like really click of Hold on a second. We'll get back to your kid in a second, both of them, but first. Celine Dion, yes or no. You know who that is. Yes. Jim Carrey, yes. Drake kind of Michael J Fox, yes. Justin Bieber, yes. Ryan Gosling, Canadian or American?

Lana 5:32
Canadian. Good

Scott Benner 5:34
Seth, Rogen, Canadian or American? Oh, I don't know. Is he Jewish? I don't know who he is. I'm stuck. Hold on a second. Okay, I'm gonna keep going. Recently deceased. Matthew Perry, star of friends. Do you know who that is? Yes. Can you name a Neil Young song?

Lana 5:51
No,

Scott Benner 5:52
interesting. The captain of the Starfleet enterprise, Canadian or not Canadian? The original. No idea what's his name. No idea did he just go to space in his 90s? Or no, for real. All right, I've got three more. Jason Priestley, yes or no, you know who that is. Yes, excellent. See, I think I'm like, stuck in the

Lana 6:16
80s, 90s, like, I know those people. All right,

Scott Benner 6:18
hold on. Let's do it this way. Then. Joshua Jackson, nope, interesting. Donald Sutherland, no, okay. Tom Green, is

Lana 6:28
that a comedian?

Scott Benner 6:30
Lana? It is. Lana sounds familiar. Do you know who he was married to for a bit? No, lispy girl from the ET movie. Who's that Drew Barrymore, good, okay, and we found something you know about, all right, this was fun. I hope you didn't feel put

Lana 6:48
on the spot. I've always been scared of, like games, like Trivial Pursuit, because, yeah, well, you

Scott Benner 6:54
should be, you don't know. And these, those people were all Canadian, really, Seth Rogen is insanely famous, okay, I'm gonna look him up too. Okay. William Shatner, yes, you know that name, yes, okay. Mike Myers, yes, but not Rick Moranis,

Lana 7:16
like the name is familiar, but I've never listened to him. Okay,

Scott Benner 7:22
this was a lot of fun for me. I appreciate this very much. Okay, so we're gonna get past the part about them weighing your kids, because I don't get that exactly, but I am interested in this. So you have two children, they're a couple years apart, but both of them were diagnosed in their seven year old year. Is that right? Yeah, okay. Are there any other people in your family who have type one diabetes, extended family, even I

Lana 7:43
have a great uncle that my dad says, they think that he had type one that

Scott Benner 7:50
was a long time ago, though, right? A long time ago, a couple generations. Okay, how about other autoimmune issues?

Lana 7:56
So I have thyroid, hypothyroid, and my husband has vitiligo. Oh, there are two autoimmune things,

Scott Benner 8:07
the devil's brew, a father and a mother both with an autoimmune issue. Yeah, you only have two kids, right? Yeah, did you mean to have more or two? Was your number two was our number Okay, son was diagnosed first. Yeah, let's go through that. How did you notice he had something was amiss? So

Lana 8:26
it was October 1, and the summer before that, we had, you know, been doing lots of camping. And so we had, in our graduate some cases of water bottles from our camping trips. And so I think probably, like, the month before October, I kept, like, going to his room and seeing that he'd been drinking water bottles. So he would just be, yeah, he was drinking getting up in the night. Occasionally I would hear him in the middle of the night going to the bathroom. Yeah, it was just, I am a nurse, and it just kind of always was in the back of my mind. You know, once I just saw a few things, it just put it together for you, yeah, thinking diabetes, yeah. So I told you to my husband, and he was like, Oh, you're crazy. You're just, I tend to worry a lot. And, you know, he said, I'm crazy. So decided, like, I'm not crazy. I'm just, I'm going to ask the doctor. So we, I made a doctor's appointment and said, I'm probably crazy, but I'm worried he has diabetes. Luckily, the family doctor was amazing, and, you know, just checked him, right there. She's like, Oh, let's just check him. So she did a finger poke, and he was 30, so then she's like, Oh, that must be a mistake. Let's do it again. So then she redid it, and it was still high, and then

Scott Benner 9:47
crazy,

Lana 9:50
check for keto, and then sent us off to to emerge. I

Scott Benner 9:54
am not allowed to, even in a joking manner, refer to my wife as crazy. I. It's one of our rules that we've never written down. But I know for goddamn sure is a rule, and

Lana 10:05
I'm probably imagining like he did probably say it, but

Scott Benner 10:09
yeah, I'm not allowed to say it. If I say it, can I just say, what happens? What? She goes crazy, and then she yells at me, yeah. I would, if I was her, remain very calm, so as to not give the illusion that perhaps I am crazy. Do you know what I mean? But no, she leans into it. Well, that sucks, so they sent you off to the hospital. Now are you in one of those, hold on, let me get my Canadian mouth together. Are you in one of those provinces where they give you NPH and regular or they give you modern insulin? If you take insulin or so faunal ureas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G voc, hypo pen. My daughter carries G VO, hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that. I trust low blood sugar emergencies can happen unexpectedly, and they demand quick action. Luckily, jivo kypopen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store jivo kypopen and how to use it. They need to know how to use jivo kypopen before an emergency situation happens. Learn more about why gevok hypopin 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 have a tumor in Your pancreas called an insulinoma. Visit gvoke, glucagon.com/risk, for safety information. I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now, because that's how long we've been using us Med, usmed.com/ usmed.com/juice, box, or call 888-721-1514, US med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for OmniPod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys, they have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping us med carries everything from insulin pumps and Diabetes testing supplies to the latest CGMS, like the libre three and Dexcom g7 they accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with a better Business Bureau at usmed.com/juicebox, or just call them at 888-721-1514, 87211514, get started right now, and you'll be getting your supplies the same way we do.

Lana 13:28
We started on NPH, so, yeah, I remember, like, obviously in the doctor's office when she told me that I was like, you know, trying not to cry with the kids there, but almost on the verge of crying. And then, yeah, called my husband, told him he's got diabetes. Meet me at the hospital. And so then when we were at the hospital, did blood work and all the stuff, and he wasn't in DKA. And then when we saw the endocrinologist, they said, you know, you've got a choice. There's two choices we can do. We can do this type of insulin, kind of MDI, route, or we can do this type of insulin NPH. We would do the NPH if there's no one at lunchtime to give insulin for the time I was working and we kind of just thought, Okay, well, we'll try that route. Yeah, Lana,

Scott Benner 14:17
Isn't it fantastic that the one thing that consistently gets said to me from Canadians is that that entire NPH thing in Canada has to do with giving insulin at lunchtime at school. It's like somehow become a rule across an entire country. If there's no one there to give them an injection on their own, then they get mph, fantastic.

Lana 14:38
And like, we don't have nurses like there's no one else that would give it if the parents can't. So

Scott Benner 14:43
if I said to you in that moment when your son was diagnosed, hey, listen, we'll give you mph if there's nobody at the school to give an injection. Or, you know, you can do this much more modern way that will lead to significantly better health outcomes, and your kid will have. To teach themselves how to give them give themselves a shot, or something like that. Like, if it was couched you that way, do you think you would have paused, like, hey, I can give you this insulin technology from 50 years ago, or you can have this modern stuff? Which would you like? Because, yeah, I

Lana 15:14
would have chosen the modern, yeah, it's so

Scott Benner 15:16
it's like they predispose people to choose the Oh, like they set up a false narrative. There's no nurse there, so you can't use this other insulin. But that's not true at all, because plenty of kids give themselves insulin all day long without a nurse, right? Yeah, yeah. I don't know. I don't it's a one of the things I don't like about Canada. It

Lana 15:37
only lasted maybe two months, and then I was just like, I'm not liking this. I want to try something different. And so, yeah, then we got a prescription, and it was just, you know, I'm gonna just make it work that, you know, I'll be there at lunchtime. So things got a bit better once we switched. And eventually he started giving it himself. And so, yeah,

Scott Benner 16:03
is that what you did? You went to lunch, to school every day. Yeah, for quite a while it was at a great distance. How were you able to do that?

Lana 16:11
Um, no, we just, we lived right by the school. But based on, like, the whole experience, I was, like, super anxious and stressed, so I wasn't able to work for quite a while. So it was probably six months before I went back to work after he was diagnosed

Scott Benner 16:27
too. Okay, so you just kind of slipped on your penguin shoes, skied down the hill, gave the insulin, and then went back home to cry in a corner. What was your situation like? Like,

Lana 16:36
I remember before we got Dexcom, there was moments that I was like, sitting outside of his school crying, just worrying, thinking, What's his number, and my job was like a half an hour away, so it just didn't seem feasible that I could drive a half an hour away and not be close to him when the school didn't have much support to be able to help him. So yeah, it just always made it my thing that I was just near the school for that first little while,

Scott Benner 17:04
Lana, did you have any signs of instability prior to the diabetes diagnosis? I just want to know. I'm not making fun of you, because I've heard this story like 1000 times from people, but my point is, is that, prior to this happening, would you have been a person standing outside of a building crying or worried even, maybe, maybe, okay, yeah, I

Lana 17:23
definitely had anxiety beforehand, and, like, just ramped it up emotionally. I can get just dysregulated. I cry easily. And, yeah, when it came to diabetes, it was pretty stressful. Lana,

Scott Benner 17:34
I cry pretty easily too, but it's usually not about, like, stressful stuff. Yeah, yeah, I watch TV and cry. Well, you don't know what TV is, but I when I watch TV, by the way, you might have less stress if you watch television once in a while. There's a fantastic show on max right now that you should try. I don't know the name of it, but I'm really enjoying it. It's either called the realm or the rain. I'm not sure which one.

Lana 17:57
I need more TV time to relax better. You had a

Scott Benner 18:01
veg a little bit. Have you tried the weed? By any chance? Tried the what weed? Have you smoked weed to relax, or done something like that? Have you gone to like, lengths to try to, like, chill out? No, does anything help you relax?

Lana 18:12
Like, I don't. Later on in the story, I can talk more about like, I had, like, just like, more trauma, like PTSD and so then, since then, I've learned to do things like exercising and walking and eat better and just taking better care of myself, and it has helped that I'm not quite as stressed out as I used to be beautiful. All right. Well,

Scott Benner 18:33
we'll definitely get to it. Obviously, one of the things that relaxes you isn't telling a story out of order. So let's keep going. So this goes on for a bit, and then now your daughter's diagnosed. Does it ramp up from there? Had you found any comfort prior to the second diagnosis, or were you still like struggling at that point? No,

Lana 18:53
I was, I was doing okay. You know it was. Yeah, 14 months afterwards, she was diagnosed, and things were pretty good. I was able to get back to work a little bit. I'd started a day home also, just because I still did want to be closer to home, make some more money, but not be nursing all the time. So yeah, I'd started a day home. And then in September, and then December, she was diagnosed. Hey,

Scott Benner 19:20
Lana, you just used the Canadian term, I don't know, day home,

Lana 19:26
like, childcare, childcare. Okay, that's in my house that I was looking after while they were at school.

Scott Benner 19:30
I was kind of thinking that's what you meant. But I wasn't certain if it was like a nursing thing or not. So I just wanted to check okay, so you just get settled into this little rhythm, and then she gets diagnosed. Yeah,

Lana 19:41
oh, gosh. And with her, it was like, I'd finger poked her a few times, and everything was fine. And then just yeah, one night, she drank some milk before bed and said, Mom, I'm still thirsty. And so just knew at that point she was really scared. Narrative needles. And so I just kind of let it be and gave her some more water to drink, and then she went back to bed. And then, like, two hours later, I'm like, Okay, I'm gonna finger poker now that she's sleeping. And, yeah, that's when we found out, and I'm sorry, in the middle of the night. And then the next morning called, like, I called the endocrinologist in the middle of the night, and he had me check her for ketones while she was sleeping. I just kind of quickly did a urine check and she was okay. So he said, don't need to come to emerge now, just come to the diabetes clinic in the morning. How

Scott Benner 20:36
did she handle it when she woke up to the news? How did you tell her this episode of The juicebox podcast is sponsored by the only six month wear implantable CGM on the market, and it's very unique. So you go into an office, it's, I've actually seen an insertion done online, like a live one, like, well, they recorded it. The entire video is less than eight minutes long, and they're talking most of the time. The insertion took no time at all, right? So you go into the office, they insert the sensor. Now it's in there and working for six months. You go back, six months later, they pop out that one, put in another one, so two office visits a year to get really accurate and consistent CGM data. That's neither here nor there for what I'm trying to say. So this thing's under your skin, right? And you then wear a transmitter over top of it. Transmitters got this nice, gentle silicon adhesive that you change daily. So very little chance of having skin irritations. That's a plus. So you put the transmitter on it talks to your phone app, tells you your blood sugar, your alerts, your alarms, etc. But if you want to be discreet, for some reason you take the transmitter off. Just comes right off. No, like, you know, not like peeling at or having to rub off adhesive just kind of pops right off this silicon stuff, really cool, you'll say it. And now you're ready for your big day. Whatever that day is. It could be a prom or a wedding, or just a moment when you don't want something hanging on your arm, the Eversense CGM allows you to do that without wasting a sensor, because you just take the transmitter off, and then when you're ready to use it again, you pop it back on. Maybe you just want to take a shower without rocking a sensor with a bar of soap. Just remove the transmitter and put it back on when you're ready. Eversense cgm.com, dot com, slash juice box, you really should check it out.

Lana 22:27
Yeah, remember, like, I'd called my mom in the morning to say, like, could you just come that Caitlin's now diabetic too. Could you come help us? So my mom was there, and just, yeah, she woke up, and I said, you know, Caitlin, I'm so sorry. I did a finger poke in the morning, and you have diabetes too. We have to go to the hospital. And so she started crying, freaking out, and then, yeah, slowly, just got her in the car, and off we went.

Scott Benner 22:58
Now at that point, is your son using a pump or a glucose monitor by then?

Lana 23:03
Yeah, he was on Dexcom and MDI, no pump. Yes, no. MDI,

Scott Benner 23:08
now, did you get her a Dexcom immediately?

Lana 23:10
We actually got her a libre at first. Okay, just because of insurance, we ended up with a libre first, and then a couple months later, then switched to Dexcom. Dexcom.

Scott Benner 23:21
How did she accept the addition of the device? It was okay. Like, the first

Lana 23:27
few days were hard. Like, I remember that day doing blood work was, like, horrible. It took a few people to hold her down to get blood work done, and we ended up getting a psychologist appointment just to kind of help do some relaxation things with her, to get calmer with doing the needles, right? But yeah, soon after it

Scott Benner 23:49
was okay with both of them, that's excellent. Well, it sounds like they adapted pretty well. You adapted well too. Or did your anxiety just double when it was the second kid,

Lana 24:00
I think, like it was easier, like we didn't need to go through all the training again, but it was still very emotional. How

Scott Benner 24:07
about how did your husband handle it?

Lana 24:09
Like he's not outwardly emotionally, like I am, so he kind of keeps things to himself a little bit more, but he's also anxious. And, yeah, we were both stressed. Wow, sure. Oh, well,

Scott Benner 24:23
that sucks. I'm sorry, but that's not really why you're here, right? You had a pretty specific reason for one to come on and talk. So let's maybe jump forward to that. One of the kids have a seizure. Both of them had it. What happened?

Lana 24:36
So my son had a seizure, and we had gone away for the weekend to like a little Airbnb cabin, and you know, it was supposed to be all relaxing and fun, and we had gone snowshoeing during the day, so had lots of exercise. And then that night, I. Probably, in hindsight, we obviously should have adjusted his long acting we should have lowered it, but we had given him his normal dose, and then we were tired, and my phone died, and my husband slept through the low alarms, so he had just kind of been coasting low for a few hours in the night, not like crazy low. It was 3.4 was the lowest. I'm gonna

Scott Benner 25:26
have to look up the conversion for that. And while you're talking, hold on a second. I will do I haven't done this in a while, but at juicebox podcast.com there's a conversion chart. Works great, a 1c and blood glucose calculator. What was the number you just said 3.4 3.4 point four, which is 61 so he was, he was coasting there for a few hours, yeah. And then finally, maybe the that new injection of basal started to ramp up a little bit, maybe all the carbs, and everything was out of a system. And then he got drugged down farther, yeah. So

Lana 25:58
it was kind of like first thing in the morning. Around eight in the morning, we were in this cabin, and so he was in a bunk bed, and I was in a loft, kind of just kind of up a few stairs, and I just heard this, like loud scream. It was like, just this really odd sound. And so I kind of jumped out of bed, and then his bunk bed was kind of right under me, and then I saw him having the seizure. So I jumped into the bunk bed and just started, kind of like screaming for my husband wake up. And it was just like I just woken up. So I was not completely aware, and I was thinking, get me juice. He must be low. Get me some juice. Just within a few seconds, I'm like, No, he doesn't need juice. He needs his biscuit me. So he needs glucagon. And so I was just screaming to my husband to find it in our suitcase, yeah. Then he got it for me, threw it up the bunk bed, and it was tricky, like, just in my panic moment, just to get the wrapper off and to 100% figure out what I was doing, but got it done, got it given, and then, yeah, it was definitely traumatic. I'm thankful my daughter didn't see it, because she was in the room, but with him being up in the bug bed, she didn't see him having the seizure.

Scott Benner 27:23
She awake? Was she aware something was happening? Yes, she just didn't visually get to see Yeah, wow. Sorry. My daughter's had a seizure. So made me upset when you were describing it, because I remember all that too. They get the stuff and the yelling and, you know, the panic and not sure how to use it, and all that stuff. Back when it happened to Arden, she was was just diagnosed. She was probably like two and a half. It was still like that old the red box, the ill Lily injection, and I didn't even remember how to do it, to be perfectly honest. You know,

Lana 27:55
it doesn't work when you're in that state of panic.

Scott Benner 28:00
Yeah. And on top of that, I went, Arden hadn't had diabetes for very long. And when they gave us the glucagon, they said, This is glucagon. It's an emergency injection for if you have a seizure, don't worry, you'll never need it. And I was like, Oh, well, we'll never need this. Oh, I think I just didn't pay attention to it, if that makes sense, yeah, how long after you crop dusted his nose. Did he come back? So

Lana 28:22
it was probably like a seizure. Maybe lasted two minutes, and then he was confused afterwards. So, like, I think I was telling my husband to call 911, and we had no cell phone reception, so that wasn't working. And then he was kind of coming out of it, and was confused. So we just, like, tried to, like, carefully get him down the ladder while he was, like, just not completely with it. Then we were just kind of like, you've got to get out of here. Like, let's just get to the hospital just to have him checked out. He threw up all over the cabin as we got him down the ladder and then tried to clean that up, you know, get us packed, and then get everyone in the car, and then we went to the hospital. Well,

Scott Benner 29:08
that's terrible when you got to the hospital. Did you find that you actually needed to be at the hospital, or was it a precaution that wasn't didn't end up being necessary, probably

Lana 29:17
didn't end up needing to be necessary, but they still did a bunch of tests just to kind of rule it out, it was actually a coincidence that the eMERGE doctor had a son with type one diabetes. So as soon as I met with this doctor, it was just like, Oh, I was thankful that he was the doctor and that he understood. And so he just said, like he was surprised with having a seizure, you know, with that number. And so he just thought it would be safer, just to rule things out, to have did a CT of his head. A few days later, we had to come back to do an EEG.

Scott Benner 29:50
I'm assuming, in the panic, it never occurred to you to like test his blood sugar to see if the CGM was accurately reading or not. Right? Yeah.

Lana 29:59
I'm pretty sure we did. I did

Scott Benner 30:01
okay. And so he was in the like, 3.4 range when you test them,

Lana 30:06
no, by then, like, it had already come back up. So, oh, I see it was probably like, right after the seizure, we did a finger poke, and by then it was like, six or something. So he was back up over.

Scott Benner 30:18
Listen, not a doctor, I can't imagine you having a seizure at 3.4 like, so I don't know. I'm not obviously, it's hard to say what would happen. Or definitely

Lana 30:27
it could have been lower than that, yeah, and we don't know that, right? Of course.

Scott Benner 30:31
How is the guilt afterwards for sleeping through the alarms or not plugging in the phone, that kind of stuff?

Lana 30:37
Definitely bad. Like, yeah, lots of guilt, you know, I didn't go back to work for a little while after that. At that point, I had been back working full time as a nurse, and so, yeah, I'd taken a little bit of time off after that, and then, you know, kind of got back to life. And then it was probably two months later that my daughter did a mistake with her pump, so she accidentally overdosed with her pump and gave instead of 12 carbs, she entered in 12 units. I think the max bolus was 10, so she got 10 units in the morning. That experience kind of put me over the edge that it was just correct and like, I didn't want mistakes to happen, and so I went on a stress leave after that happened with my daughter.

Scott Benner 31:26
So you get to two different seizures, two different ways. One's kind of like a slow drip, basically from the basal, and the other one is like a big bolus right away. So she bolus for, she's thinking, for 12 carbs, how much insulin should that have been for 12 carbs? Do

Lana 31:45
you remember? Probably would've been like four units. All

Scott Benner 31:49
right, so she got six units too many. She didn't notice. She ate her food, and then how long after the she pushed the button, did the seizure happen?

Lana 31:59
So she didn't have a seizure. It was just a a close call, so she seizure. Oh, so walk me. Walk me through what happened then, okay, so it was morning breakfast, so dropped her off at school, thinking everything was good. I was driving to work, and then all of a sudden, she called me, and she had looked at her pump, or no, oh yeah, she was on a pump by then. So she looked at her pump and realized, Mom, I've got like, eight units on board. That doesn't make sense.

Scott Benner 32:27
And so just what?

Lana 32:31
Like, what did you do? Like, how do you have eight units on board? And then I just said, Okay, I'm coming to school. So I drove back to the school, ran into the office crying, and, you know, she was drinking her third juice box at that time, and, yeah, brought her back home, and everything was okay once she'd had all of the carbs she needed. So,

Scott Benner 32:54
yeah, so she replaced the carbs, and she was fine. Like, there was, like, literally, no actual danger. Is that right? Nope, no, okay, but it threw you over the edge, as far as, like, somebody needs to be watching these kids like a hawk the whole time, kind of feeling,

Lana 33:12
yeah, it was just like, you know, I felt over, like, stressed, burnt out, you know, with working and trying to manage the two kids, it was like, mistakes are going to happen. Like, we

Scott Benner 33:24
can't do this anymore. Okay. Is that financially? Was that comfortable for you to stop working? Or no, um,

Lana 33:32
at that time, I had, like, a full time job, so I had had benefits, so I had gotten, you know, money while I was off. And at first I thought, okay, like, I just need two weeks, and then I'll be back and I'll be good. But it ended up being like, 10 months.

Scott Benner 33:47
And did that, that stretch of time, did that become more about you or more about diabetes? Does that question make sense?

Lana 33:54
Yeah, I feel like, I think it was, it was me. So, like, you know, to be off of work, I needed to go through all of the stuff of you know, getting counseling, seeing a psychologist, getting on medications for my anxiety, seeing a psychiatrist getting diagnosed with PTSD from just the seizure, mainly, right? Diabetes kind of triggered it, but I've had to work on my own mental health to be able to handle life?

Scott Benner 34:21
No, sure. I'm really grateful for you to come on and talk about it like this, by the way, because this is very you're very clear and being very honest and and I appreciate that, because I'm sure a lot of people feel this way, and maybe don't have great benefits or understanding employers, or you don't even anything in between, the ability to take care of themselves. Well, is there a way for you to help yourself, which obviously you're going to do without the kids thinking our diabetes made mom feel this way. You see what I mean. Like, like, how do you like, navigate that bit of it?

Lana 34:57
Yeah, definitely like looking back. Back, I, you know, would sometimes, like, cry thing, like, Oh. Like, if they were upset about diabetes, I would cry too. And like, say, like, oh, I, you know, diabetes is so hard. So looking back, I would try to keep myself together a little bit more so that they didn't have that feeling that it was their fault.

Scott Benner 35:22
Is that difficult to do in that time? Like to hold it in? It

Lana 35:27
was, but I think since going through lots of counseling, it's just I've learned tools and techniques to be able to help myself better.

Scott Benner 35:35
Did you do the the 12345, thing, the one thing you can see, two things you can that, that whole thing

Lana 35:43
she did that, I think, like the one cool thing she did was, EMDR,

Scott Benner 35:47
oh, a lot of people talk about that, yeah. What was that like? Yeah, you use

Lana 35:52
your eye movements, and then it rewires your brain to, you know, heal, kind of past trauma. And so you kind of go from like, what are you thinking that's negative, and you have that in your brain, and then how can you switch it to a better positive feeling? So in my brain, it was always like, safety, like the kids aren't safe, the world is unsafe. And feeling that panic whenever anything would happen with diabetes. And so doing the EMDR, eventually my brain would switch and kind of be, like, they are safe, like they've done this so many times. They know what to do to treat lows, and they're going to be okay. And then we eventually, like, sometimes just the low alarm of the Dexcom would be my trigger. And so I'm like, can we try something different? And I'm like, This is what triggers me. It's not always a thought. It's the alarm will trigger me. And so we just kind of did a simulation of like, let's pretend that they're low, and I put the alarm on for low, and then we went through the process of the EMDR,

Scott Benner 37:00
wow. So now, now the beep, beep, beep, doesn't make you like, triggered,

Lana 37:05
no, like, it's still just like, you know, okay, they're low, but it's just, I breathe. They're low. I deal with it. I don't go through that panic feeling

Scott Benner 37:15
you have two so there's no way they're both low at the same time. So you get to you get to experience it twice a day. Probably right? Just, you know, it happens to one at one time and one at another time. But they're not synced up with their diabetes. Are they? Sometimes

Lana 37:29
they are and that sometimes one's low and one's high and yeah, what's

Scott Benner 37:33
worse, a low blood sugar at two o'clock and then another one with another kid an hour later, or two at the same time?

Lana 37:39
Probably like, two, yeah, two at the same time. It's not fun.

Scott Benner 37:43
Oh my gosh. Your husband hasn't left yet. I mean, gotten lost going to the store.

Lana 37:50
No, he's still there. And you haven't

Scott Benner 37:52
gotten lost going to the store. You're like, I know what to do. They're driving to the snow and not come back. How are the kids doing with all of it, like, did they have anxiety your daughter little, right? They both

Lana 38:04
do slightly. So they've been going through counseling kind of on and off. You know, as they've needed nothing significant. I think with my son and the seizure like that, does sometimes come up that he's worried about those at the beginning, he would probably like over treat the lows. And I could just tell his mind was thinking, you know, of the seizure, yeah. But now, like, he's pretty, like, he like, he doesn't like to be high either, and so he's pretty, pretty good with not over treating. But you know, he never ignores it. So

Scott Benner 38:40
have you ever heard Arden discuss the seizure she had after her senior prom? No, I haven't. Oh, it's in her SEC she's only been on the show twice, but it's in her second episode we talk about it. Okay, yeah. So I don't know if it'll like, make you feel better or freak you out. I can't exactly tell, but yet, I'll share this one thing that she said. So I asked her, like, are you worried about this happening again? And she said, I did everything right. She's like, I look back, I've thought about it 1000 times. She's like, I think it was just the extra activity throughout the day, and probably a lot of adrenaline holding my blood sugar up throughout the day, and then all that insulin just caught up at the end. And you know, I then we ate a meal in the middle of the night. She's like, and I, even though I'd cut my insulin back on that, I knew I didn't need as much as normal. I took less. It was still too much. The thing that ended up comforting her was that she didn't do anything wrong. And she's like, so if it happened, it happened, but I got to live my life still like. That was kind of her attitude about it was really interesting to hear her talk about it, yeah. But anyway,

Lana 39:45
I remember, like, I remember crying to my doctor about being worried about making a mistake. Like that was just the big thing in my head that, you know, scared to make a mistake. Yeah,

Scott Benner 39:55
no kidding. Well, even the 12 units, 12 carbs. Thing that's not crazy to have happen. You know, you're rushing around or something, and she's probably trying to get to school and, you know, that whole thing so, but now today, how long ago was that, by the way, how long ago were you with the therapy and doing those, those different techniques? How long has it been since you did that stuff? So

Lana 40:19
I went off of my stress leave just over a year ago. Okay, and

Scott Benner 40:25
how do you feel today?

Lana 40:26
Pretty good like I feel. Yeah, definitely things are better and more Stabler, and I'm working on my own health and self care and trying to take care of myself. But I also know that if I went back to work full time, things might go downhill again.

Scott Benner 40:45
So you're just part time right now. Yeah, yeah. You have it set up so that your schedule allows you to be there during what you think of as more important times.

Lana 40:54
Um, so currently, my job is working from home, so it's actually really amazing that I can get them off to school, I'm home when they get home from school. And it's just flexible so I can see what's happening. And it's the type of job that if something does happen, it's okay for me just to tell my coworkers, sorry, diabetes emergency, I've got to go. Yeah,

Scott Benner 41:15
wow, that's great. So many people work from home now it's amazing, yeah? Like, I know it doesn't seem amazing to younger people, but it really is. It's crazy. My wife has been home every day since covid, so I don't even how long it feels like it's been three years, and she just took a different position at another company, and she's in the middle of this two week break right now, and she starts her new job on Monday, and she's gonna have to be in the office, I think, three days a week. And I was like, I was so bummed out. I was like, Oh, I'm gonna miss her. Like, I love that she's here, and like, we can see each other throughout the day and everything, and she doesn't seem as upset about leaving me as I pros

Lana 41:57
and cons, I think, like, getting out of the house, and, you know, being social, there's, there's good parts to that, too. No, for

Scott Benner 42:04
certain, yeah, for real. Wow, huh? Well, what made you want to share all this?

Lana 42:10
I think it was like you had posted something about looking for guests that had used the basquimi. Yeah, there's so much that sometimes people don't know. They don't know that it's as much of a risk as it's still like, it is a risk, and you should be prepared for it, you know. And just to remind people to, like, always have it with you, always have sugar with you. Like, even just to practice, you know, we've done that since then, but we've just, I've gotten my husband to to practice doing one that was expired. And

Scott Benner 42:45
I love the way you say it back. Squee. Me. I don't actually know how to say it. I say back. Semi, but I have no idea not the point. The point is, this is the one in the little like, put it up your nose and and squeeze it, and it like, kind of shoots a powder in your nose. Is that right? Yeah, okay. Did he describe that as being unpleasant, pleasant, not pleasant. But what was his experience with it? Or was he so out of it, he didn't really know about it? Yeah, I don't think he even remembers that happening. Yeah, the vomiting is common after the glutagon. I think,

Lana 43:14
yeah, it can be. And I think the second reason of wanting to come on was just that, like that mental health piece that in the diabetes appointments, it's usually focused on the kids, but I think there needs to be more help for the parents to be able to, kind of like, just manage their mental health and to to know that they need to take care of themselves kind of extra well when you've got all of this stress on you. Yeah,

Scott Benner 43:37
no. I mean, Arden's diabetes. I mean, I guess that part of me hope she never hears this, but Arden's diabetes, like fundamentally changed my life, and my wife's as well. My son's probably too, you know? I mean, on top of hers. I mean, once you get into a rhythm and it's a day to day thing, I don't think of it as a thing that I'm consciously aware of all the time. I mean, we've been at it for a long time now, but at the same time, I do think that I'm gonna say something kind of weird and hippy for a second, but I think the vibration that we live at is different than it would be without diabetes. Like, there's that makes sense, yeah, definitely, yeah. There's like, a raised level of awareness constantly. You know, little things, like, even just before I started recording with you, like, I I have to mute my phone to record the podcast. So I looked at Arden's blood sugar before I muted the phone. And, yeah, you know, and then there is this, like, small part, part in your head that's like, Okay, well now it's gonna be an hour before you look at it again. And so now I'm there's a little bit of me that's waiting for the table to vibrate from my phone, because it won't be because I've, I've silenced it, but my phone will vibrate if she gets low or high. And I think that just happening all the time. It's interesting, or I've noticed that she's away at school now, and you only get. So many touch points with your kids, like, when they're older, and I feel like some of the touch points that I would use on, how are you, what are you doing? What you've been working on at school, I miss you. Get used on, hey, don't forget to change your pump. Or, you know, can you tell me how much insulin you have left if we have to order more. Like, I feel like I some of my touch points get wasted on stuff like that. Sometimes that makes sense. Definitely.

Lana 45:26
Like, I try to make it when they get home from school that I'll ask them something non diabetes before I talk about diabetes. But it's hard. Just I've got my to do list of things I need to check. And yeah, sometimes

Scott Benner 45:41
I stopped myself. It was a smart thing to do. Like, I didn't want her to think that I, like, just saw her, like, diabetes, or that I'd been sitting at home all day waiting to ask her if, blah, blah, blah, you know, so when she'd come home, I would definitely, I definitely switch to that just, you know, talk about anything except that, yeah, yeah. I think that's a good idea. Good for you. Jeez, anything happy happening? Share a fun story. Lana, are there polar bears, where you live, or anything cool like that? No, no. Polar bears. Have you ever seen a Mountie? Um, nope. You have a pet penguin? Anything good? No,

Lana 46:24
I don't know. I do have, like, a vision of, I want to, like, just spend more time in nature. And so that's not like there's always snow here, but I like to go camping. But I do have this thought of, like, be fun to have an igloo that you could stay in all

Scott Benner 46:41
right. Now we're getting Canadian now, yeah, how often in a year do you think I hope a bear doesn't kill me?

Lana 46:49
There's no bears where I am, where the hell Oh, what

Scott Benner 46:51
are you in? One of those cities that they have in Canada, it's

Lana 46:55
in so it's in Alberta, and it's, yeah, just it's out of the mountains. So there's, there's no bears here.

Scott Benner 47:01
Gotcha a moose? Ever walked through town or anything like that? Yeah, there would be like,

Lana 47:06
there's deer in our city. Sometimes see the deer. There's

Scott Benner 47:10
deer in my backyard. I was looking for a moose. So, yeah, Geez, it's kind of boring. Have you ever heard the the episode where I talking with a nine year old Canadian girl and I, I try to convince her that she's not even sure if there are cars in the United States or not, because she's never been there. You have your Canadian episodes. I just love Canada. I love how you guys stab each other in bars and play hockey. It's all fantastic. I think my honest to God, favorite Canadian thing that sticks out from the podcast is when the One girl said she was a can can dancer in the Yukon. If you ever heard that, or not, I love that. Yeah, this is my favorite Canadian thing that's ever happened, actually. Anyway. What have we not talked about that we should have? I don't want to. I don't want to miss anything. And we're like in the last quarter of your time. So is there other stuff like, outside of this topic that you're interested in sharing? I

Lana 48:00
feel like the stress and the mental health kind of burden, it's just like, I think it's aged me. And so, like, during covid, I'd put on 60 pounds, and I was just like, I thought I had lupus, you know, I was like, in chronic pain. And part of it, I think, was like stress eating and just living a life of stress. So it's just really important to me now to try to take care of myself. And recently, I've kind of signed up for some program that I want to prevent myself from getting type two diabetes. So that's kind of my my newest thing that I'm trying to learn about, you know, insulin resistance in myself. And I just feel like with them having type one, I owe it to them to take care of myself and prevent type two. Yeah,

Scott Benner 48:50
I knocked 50 pounds off with GLP, if you want to give that a shot, really. Yeah, I've

Lana 48:55
lost 30 so far. So good for you. That's

Scott Benner 48:58
wonderful. Yeah, I think I might have had an actual metabolic problem, so I didn't change how I ate and lost 50 pounds. But nevertheless, actually, oh yeah,

Lana 49:10
this feels good to like, feel better. And so, you know, do something if you're not finding what's try something different.

Scott Benner 49:19
Yeah. No, I can't. I can't agree with you. Enough, I had done the things and nothing happened. So I was like, alright, am I gonna try something else? This medication became, like, so popular, and I talked to a doctor about it. It's been, been a year and a month now since I started it, and just I've lost, like I said, I've lost 50 pounds, and my wife's used it as well, really changed her life. And I saw my doctor on Saturday. Me, she's taking my vital signs. And she kept, like, under her breath, going like a kid. She kept saying to me, she's like, you're like a kid, these numbers are terrific. And I was like, Yep, and like, yeah, all my aches and pains are gone. And, you know, I went down so many sizes and clothing. I went from a two. 2x t shirt to a large like, I didn't even wear a large T shirt when I was like 18. My waist size, I know ladies just have pant sizes, but my waist went from a 38 to a 32 Yeah, that's good. I'm glad you're doing it. So you do it with exercise. You changed your eating habits back to where they were prior. Probably, yeah,

Lana 50:18
I've tried changing the timing so I don't eat after supper, and then, so, yeah, a little bit of timing, and then lessening my carbs, trying to eat more protein and fiber, and, you know, just overall, trying to eat healthier. Just good ideas. Yeah, exercising,

Scott Benner 50:36
that's excellent. The not eating after a certain time once you get to a certain age, is very, I think, kind of important, to be honest, especially you don't want, like, overnight food sitting in your stomach and digesting and, you know, just a lot of reasons for to want to avoid that. So are you eating in like, a fasting window? Have you tried that? Yeah, kind

Lana 50:57
of, but I just like supper is the last time I eat and then breakfast, I'll usually kind of delay it a little bit. I used to, like, you know, have something carbs, right, first thing in the morning, where now I just try to have something more like protein and a little bit of carbs. And I would probably wait a little bit till after I exercise. Yeah,

Scott Benner 51:16
that's, it's a great idea. I mean, it's one o'clock in the afternoon here. When you and I get done, I'm gonna eat breakfast, and I've been up since eight o'clock. So, yeah, I kind of agree with the all those ideas. Actually, I think you're onto something very nice. It's excellent. And do you feel better, like, in general, like body wise, you do feel better, right? Definitely,

Lana 51:37
yeah. Like, before I would just be so achy that it would be hard to get up off the floor, just all of the weight on my joints and everything, like I just, you know, I was tired all the time. I was crankier, I was more anxious. So taking care of myself has been really important. We've

Scott Benner 51:57
noticed all the same stuff, like we were getting to the point now, like we'd watch TV for an hour. I know TV is this thing. It's a box in your room Atlanta, and like, a picture comes on a sound, but like, so we were we do that and stand up to walk out of the room, and one of us would like, limp out of the room, or, like, your back, your back wouldn't straighten all the way up. And you're like, laughing about it, but you're also like, what the is happening? All that's like, gone now. It's fantastic. Awesome. Yeah, that's very cool. Long term for your kids. I mean, they're still pretty young, right? So are you very involved at this point out of the stress, anxiety piece, or do you let them do it and you kind of oversee it, like, what's the day to day look like with you guys?

Lana 52:40
They're 11 and 13 now, and I'm still fairly involved. My thought is just, you know, after they're 18, once they move out like then they have to do it 100% and right now, I'm happy to help them, you know. And I know eventually they need to be a little bit more independent. But for now, I don't feel it's the right time, and just do what I can to take off some of the burden from them. But they do some things on their own, like at school, they know their carbs, what they're eating, and they enter it in the pump. And they're doing that independently. Occasionally, with my daughter, she'll forget doses. So I've started recently just doing another text to her, just to remind her, yeah, this is the first that they've been more independent before it was for sure. I was always texting them, and they would tell me what their dose was,

Scott Benner 53:32
right? So you see it growing slowly. Yeah, that's how I like it. Actually. Do you think if you release them feral right now, they could take care of themselves? No,

Lana 53:40
I don't think like their brains aren't ready to take Lana. I used

Scott Benner 53:46
to take a lot of crap from people who'd be like, you're doing it all for her. She's not gonna know how to do it when she's an adult, like all that stuff. And I would always tell them, like, I'm, first of all, we talk about it while we're doing it. It's not a big secret. You know, like, I see a plate this looks like this, bunch that looks like this, looks like that. Maybe we should extend it here, etc, like, that kind of stuff. And so she was learning as we were going. And then there's times where you'd just be like, hey, bullish, your meal and see what you think. Or we'd even do that thing where I'd be like, Hey, I know how much I think you should have. What do you think? And then she'd say, and I'd be like, well, let's try what you think. You know, and like, we would do that, that stuff a lot. And then, I mean, Arden's two years into college now. She's almost done her second year, which is insane, and she's doing great, like her a 1c is, I mean, I don't even really look at it anymore, to be perfectly honest with you, I'd have to look to see what it is.

Lana 54:37
We definitely like do that, to try to get them just to kind of help with some decisions. And, you know, what do you think? And, you know, kind of we do the sugar surfing method. Kind of just recently, I've listened to that episode of yours with Dr ponder, okay, so kind of trying to just teach them that a little bit. And just like he's interested in, like, learning. About clarity. So every week, I'll print off the AGP report, just kind of looking for things. And you know, he's curious. So he's wanting to know, you know, why I might make a change, or that's great, and look at it and see what he thinks. So I

Scott Benner 55:15
like a very slow, steady handoff. It takes years. Actually, I'm probably with you. I don't like the idea of just like, flopping all this on an 11 year old and being like, hey, you can do this. Because I'm not sure that it works that way.

Lana 55:29
If I'm stressing it, I'm sure they would be stressed doing it themselves. Yeah,

Scott Benner 55:33
they came to me and said, Look, you know, I want to, I want you out of this. I'd say, All right, well, I can, you know, you can do it, but you know, we're gonna have checks and balances in place, and then once it all looks good, then, you know, okay, but not just gonna flop. I mean, honestly, they're 13 and 11, right? Like, what else are they in charge of? Nothing. You know what I mean. So I think it's weird to put an 11 year old in charge of, like, a major health thing that's difficult and daily and unrelenting just seems strange. Yeah, so I agree with the idea. Have you heard the Pro Tip series for the podcast? Yes, okay. Was that helpful? Definitely. Oh, good, good, good.

Lana 56:11
I've recommended it a lot to to other people that have been diagnosed since my kids were and, yeah, definitely love the pro tips and kind of just random other ones that I've listened to, like the defining diabetes. I'll kind of just go through the lists with the pictures of what is in each one, and then pick what episode is something I want to learn about that day. Very

Scott Benner 56:31
nice. I shared that series this morning because somebody, somebody put up a photo of something that is very clearly something called feet on the floor, and another person came in and said, That's Dawn phenomenon. I was like, ah, it is not that. It's not Dawn phenomenon. And I so I said, Hey, here's a, you know, defining diabetes series. You can listen to what these different things are, these different terms, but you're misconstruing feet on the floor with Dawn phenomenon. I like that because they're shorter episodes, and people can get a lot of terms. Like, you know what I mean? Like, I supposed to know what all this stuff means. It's just a lot. So, yeah, very cool. I appreciate you doing this very much. I am going to say goodbye to you, and then I'm actually gonna go ready to I'm doing an interview with The New York Times today. Oh, fun.

Lana 57:18
I have one more question. Go ahead, do your thing Canada. Is there ever a chance that you would come to Canada to be a guest speaker?

Unknown Speaker 57:26
Okay?

Scott Benner 57:28
I was just approached by somebody on the West Coast, and I said, I'll do it like remotely, but I can't, I mean, it's like, it was like a six hour flight. I was like, I'm not doing that. I mean, if you could do more Toronto, Montreal, that's closer to me. Just something to

Lana 57:48
think about. I know there's lots of people that would love to have you come to Canada. And so

Scott Benner 57:53
I would love to see Canada. It's

Unknown Speaker 57:55
a great place.

Scott Benner 57:55
Well, listen, first of all, I think it would be nice if when I spoke about Canada, I actually knew what I was talking about that would, first of all, I think, be lovely instead of, instead of how I handle it right now,

Lana 58:06
I think you should put it on your list, and then I'm sure there'd be lots of people

Scott Benner 58:11
that would love to figure out their

Lana 58:13
way to do a conference.

Scott Benner 58:14
Yeah, no, I was very excited when someone reached out, but they were about as far away from me as they could possibly be without being in like, the tip of Alaska, yeah. I mean, I'd love to come to Canada. I wish. I hope somebody invites me and it tells me it's not six hours on a plane and two layovers and stuff like that. But for those people, I was like, I will absolutely do it virtually, like, no problem at all. But yeah, no, please reach out Canada, like during the warm months, if you would. Sounds good. Yeah, thank you so much. Elena. I don't want to be cold. I just want to be clear about

Lana 58:48
that. Yeah, come in the summer, it'll be fine, absolutely. Well,

Scott Benner 58:52
okay, all right. Well, I appreciate you doing this very much. Hold on one second

Unknown Speaker 59:01
for me. Okay, I

Scott Benner 59:02
A huge thank you to one of today's sponsors, gvoke glucagon. Find out more about gvokepopen at gvoke glucagon.com, forward slash juicebox. 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 us med for sponsoring this episode of The juicebox podcast. Don't forget us, med.com/juice box. This is where we get our diabetes supplies from. You can as well use the link or call 88872115141. 87211514, use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us. Med, I want to thank the Eversense CGM for sponsoring this episode of The juicebox podcast learn more about its implantable sensor, smart transmitter, anchor. Terrific mobile application at Eversense cgm.com/juice, bot, and keep listening. There's some exciting news coming very soon in New Eversense ads. Alright, kids, we're done. We're at the end. Just do me one last favor if you can, if you could, please, if you have the need or the desire for something that one of the sponsors is providing, please use my links or my offer codes. They help the show so much, and that means me, you're helping me to make this podcast every day. You're helping me to support the private Facebook group do all the things that I'm doing. I'm not asking you to buy something you don't want or something you don't need, but if you're going to get one of these items, use my links or my offer codes, they help me a ton. Thank you so much for listening and for supporting. I really do genuinely appreciate it. I'll be back very soon with another episode. 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.

#1325 Fight the Power

Bethany talks about balancing life with diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome back to the juicebox podcast.

On today's episode, I'll be speaking with Bethany. She's the mother of a child with type one diabetes who was inspired by another episode called Adam's Song to push to get what she needed for her daughter. 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 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. If you're looking for community around type one diabetes, check out the juicebox podcast. Private Facebook group juicebox podcast, type one diabetes. Today's podcast is sponsored by touched by type one. Check them out on Facebook, Instagram and at touched by type one.org. If you're looking for an organization who's helping people with type one diabetes. You're looking for touch by type one. This episode of The juicebox podcast is sponsored by the continuous glucose monitor that my daughter wears, the Dexcom g7 dexcom.com/juicebox Get started today using this link, and you'll not only be doing something great for yourself. You'll be supporting the juicebox podcast. Today's episode is sponsored by Medtronic diabetes, a company that's dressing hyperglycemia head on a topic that often gets overshadowed by the focus on hypoglycemia. Learn more at Medtronic diabetes.com/hyper

Bethany 2:19
Hi. I'm Bethany, and I'm the mother of a two year old little girl with type one diabetes.

Scott Benner 2:26
Oh, two years old. How old was she when she was diagnosed? Yeah,

Bethany 2:29
she was 19 months old. Oh, gosh, okay,

Scott Benner 2:33
this is not Yeah. So

Bethany 2:35
my, my baby, I'm

Scott Benner 2:36
very and this all very new. How old is she now? In months,

Bethany 2:39
she is. She will be three in June. Oh, okay, so she was diagnosed January last year. So we're, we're a little over a year now into diagnosis, getting towards

Scott Benner 2:50
that year and a half spot. Is it any different today than it was, let's say the third month?

Bethany 2:56
Yeah, it is. It's definitely better. I would say we're still not in a great spot or the spot that we want to be, but we're we've definitely made progress from where we were this time last year. How

Scott Benner 3:10
do you score the spot you're in? How do you How would you describe where you are?

Bethany 3:14
I would say, if I were to use a scale of like zero to 10, we're probably around like a six. I would say most days,

Scott Benner 3:22
is a six a success? Is it a Is it not a success? How do you feel about that grade? I

Bethany 3:30
would say it took us a while, I guess, for context, it took us a while to get a treatment team that we really felt like aligned with the goals that we had for my daughter, and now we do have that team. And so we spent a good part of the last year kind of fighting some barriers in the healthcare system and just not feeling like we had a healthcare team that was really listening to us and the glycemic control we wanted for our daughter. So yeah, we made some changes here within the last four months, and I feel like we're on a good path, but almost just starting off that path. So we've got some we've got some room to go.

Scott Benner 4:10
What do you do for a living? Or what's your background, your education background?

Bethany 4:14
Yeah, I am. I'm a psychologist, so I actually work, and I work in the healthcare system where we were receiving care. Listen,

Scott Benner 4:23
I should have prefaced this with more backstory so that I could have taken credit. Now I'm stuck just with you having to believe I knew you had a job something like that, or your background was like that because of the way you described your transition from the team you had to the one you have now it was so iterate of how they would feel if they heard it that,

Bethany 4:44
you know that that does not surprise me. I've been given similar feedback. I have a very gentle kind way of talking about other people. Yeah,

Scott Benner 4:56
I just, I've spoken to other people who would have said like I was. Saddled with some people who didn't know what they were talking about. We got rid of them, and now we're doing better. And you were just so polite. Like, say she's like, maybe she owes the money and she doesn't want the man, like, what's going on? But then I thought, no, she's probably in mental health care somehow. Or I thought you had a very corporate job where you're just very accustomed to being overly nice to everybody. I couldn't figure out which it was

Bethany 5:24
probably a combination of both. So I'm a I'm a psychologist, I'm also a supervisor for our team. And then when Cora was diagnosed, I decided to go back to school to get my Master's in healthcare administration. So I'm also also doing that too.

Scott Benner 5:42
I think I should get a degree in generalization, because I'm amazing at it, so I don't understand why people don't like it when you generalize generally, you're right. So anyway, that's it. Was very kind of you, but what were the problems you were having that made you get away from the people you were with initially? And now we're going to hear from Medtronic champion Terry. How long have you had diabetes? June 2025,

Speaker 1 6:08
it'll be 50 years. I'm very much involved in the diabetic community in a lot of areas, and I helped start the walk here in Lincoln, Nebraska

Scott Benner 6:17
when you were first diagnosed, what was management like?

Speaker 1 6:19
I started out on beef, pork insulin. And I tell people jokingly that I used to smell like a bacon cheeseburger. Tell me about the impact of Medtronic technology. Finger stick is only a point in time, and that first 20 years for me was extremely difficult because I had high blood sugars all over the place. The CGM, to me, was the lifesaver.

Scott Benner 6:45
Prolonged hyperglycemia can lead to serious health problems and long term complications. Early, inconsistent management of hyperglycemia is critical. Learn more at Medtronic diabetes.com/hyper

Bethany 6:59
I think so. We had a really positive experience when she was initially diagnosed. The inpatient team was great. You know, when they were giving that, I know you've called it in the past on the podcast do not die advice. Like I felt like the do not die advice that we gave was really supportive, very empathic. They really listened to our concerns. I was really worried about, you know, I almost have enough knowledge of medical conditions that can be dangerous and just fuels my anxiety. I'm not medically trained, but I work in in a healthcare system, and so I knew what a Dexcom was. I knew what continuous glucose monitors were, and so when she was admitted, I wanted to get a Dexcom on her as soon as possible. And so I told their team, like, I don't think I'm going to be able to sleep until she's got a Dexcom. They were like, how do you know what that even is? But they listened to me, and they heard my concerns, and they got the prior auth started, and we got a Dexcom the day she left the hospital. Okay, so

Scott Benner 8:01
positive upfront, something happens then you I mean, is it? I mean, can I guess first of all before I guess, let me say, I love that you took my my colloquial phrase, don't die advice. And we're like, let's not conjugate, Scott, do not die advice. I do. I like you. You're very you're very proper. Thank you. But so I'm gonna guess that you wanted more stability, or you wanted lower numbers or fewer spikes, and they were telling you, oh, she's only two. You're doing great. Yep,

Bethany 8:33
that's exactly what it was, right? We were initially seeing numbers in spikes up to 400 up to, you know, readings for the Dexcom. We weren't even getting readings from the Dexcom, and, you know, settling above 200 and they were saying, you're fine. You know, you're doing so great. And my husband and I weren't satisfied with that. We wanted better glycemic control again, like I knew at first, I was like, you know, we're so far from where I want to be long term for her, but I feel like a good first goal would be, hey, the research says under a seven, A, 1c, prevents long term complications. My baby's going to have diabetes for most of her life. She's only going to have, you know, a very, a year and a half of her life where she doesn't have this problem? Yeah, I want to give her the best opportunities possible. I have, you know, financial resources, I have the mental resources to do the very best for her, and so that's what I want.

Scott Benner 9:33
And when you said that, did they just say, No, you're not that. That's okay stay here, or did you just feel like they weren't going to be supportive? So you moved on, on your own.

Bethany 9:41
Well, it got, it did get to a place where they eventually just said no, but at first it was very much like, if you want to do that, that's fine. We don't know very much about that. So, for example, we got, I wanted to get her on a pump right away, because she was very she was very tiny, um, she was only. She was less than 18 pounds when she was diagnosed, because she lost weight leading up to diagnosis. So I've got this itty bitty, tiny, 19 month old who I could barely give a half a unit of insulin to. She she left on a half a unit of long acting and even that, she was dropping through the night. So she's really insulin sensitive. So we start doing research, and we say, hey, like, if we can get a pump, we can give her much smaller doses of insulin. I want that. And they never, they didn't say no, but they didn't really support us in the Yes, it was, if you want to, that's fine, like, we'll put the script in, but there was no support helping us optimize I see the pump or use it in any way. We were kind of just on our own. They

Scott Benner 10:43
were sort of almost shadow banning you, like they were. They were like, Oh, that'll be fine. But then behind the scenes weren't doing much to help it move forward, absolutely.

Bethany 10:51
Yeah. So we started off with two months post diagnosis. We got her on OmniPod five, and they were like, we don't know a whole lot about this algorithm. If you want to try it, you can. And, you know, I not

Scott Benner 11:06
getting any help, and having to feel like, Oh, I think they're helping me, but they're but they're not. Yeah, yeah.

Bethany 11:12
It was, yeah. It was a lot. It was very confusing.

Scott Benner 11:17
Today's episode of the podcast is sponsored by Dexcom, and I'd like to take this opportunity to tell you a little bit about the continuous glucose monitor that my daughter wears, the Dexcom g7 the Dexcom g7 is small, it is accurate and it is easy to use and wear. Arden has been wearing a Dexcom g7 since almost day one of when they came out, and she's having a fantastic experience with it. We love the g6 but man, is the g7 small, the profile so much closer to your body, the weight, you can't really feel it. And that's coming from me, and I've worn one I've worn a g6 I've worn a g7 I found both of the experiences to be lovely, but my gosh, is that g7 tiny, and the accuracy has been fantastic. Arden's a 1c. Are right where we expect them to be, and we actually use the Dexcom clarity app to keep track of those things. That app is built right in to Arden's Dexcom g7 app on her iPhone. Oh, did you not know about that? You can use an iPhone or an Android device to see your Dexcom data. If you have a compatible phone, your Dexcom goes right to the Dexcom app. You don't have to carry the receiver. But if you don't want to use the phone, that's fine. Use the Dexcom receiver. It's up to you. Choice is yours with Dexcom, dexcom.com/juicebox,

Bethany 12:41
I think the way that I learn best is I ask a lot of questions and I do a lot of research, and that helps me decide on a direction moving forward. And so I almost think, you know, initially, they kind of put up with that, and then over time, I think they just got really annoyed by me in my questions and in it, you know, I think looking at I was always polite, I was always kind, I was respectful of their time, but I would ask. I would kind of push them outside of their comfort zone on questions that I feel like they should be able to but, you know, looking back, I just think they didn't have the resources to provide what we needed to support our daughter. So

Scott Benner 13:24
polite. What do you mean resources? Do you mean the clinic? Do you mean intellectual faculties, or actual people? Or what are you saying?

Bethany 13:33
I think like, like, manpower, resources, they only had one diabetes educator for the whole clinic, okay? And

Scott Benner 13:40
you think if there were more of them, they could have given to are you saying to me that you think they had more to give, but no time to give it? Go ahead. Let go. Bethany, let go. Just let go. I

Bethany 13:51
think they, I think they weren't

Scott Benner 13:56
so close. You're so close, Bethany, you're so close.

Bethany 14:01
I don't think they were upfront with the limits of what they could provide. Eventually, after I pushed enough, they were more transparent with me to say, look, we only have one or two kids chorus age per year that come through. And then by the time you know, they really get more control, they're older, and it's easier to control them. And so you're asking questions that we just don't have any experience with and so I it eventually got to that place where I feel like the diabetes educator is more upfront and transparent with me, but leading up until that, we just were kind of ignored, or like phone calls weren't returned, or we got that's a really great question. You make me feel like your questions make me feel like I haven't been doing this job for many years. Yeah, also,

Scott Benner 14:44
is that how it makes you feel? Because the way it should make you feel is that you've been doing it for a long time and you haven't bothered to figure it out yet. Yeah, no, everything becomes so paint by numbers for them that they don't they can, by the way, there plenty of people who are good at it not saying otherwise. I. But when you get stuck with someone who doesn't know how to help you, they you know, and you have to understand in their mind, they think they're doing a good job, like they do. Yeah, yeah. The ADA says seven. You're seven. It's good. I want to go back to something you alluded to didn't like right out say, but my daughter was diagnosed when she was two, and it was like, right after her second birthday just a handful of weeks, maybe. So I recall very strongly someone telling me when I asked about this, Hey, well, what about these higher blood sugars and these spikes and like, is this not going to be detrimental to her health? And someone looked me in the face and said, complications from type one diabetes don't come for like, 30 years. And they said that to be comforting, but I responded and said, but she's only two, right? Are you telling me, my daughter is going to have diabetes complications when she's 30? Yeah, because that doesn't stay with that. Yeah. That doesn't sound very comforting to me. Does it sound comforting to you? Then there's a pause and a stare. No one ever goes, Oh yeah, that was a dumb thing to say. I shouldn't have said that, you know, right,

Bethany 16:10
exactly the treatment that we got to, right? If we we'd say these things, and they're, you know, I think they would try to be comforting of but also, in my mind, I'm thinking through all of her, right, not just two year old her, but also the 12 year old who wants to try to do it on her own. And, you know, I want to be able to give her the best glycemic control I can now, so that she can have the opportunity to mess up and figure this out on her own. No, I don't want her sitting at, you know, horrible, a 1c you know, until she gets a little older and it's easier, and then go into puberty, and there's always going to be something hard. And I want her to be able to have bandwidth. You're trying

Scott Benner 16:58
to buy her a little time to figure it out by yourself. Yeah, Bethany, what makes you sleep? Why are you smart person? What happened? How did you think that far ahead?

Bethany 17:07
I don't know. I think probably has to do with my job too. You know, as a psychologist and providing therapy like I don't work with kids. I work with adults. And so often, though, when I'm working with adults I, as I'm thinking through right like my clinical impressions and my treatment plan, and how can I help this person? A big factor of that is, is their history and what, what they have coming into this now? And so I think I think about that for my own kids too, in in most areas of their life, including, you know, in diabetes for my for my youngest daughter, it felt

Scott Benner 17:41
like you were trying to put time in the bank for her, like, buy her credits, almost, so that, like, so, so you Okay, so you matched up your psychology background and said, there's obviously a good chance that when she hit 1718, 1920, she might rebel against this, and if we do really well up until then, and she has a couple of bad years, maybe that helps us not have health issues down the road even further. Yeah,

Bethany 18:09
because I know some of that rebellion again, putting my training hat on like I know that some of that is very developmentally appropriate, and so I wanted, I don't want diabetes to take that away from her like I want her to be able to do all of the things that are developmentally appropriate throughout all of the stages of her life.

Scott Benner 18:30
Bethany, take a left turn with me for a second. Tell the people listening why it's important for your kids to push back at certain ages so

Bethany 18:36
that they can they can build independence.

Scott Benner 18:40
So if you keep them under your thumb and you try to control them the whole time, all you end up with is larger infantilized adults. Yep, yep, okay, yeah, bite your tongue sometimes and they say something, and they're just clearly just testing boundaries and trying to see if they're gonna like, like, what happens if they don't listen? If they take another half step? That stuff's all very healthy, Yep, yeah. Okay.

Bethany 19:02
You know, I think when I work with adults who are going through this for their own kids, you know, one piece of education I'll often give is, you know, your teenagers telling you that they don't need you, but they do. They just need to say that they don't need you. What they need you to do is they need you to say when they say they need time by themselves, and they need to know that you're still in the hallway or in the room or downstairs. If they decide to go there, they might not do that, right? They might not come to you, but they need to know that you're still there. They need to know you have a soft they have a soft place to land with you.

Scott Benner 19:37
You know, I had as a stay at home dad for a very long time. I guess there's an argument to be made. I'm a podcaster now, but as I'm 52 it sounds embarrassing when I say that out loud, but, but I always thought that one of the most important things I was providing was a very small, almost imperceivable idea that when people came in the door, there. Somebody at home base, like I was there and that they Yeah, that they knew when they got back, there'd be somebody there, yeah, yeah, and that. And it wasn't like, right away, like, what'd you do? How do things go? You know, you weren't it was just like, Hey, what's up your presence? Yeah, yeah. Chat. Like, it's hard to say I miss it, because we still do it be. I miss how young they were. Yeah, I miss those, like, after school conversations, when they, like, blurred out everything that happened to them, you know. And I very much enjoyed that we still do it. It just looks different now. Now it's like Arden on FaceTime from college at the end of a day, or, you know, my son, you know, just talking about, like his job search, and you know what he's learning with friends as he gets older, and interesting to see him start to pay attention to how other people are treating third parties and how I don't how, you know, I don't want to be involved with a person who treats other people like that. Yeah, really, really like fun stuff. I still feel like I'm growing from them. Yeah,

Bethany 21:02
you know, I think one reason right, like, I know that for my training, that this is what's healthy and developmentally appropriate, but also I really benefited from that structure in my own family. Growing up like my parents have always been really intentional the way that you have to be that soft place to land. I remember my mom very explicitly telling me, you know, going when I went to college and graduate school, you know, telling me, honey, you know, like you know, that no matter what happens, you always have a soft place to land, here at home. And they really were present in that way. And so I think as I think through what I want for all of my kids, including, you know, my daughter with diabetes, like I want to be that for them, like I want that was such a gift that my parents and still is a gift that my parents give me. And so that's just really important to my husband and I to be able to do that for our kids too. And

Scott Benner 21:59
am I right to say that in your experience with your own parents, soft place the land doesn't mean no pressure, no stress. You don't have to try. It has it means go out there and try. And if, if you fall in your face like you can drag your ass back here and pull it back together again. Yep,

Bethany 22:17
yeah, totally. And they'll be honest with me too, when I'm, you know, when I'm off mark like that. We had a situation recently where I just, oh, you're just having, like, a horrible Diabetes Day, and my husband and I were arguing, and I just went to my mom to kind of like, vent about it, and she was like, you know, I hear you. I also think you probably need to go take a nap, and then you might feel better about this afterwards. She's like everyone. And my mom always growing up, she even had, like, a picture of it at her at her work. It's a picture of a little snowman that's melting, and it says everyone's entitled to an occasional meltdown. And she's just notorious for saying that. So in that moment, she told me she's like, you know, everyone's entitled to an occasional meltdown. I also think you need a nap right now. Mommy

Scott Benner 23:02
has hers in her walk in closet, in case you're wondering,

Bethany 23:07
I did. I took a nap and then I did feel better afterwards. But yeah,

Scott Benner 23:11
I think I've said to my wife more than a handful of times, why are you yelling at me?

Bethany 23:19
We're all entitled to an occasional moment.

Scott Benner 23:21
You should see, like, I've had some like, monumental, like, fall apart in my life, and I can even feel myself leaning into them as they're happening. Yes, it's almost like, it almost, you know, when you watch a bad TV show and you're like, are they trying to be bad actors? What's happening right here? Like, I've leaned into things too hard a time or two.

Bethany 23:41
Oh, and I think after post diagnosis, like something like diabetes in your two year old just kind of makes brings that out too, like I remember, and I think that's one thing that's been really helpful for me, listening to juicebox, knowing that Arden was diagnosed so young, and like we listened my husband, I listened to the Pro Tip series. There'll be all of those, and that's really helpful for our management. But I love hearing the stories, because there will be, like, those little moments where you'll talk about those early years with Arden, and it's so incredibly validating. Like, there was one episode where you said, like, Yeah, I mean, for a long time, I just went into the shower and cried, and I was like, Oh my gosh, someone else did that.

Scott Benner 24:20
The best place to cry your face is already wet, so it's really half handled already, you know, because it's

Bethany 24:27
just, it's always horrible when your kids diagnosed. But I think there's something particularly horrible about your baby being diagnosed with diabetes. Yeah, yeah.

Scott Benner 24:36
Also, you know, well, I don't know. I was talking to a person the other day who wanted to bring up all the kind of good things that she got out of her diagnosis, and she's like an older type one, which I love the conversation. And I want to say that I, you know, obviously you wouldn't trade, I mean, I'd give diabetes away for anything. You know, when my mom passed away, I remember being in the hospital room with her. Know the last last hours that I was going to be with her. I knew for sure, and I knew we were saying goodbye to her right there. And I turned around after I talked to her, so that she couldn't see me, and so that my other brother could kind of get and kind of come up to her and talk to her personally too. And I I'm still surprised I didn't break all my teeth trying not to throw whatever was in front of me out the window, yeah, you know. And, and I wonder how much more poorly I would have handled it if I hadn't been through all these other experiences in my life, yeah, you know. And a lot of these experiences taught me, personally, tiny modicums of self control, like, like, through the like, like, because I can remember standing in the shower and I feel like I could have punched a hole in the wall, you know, and I didn't. And I felt like I could have screamed and I didn't, because I didn't want my kids to be upset. I didn't want my wife to know that I was struggling. I didn't mind her knowing I was struggling. I didn't want her thinking that I was collapsing because I wasn't. I just needed a release after that whole day of keeping a two year old alive with diabetes, yep, and just knowing that it wasn't over. Now it's the evening and the laying down, and are we going to sleep through the night? We're probably not, and then I'm going to get up in the morning. In the morning and start over again and and do it again and again. And Saturday doesn't matter. Saturday's not Saturday anymore. Do you know what I mean? Like, Sunday's not Sunday? Saturday's not Saturday. Every day is just like, ready, set. Don't die. Don't die. Survive. Keep your kid alive. Yeah, yeah. Go, go, go over and over again. Anyway, I know that helped me. I've been mindfully trying to become more patient throughout my adult life. And I'm, I'm there now, like I'm, I'm I'm there, I still have moments and everybody is like your mom said, you know is going to but I'm there now, like I have an appreciation for slow and steady and consistent, and I apply that to my expectations too,

Bethany 27:05
you know? Yeah, I think this experience, it builds resilience, right? And I see that within my husband and I even just over this last, like, little under a year and a half. I also see it in my daughter too, and on the one hand, right? Like, it breaks my mom heart a bit, because she's resilient beyond what almost three year old should have to be. But I'm also really proud of her too, and and just how she's she's been a trooper. People ask us how we're doing, and we're like, well, she's doing great. She's doing the best out of everyone, because she's just living her life and happy as can be and doing great. I'm really proud of her. I also just like it makes me sad that she that this is the weight that she has to carry.

Scott Benner 27:55
No, of course, how do you have other children?

Bethany 27:57
I do. We have an eight year old, eight year old boy, and then a five year old daughter in the middle, and then our type one is our youngest.

Scott Benner 28:06
Gotcha. How are you like? I'll talk to you first personally. How do you feel like you're handling this new experience for yourself, and where is it getting you and where you Where are you doing well?

Bethany 28:20
I just really struggle. I've always been a more anxious person, and I feel like leading into diagnosis that was in a relatively good place for for years, leading up to kind of where we were at when Cora was when my daughter was diagnosed, and then we just had a few really hard life experiences in diabetes was the cherry on top. And so I think the most sensitive one kind of before Cora was diagnosed as my eight year old, he had a tonsillectomy and adenoidectomy. A month before my daughter was diagnosed. He did great. The surgery itself was fine, but then that night, he hemorrhaged at home to the point where he was, I mean, profusely bleeding from surgery. And so, you know, ambulance was called. They rushed him into emergency surgery. He was fine, you know, they they had to cauterize the the back of his throat again. And he stayed the night at the hospital, and he was fine, but it was wait. He was hemorrhaging out of his mouth from his tonsils. How

Unknown Speaker 29:27
old was he

Bethany 29:29
seven? Oh, did

Scott Benner 29:31
you like?

Bethany 29:32
It was horrible. Cry,

Scott Benner 29:34
fall over. Did it all happen at once? Like, what did you do?

Bethany 29:37
I mean, initially, I just went into this is what we need to do mode, right? Like, I was like, okay, he's hemorrhaging. I'm calling 911, I'm getting a bucket, right? Like, we're getting his coat on, we're getting shoes on, we're gonna wait at the curb for the ambulance. We're going and so it was just go, go, go. This is what we have to do. And then there was a moment in the ER, because I just was in go mode. And. So was all, were all of the nurses and the medical team around us. So they rushed us back, you know, they got them suctioned at some point, I don't even know how, because it was such a blur, someone asked me, like, can you hold, can you hold a suction? And I was like, Sure. And so I'm here, like, suctioning blood out of my son's mouth while they're getting him ready for surgery. And I was probably there for about 15 or 20 minutes, like, whatever, all of this was going on around me. And then I think one of the members, one on one nurse, recognized that, like, oh, that's mom. That's mom. That's not Oh, my God, that's mom standing there. And she went up to me, and she's like, your mom, right? I was like, yeah. She's like, let me take that you don't need to be doing that. I'm sure you are having a hard enough time, like you don't need to be doing that. And like, in that moment was when I just, like, broke, yeah, I just fell apart, and I said, thank you. And I just was sobbing. And he was like, he never was unstable, but he was pretty out of it at this point. And so, like, he was, I wasn't worried he was gonna see me breaking down. And then shortly after that, they got him back. And, like, it was very uncomplicated, like they know what to do at that point. They just re cauterize it. He was on the on a, you know, they admitted him to the hospital. But it was, I think, from, like a just witnessing how much blood there was and how traumatic it was. I mean, it was dramatic. He had a ton of blood in his stomach from the hemorrhage, and so, because I don't know how long he had been hemorrhaging, he was, honestly, he was just, he was playing like a Pokemon card game with my husband on the couch, and then he just turned to me and he goes, I'm bleeding. And I was like, You're bleeding. And he was like, I'm bleeding. And he like, spit blood into his hand.

Scott Benner 31:47
What are the doctors who did the procedure say after that? Sorry. What are they? They don't what happens there? I

Bethany 31:54
think it's just so normal for them that, like, this is a known complication from a tonsillectomy, right? It doesn't happen super often, but it's like one of the most common, you know, one of the most common complications that happens. That's

Scott Benner 32:06
a good example, Bethany, by the way, of anything can happen and you shouldn't. You shouldn't think that it's not going to happen to you, because what a real random ass thing to happen. Oh my god. I was

Bethany 32:16
just like, shell shocked after that, like I was terrified he was fine. He made a totally fine recovery after that, but my nerves were just shaken from, like, I was really anxious about, like, the health of my kids, and then Cora was diagnosed, like, less than a month later, and I was like, What is going on? What? What is happening to my life right now? Yeah, well, it's

Scott Benner 32:40
interesting to hear you talk about, because it's all reasonably fresh for you. Yeah. So you you transition from the care team to the new care team. Were they able to support you better, right? Yeah. What was their support in? Was it actual functional? Here's Step one, two and three. Or were they just standing behind you when you were saying, Hey, I found this guy's podcast and would be doing this stuff now. Yeah,

Bethany 33:06
no, that's a good that's a good question. So I actually one of the reasons why I wanted to come on to be interviewed was because I really went into advocacy mode after listening to another podcast episode of a dad with a kiddo just like my daughter, you know, same age, same weight, hearing the care that they received and how starkly different it was from the care we were receiving, really made me be like, Well, I'm not putting up with this anymore. I'm I'm kind of done, you know, I've been kind. I've pushed, you know, I This isn't okay. And the real kind of piece that it was hinging on was using diluted insulin in the pump. That was something so we, we used OmniPod at first. We probably shouldn't, have to be honest, she only was on like three or four units total for the day. And you know, when I said, like, Hey, should we try automated mode? They're like, sure, if you want to, you know, without really telling us, like, hey, the minimum amount is five. It might not work for her. Let this help you get a manual profile and pump until she needs more insulin. So it was a mess, and this is with me, like I'm reading books, I'm listening to all your podcast episodes. I'm reaching out and asking questions. Like, I'm doing all of this on my own with my husband too. You know, he's doing all of this as well with us. And eventually, you know, I came to them, and they're like, it just sounds like, instead of trying to troubleshoot to help OmniPod work for us, they were like, it just sounds like it's not working. You want to try a different pump? Well, I think that was the right choice at the time, ultimately, like it was really kind of their only solution that they offered. They didn't really offer much other help to try to make OmniPod

Scott Benner 34:51
work. They ended up with a good solution, but not on purpose, maybe

Bethany 34:56
no. And their reasoning wasn't really pure either. They were like, we just know. T slim better. We'll be able to help you more with T slim. But then when we switched, we slipped, switched to T slim with basal IQ. Initially, like, went under the guise of like, we know it better. We can help you better. We'll help more with settings. We switched, and it was just the same story, like we were just doing it all on our own. You know? We'd ask questions like, hey, we think we need to do basal testing. Any idea on how we should do that with like, a two year old? And you know it, it's not like they wouldn't answer or say anything. It's just what they had to say. Wasn't really helpful. They

Scott Benner 35:34
just give you a sheet of paper that that describe basal testing. Yep, pretty much, yeah. I know what they do. Don't worry. Yeah, it wasn't really helpful. I have a handout. Would you like a handout? It's a mimeograph. Do you remember? How old are you? Bethany,

Bethany 35:50
I'm 33 No,

Scott Benner 35:52
you don't know mimeograph. Nevermind. No, okay, but

Bethany 35:56
yeah. Then when it wasn't working, I, you know, was talking to lots of other people who have kids around the same age as our daughter, and how are you doing this? And a lot of them were saying, like, oh, we in order to use an automated an aid system, like, you gotta use, you have to have diluted. And so I asked our endo about that, and the response was horrible. It was just I, it made me feel like I was an unreasonable mom who was pushing for risky things for my child. I thought the looting insulin was risky using it in the pump, specifically, they said that they only used it via injection, and that it was pretty much I would say, like, can we have a conversation? Like I understand everyone needs to have limits to their past practice. But can you help me understand why that's the clinic's policy on diluted insulin in the pump, and it just wasn't even a conversation at all. Have

Scott Benner 36:51
you had a chance to listen to some of the cold wind episodes I put out this year so far? Yeah, yeah. I have listened to most of them. It helps you. It helps you in those moments. Yeah, yeah. You just go, okay, you don't know. I get it, yeah, yeah.

Bethany 37:04
They just didn't know, right? I think is what? But again, like, I would have appreciated them being like, hey, like this just, you know, it's our policy, because we don't know how to do it, but if you want to, here are some resources. Here are some other people who do do it. We can help you get set up with them. It was just, you know, if you want a second opinion, you can, you can do that without knowing very well that. You know, doing that requires them. Nothing

Scott Benner 37:30
works that way. If you went to the grocery store and you said, I would really like some Haagen dais ice cream to the owner, can you show me to your Haagen Dazs ice cream? And he didn't carry Haagen da only carried a different brand. He wouldn't say, I don't carry Haagen Dazs. He'd go, let me show you over here to what we have, absolutely. Yeah, exactly. It's just, it's, to some level, it's self preservation, because if they go telling you go over here and find that, you might leave, which, by the way, you did anyway. But like you know, you might say, Why am I here? Why am I spending my money with these people, right? You know, or my time, or my effort, or whatever it is, you're giving away to be there and not gaining returns that are valuable for you. Yeah, yeah. Well,

Bethany 38:15
so that's where we were when we listened to the episode and I had pretty much closed the door. I was like, okay, like, I guess we'll try something different. I was looking into it, and then I heard that episode, you know, really validating that, hey, I'm not a horrible mom. This is a reasonable thing that's safe for kids like my daughter. I'm gonna push for it again. And so I'm a very determined person, and so when I said I'm going to ask them about it again, it wasn't like, I'm going to send, I'm going to call them and say, Hey, can we open this door again? I, like, was doing a literature review. I I pulled academic peer reviewed papers on diluted insulin in a pump. I put together, like, bullet point lit review on, like, here's what the research says. I put together pages, you know, I reached out to all of the people I knew were usually diluted, and I said, Hey, like, what? What's your doctor's name? If you're comfortable giving it, I'm putting together a list that our care team could consult with. And so I gathered all of this, and I reached out to them, and I said, I have done a lot of research on this. Will you at least look at what I'm look at what I found. And if you're not willing to do it, can you help me get connected somewhere? Can we just have this conversation again? And they didn't even look at it. They said, No, we won't look at it. You can go somewhere else, knowing very well I have an HMO and like, there's no one else in network. And so going somewhere else meant like filing an appeal to are you trying

Scott Benner 39:39
to tell me that what they actually said to you was you professionally. You've pulled a lot of them go yourself, essentially, but I have peer reviewed literature. Oh, do you here? What are these? My middle fingers? Yeah, you were stuck, and there's nowhere to. And they don't know how to help. And, you know, my father in law ended up in the hospital last week, maybe two weeks ago now, and my wife not his medical proxy, you know, and he's married still, but they're older and, you know, so they they have struggles sometimes understanding what's happening completely, and we're contextualizing all of it as you would. And so my wife was staying out of it. She's got other brothers and sisters, and they were more, you know, involved, I guess. And the other day, I just said to Kelly, I'm like, Hey, your dad's gonna die if we don't do something. And she's like, Yeah, I know. And I said, Okay. I said, it's our turn now. So we got in the car middle of the week, drove hour and a half to where he was at the hospital, went in, said our hellos, got him, sat down, and then I said, Okay, well, that's enough of this. I'm gonna go get the nurse and get all your notes, and we're gonna read through them. And I said this on another episode, but I'm gonna repeat it here, because it really fits with what you're talking about. My mother in law looked up like, Oh my God. Like, what horrible thing are you about you're gonna go speak to the nurse, that angel out there who's clearly smarter than us and and I'm like, yeah, she's a nice lady with and I and I'm not disrespecting her. I'm like, but she's trying to keep everybody on this floor reasonably alive. She's not walking around considering dad's life. That's what we're doing. And I said, so I went up to her, I said, Hey, can you come get your you know, could you bring the computer? And we'd love to look through his notes. Went through all of his notes. Nothing was happening, by the way, like they weren't doing anything for him. They were just feeding him. And like, we'll take him off his meds and see where that goes, and in a couple more days, I'm like, You're doing nothing. He's degrading, right? So we looked through his notes, my wife and I, my wife and I came up with the three things that needed to be addressed. I went out into the the nurse's station. I said, I need a dry erase marker. We came back in. My wife wrote her phone number on the board. Our three questions after the questions are answered, If this is the answer, what happens after that? If that's the answer, what happens here? And then looked at my father in law and said, when they come in tomorrow, you call that number and put us on the phone with whoever is standing here, right? And you know he's going to be out of the hospital another day, and he's doing way better now. He was an afib. He needed to be, I don't know if you know the term cardio inverted. He needed to be shocked to get out of afib. He has a triple A that needed to be assessed to see if it needed surgery or not, and there was a medication switch that that needed to be considered. He we got him shocked. He's out of afib. He's on the new medication. They're going to watch him for two days in the hospital to make sure it's okay with him. They got a new measurement on the AAA. It doesn't need intervention right now, and he's gonna go back every six months and have an ultrasound. My father in law went from like not feeling well to looking like he was 25 years older than he was, to being okay again, because someone took five goddamn minutes to look at all the information they already had, give them an action plan and then hold them to it. Yeah,

Bethany 43:06
that was it. Yep. You know, I work in the same health system that we were getting care at, and I think what was really helpful for me, I kind of got to this like, place before the episode, before I listen to the episode of like, acceptance, of like, you know, they're not going to be helpful. I guess we're on our own, and we'll just figure this out, to being like, No, I'm going to push like, I'm going to push and I'm going to advocate within this health system. Because this is what I do for my patients. I go the extra mile, right? If someone needs something and I don't know, I say, I don't know, let me go look this up, or let me consult with this colleague. Or, you know what? I don't do that, but here's a referral to someone who does, and then I follow up and make sure that they got connected. I'm doing the right thing, and this is what we should be doing, and this is patient centered care, and I'm not going to tolerate this for my kid anymore. And so I pushed a lot very like, appropriately and very kindly, like I never yelled. I know, you know, I kind of know how to advocate in a way that is still appropriate, and I think they just didn't like it. You know, eventually we I reached out. Thankfully, my daughter did qualify for because she's so young, qualified for a program called CLTs children's long term support, and then she gets, like, a special kind of Medicaid for for kids who have disabilities. And so that opened up more options in state for us, and so we reached out to the other children's hospital nearby, and it's been like a night and day difference. And I told them, like I did the same thing. I came to them and I said, this is what we're looking for. This is what we've done in the past. In the past, it hasn't worked. You know, in order for her, I don't work in a job where I can babysit her, Dexcom. All day, my husband doesn't we need an automatic insulin delivery system so that we can sleep and so that she can be safe when she's at preschool. Right? We've tried everything. This is what we want to do. We want to do diluted in the pump and the the they were really receptive to it. They said, We've never done this before, but we're willing to figure it out with you. They looked at all of the literature. They said, Yep, I think we can do this. We also got we're working with someone from Integrated Diabetes too, who's really familiar with diluted in the pump, and then she's coordinating with our care team. And so now we're at a really good place where they're actually where we're at, like, as of today, is there. We're waiting on the dilutant to come from the manufacturer. So we're, like, in a really hopeful, positive place now, it just took a lot to get here.

Scott Benner 45:55
Yeah, how crazy is it that the extra mile means getting it done.

Bethany 46:01
It's very Yes, yeah.

Scott Benner 46:02
It's bizarre. Doggling. No, it's bizarre there. If you could step back and take a long enough view of of a life in the medical system, you're going to have your first problem. Whenever you have your first problem, mostly you're either going to live or you're going to die. There's things that happen all the time. You get the flu, that's a hit on you, right? Most of us live through that when we're younger. You have your time selected me. There's some people have, you know, a hemorrhage, but he got through it, right? Yep, that hemorrh could happen in the middle of the night. I know you thought about that, right? And, oh, totally Yeah. And so he makes it through great. We're lucky, but every time something happens, it's a ding, and we think that we're gonna go to a hospital, and the hospital's gonna is gonna shine us back up to where we were before we got dinged. But that's not their job. Their job is just to make sure you don't die and then send you back out to wait for the next time that something befalls you. Yep, it's hard to think about it that way, but that's the system. If you want something else, you gotta push for it. Yeah, we're rich or famous and be paying people and say, Look, scotty's plan here is, I don't want to go backwards. I don't just want to not die today. I'd like to live longer. Is that a possibility? I'd like to live healthier. You know, like that is not everyone's that's not the goal. Now, if you're in a catastrophic situation, then, yes, that's the goal, right? Like, if you have a car accident, or you fall off of something, you know, you know, I don't know, you cut you off your head, whatever. Like, when bad stuff happens, like, you know, then, then you're in an emergent situation, and they put your body back together in pieces. Like, right now, you're a model. But when it comes to diagnostic stuff, there's nobody. There's just, there's there's nobody whose job it is to be diagnostic about your health. And that's why you'll do it yourself, or you'll just degrade faster. That's it.

Bethany 47:55
And I think a huge piece that I don't know how to find it right. I think you just almost have to stumble upon a provider who is who has these skills. But I think a big difference between our previous care team and our current care team is that our endocrinologist now treats us like a human and is supportive and encouraging and has really wonderful interpersonal skills. We had a phone call just to kind of go over some logistics. And I think at some point I just like we were talking through just, I don't know, I don't even know what you're talking about, but I took a sigh, and she goes, You know, I don't know if you need to hear this, but I just want you to know you're doing a really great job. You're advocating for your daughter really appropriately. And you know, I'm not nervous about doing this. I'm not scared. I think that you've thought this through, we've thought it through, and I'm confident that this is the right step for her. I'm not nervous. I don't know if you are, but I'm not little bit of encouragement, yeah, and I like, teared up in that moment, because I don't think I realized until she said that, like, how much I needed or how helpful I guess I didn't need it, but I think how helpful it was for me to hear that from her doctor, to just hear that confidence and like, that reassurance and that empathy we hadn't had any any interaction with a healthcare provider for my daughter for a year and a half leading up until that moment, it

Scott Benner 49:23
felt like that. Yeah, and for you to know that this next effort you make isn't just gonna end in failure, that's a thing I don't think, I don't think we appreciate enough. You know, you hear all the time like, oh, you know, that person's non compliant. They don't try. And I'm like that. That's not what happens. They tried so many times and it didn't work out that the expectation here is this is not going to work either. This next thing you brought up is not going to help me. And so I'm I'm done not I'm not going to try like I've tried enough now it feels hopeless. It's it just. Is, it's at the core of why I talk about diabetes the way I do, because I want you to have a win. Yeah, you know what I mean, I want something to happen that you go, God damn. I meant for that to happen, and it happened like, I wonder what else I could make happen. And, you know, like, so start very basic, and give people a chance. Let them understand the basil and some how important it is. Let them understand how important it is to cover meals. You know, the so the timing of the insulin is commiserate to the impact of the food, like that. So that you can go, wow, I just ate something, and my blood sugar did not spike to 300 and I didn't get low afterwards. This is great, you know, and then, and then you build and build confidence, like learning to hit a baseball, like you just I'll tell you this my, I think my son was, God, He's 24 now, I think he was 15 or 16, and his baseball team. They were good. A lot of boys in that baseball team went on to play baseball in college. So like just to give you some context, and they were heading to Florida and to be in this tournament. And I went with him, and on the first day, like they had barely been there for 10 hours, they were already going to play baseball games hot out. And what they learned was they were, they were being matched against this team of kids who weren't just gonna go to college and play like these were the kids like, you know what I mean. And our sons were brought in like sacrificial lambs, like, and we realized very quickly that there were 20, I'm not kidding you, 20 pro scouts there to see the pitcher on the other team? Oh, no. And what? What our kids were, were good players, maybe better than good players, to put up a fight so that this kid could come out and pitch and get drafted and we could all go to hell afterwards. And so we're standing around before the game, and this kid's in the 90s, like, thrown in the 90s at 16 years old. And my son's like, what do I do? And I said, don't change who you are. Yeah. And he goes, wait what? And I said, take your swing. Like, even if it's a full second late, even if you hear the ball hit the catcher's glove, and then you swing like, like, be yourself. Like, don't change how your feet work. Don't change how your hands work. Don't try to dominate the situation that clearly you know you you don't have the ability to get in front of right now. Like, just be you. And he fouled the kid off a couple of times before he struck out, and when he came back, he looked like he hit a home run. That's awesome, yeah. And I was like, How'd that go? Like, through the fence, and he goes, I fouled him off. And I was like, yeah, exactly. And, you know, not many years later, my son could hit guys like that, no trouble. And that's kind of how I think about all of this really, you know, like, I don't know Bethany how long you've been listening, or how long the people who are listening to this episode have been listening, or what you're doing, but I really only just apply my life theories to diabetes. It's no different. Like, I don't handle diabetes differently than I handled walking my son through baseball or my daughter through high school, or any of the, you know, my my mom's illness, or I just apply common sense, stability, patience. You know, we make good decisions when we see somebody who's not on our side. We go somewhere else. You know, like these little basic life ideas. They just, they work on everything. Yeah, I want to give my secret away here. I guess everyone knows if they're listening right. Diabetes is not any different than learning how to hit a baseball. It's slow and steady, and you don't change who you are. You just, you keep doing what you're doing until it starts to work out for you. That's pretty much it.

Bethany 54:00
Well, and I, and I think the thing that the podcast does, too, is that not everyone has those skills going into that diagnosis of diabetes, right? And so it gives them, it gives them a fighting chance to be able to develop some of those skills and some of those tools.

Scott Benner 54:19
Yeah, you get to benefit from the crappy life I lived, and all the all the struggles that I went through, and the things that I had to overcome and overcome and overcome over and over and over again to get me to the point where I could look at that kid and go, doesn't matter if you strike out. Really doesn't matter at all. Just be you and and because if you would have asked 20 year old me, I would have said, You got to hit that ball. If you don't hit that ball, you're not going to college like, right? But that's not the case. Wasn't the truth, nope. But I would have felt like that without all my experiences in between. And I can thank Arden's diabetes for some of that, and, you know, and I can thank my. Mom's illness, and my parents getting divorced and injuries that I've had when I was younger, and being broke growing up, and all of the other things that put me in that situation where I had to, I had to fight, but remain hopeful. And, yeah, yeah, I just, I'll tell you right now, I am one of those people, like, I wake up every day and I'm like, this will be better. Yeah, I

Bethany 55:23
am too. I'm a pretty hopeful person, and so I think, you know, before listening to the episode, you know, I was kind of in a place where I was just, I was it was hard, the hope was still there, but it was harder to see because I was just feeling so defeated because I was using all of the tools from the Pro Tip series, and, you know, I was implementing everything that we were learning in books, but like, when you only need five units over the course of a day, and you don't have support and encouragement from the people that you think should be in Your Corner, like, so her a 1c right now is at 7.3 and like, we've worked really hard to do that and to get there, but like, we we that's not good enough still. Like we want to get it lower right, like we want, and that's why we're pursuing more of this. Because we did that with, like, no sleep. We did that with like my husband and I, dividing up the nights and being zombies at work and, you know, like doing all the things, not being able, not being as present to be as we want to be for our older kids. You know, we did. We got it there with diabetes, calling the shots and taking over a lot of parts of our life that we didn't want, we didn't want it to be taking and so that's kind of what we kept telling her former care team was like, Yeah, I see like, by all your measures of success, we're checking those boxes. But I'm telling you, we are. We are struggling. We are struggling. This isn't sustainable. It's not healthy for our family. We don't want to, you know, swap out Cora's, you know, long health for, like, the health and well being of our family. Yeah, I'm,

Scott Benner 57:09
I'm six months away from being a workplace shooter. So while you're telling me I'm doing well, I'm not, and I haven't talked to my eight year old in like, a week so and my, my husband and I haven't had sex since January, like, you know, like, there's a lot going on here. Yeah, right, yeah,

Bethany 57:23
I gotcha. But they just, like, had no solutions, like, there was no no support, there was no ideas, there was nothing. And so it was just, I was feeling really defeated, and then I heard that, and I was like, that was kind of the hope that I needed, right, that, like, there is something else that we can try there, you know, I can push, I can advocate. I'll find someone who's willing to do this. I'm not being unreasonable by asking this. I'm not a bad parent by asking these questions. And so that was one reason why I really wanted to come on to to just be able to, you know, if I could just do that for even one person listening, that's that's worth it to me.

Scott Benner 57:59
Do you happen to know the episode that helped you so much? Man,

Bethany 58:03
I'm trying to remember. I know that the I want to say the dad's name was Andrew, okay, it started with an A, oh, wait, was

Scott Benner 58:11
it an OmniPod five episode?

Bethany 58:13
No, because I think, I think his daughter is looping so on OmniPod. But he was using a combination of diluted and then they also were using like, FIAs or loom Jeb, I can't remember which one, so they had some like, I think he called it like a Frankenstein combination of insulin that was just working well for their daughter. Interesting. Yeah, I think it aired.

Scott Benner 58:40
This is my fault. I put on a lot of Con, a lot of cut. I

Bethany 58:44
mean, you do. It's my fault.

Scott Benner 58:46
I apologize. No, but it also, it's funny. It kind of doesn't matter, because, because what, what I hear, is that you heard someone else's story, and in that story somewhere, you were like, Oh, this is the thing I'm missing. Yep, right here. And each story has, I'm not going to be humble for a second. I think each story has about five or six of those. I can't expect everybody to listen to every episode, but there are times like in the Facebook group, I'll see somebody like really struggling, having a terrible struggle, and I'll think, oh gosh, if you would have just listened to this series, you'd be okay. Or if you would have just heard this interview, that would have helped you. And you know, you do your best to say, oh, try this episode. You know, that kind of stuff. But it's, I mean, the Facebook group has think it does like 125 new posts every day. It's, I can't obviously keep up with all of them.

Bethany 59:40
I looked it up. I just went to my Facebook and I searched because I went after I listened to it, I went to the Facebook group, and I said, I just listened the app the Facebook or the episode was called, called Adam's Song. And I went and I posted in the group, and I said it listening to Adam's Song and feeling so validated my daughter. Also, you know, 18 pounds when diagnosed a year ago. And we've been struggling wanting to prescribe diluted in the pump. And then I think that someone actually got us connected. And Adam and I spoke a little bit, just so I could get some resources from him too. So it was really neat. Episode 1105,

Scott Benner 1:00:17
there we go. It was in January of this year. That was only a few months ago. Well, look at Yeah, oh, wow, geez. I really hoped you. Bethany, yeah. Really have I should start. I want to. I kept asking for people to name a baby after me that's clearly going nowhere and try something else, Christmas cards or, I don't know I had this card's good idea. I live such a strange life. Seriously, I sincerely mean that because I started doing this thing in my house. My God, I started doing it when Arden was only diagnosed for a year. So that's 2007

Bethany 1:00:53
like, where we are, yeah, 2007

Scott Benner 1:00:56
and I was like, I'm gonna write a blog. And I was really doing it to bring awareness to diabetes at that point, you know, I'm sure I've said this before, but at some point, there were so many diabetes blogs not like that anymore, but there were well over 4000 diabetes blogs. It was in vogue. It was in vogue. You know, blogging was huge. And I was contacted once by a pharma company, because back then, the the pharma companies and the device manufacturers would kind of glom on to the bloggers to try to get the word out about their companies and their stuff like that. Pharma companies did these things where they'd have, like, these blogging conferences where they basically fly you somewhere and feed you for a couple days and tell you stuff that they wanted you to know about the you know, they'd say things like, yeah, you can write about this if you want, but there's no pressure. And I was like, there's no pressure. You just blew me out here. I just got to see an Indy car ride around a lot, like a track, like, privately. I mean, it feels like there's pressure, but there was, I mean, there genuinely wasn't, yeah, as a matter of fact, after that visit, I went home and I wrote about the, like, insulin pricing problems and but nevertheless, like, there were a lot of people writing, and I just one day was like, I'm not this is ridiculous. Like, how many people do you need to do this? Like, right? Like, how many goddamn blogs are there? And I stopped for a while, but I missed it a lot, and I came back. I did come back to it, but I came back to it with a with a renewed idea of what it should be and and in the beginning it was a lot of, like, raw nerve, like, this just happened. And then people would be like, Oh my God, that's happened to me. And I'm like, that's great, but it doesn't help anybody. Like, I'm like, I want to, if I'm going to spend my time doing this, like, I'd like to see people, like, elevate, not just feel like they're not alone, which is nice and valuable, but not enough. And that's when I started like, saying, like, to my wife. I'm like, I'm going to share how we actually do this, like, like, instead of just being like, like, saying, like, vanilla stuff. And I'm like, why don't we tell them how hard? And say one sees this low, you know? And so started doing that. It grew into, you know, other stuff. I wrote a book. That book got me into an interview. At that interview, this person told me I was good at talking to people. Like, a year or so later, blogging was falling apart, and I was like, Oh, I'm gonna make a podcast. And I didn't make any money doing it for years, really. And then it started to pick up steam a little bit enough that my wife wasn't, like, because in the beginning, my wife's like, this is nice and all, but are you going to make money? What's going on? Yeah, and she didn't mean with the podcast. She meant, are you going to stop with this podcast and go get a job? And because I had been a stay at home dad for so long, I was supposed to, like, transition into working again. And and instead, I was like, I'm gonna make a podcast. And I'm sure she was like, What the fuck did I marry? You know what I mean? Like, what is going on here? 100% sure. She was like, fucking loser. There were other guys, like, but it started to do okay. And I was like, I just kept saying to her. I was like, you know, if you can just wait a little longer, like, I think I can get this to, I used to say to her, like, I think I can get this to 50 downloads a day. And then I was like, I think I can get it to 100 and then eventually, I was like, I think I can get it to 10,000 and, you know, and there's, I've had days in this podcast, I've had 30,000 downloads and, and, yeah, and I, and I'm, you know, I'm like, I think I can get the month to 300,000 I think I can get this to 400,000 like. I think I get the year to 3 million like, like. And I kept doing that. And as I did that, I didn't realize I was becoming, I was becoming like a lot of things at the same time, right? And the podcast, not me, but the it turned into like a repository for information. It turned into a community for people. It turned into a thing where, you know, companies were like, hey, you've got, like, a really big listener based we'd love to buy, we'd love to buy an ad. And I was like, and my wife was like, Yes, he would like an ad. So yes, please. Please, because I had done it for so long without it, I'd written the blog. I always turned down. They used to offer you product bloggers like, you could get free pumps and CGMS and stuff like that, if you if you were like, if you had a contract with them. And I always said no to that, because we had good insurance. First of all, I don't want to seem altruistic. We had good insurance. Didn't cost us anything, really, $20 to get pumps and stuff like that. But I just said it like that, plus the, like, the $9,000 a year we paid for insurance. I could say no to that. And then when it got to be a podcast, I didn't know how much time it was gonna take. And then I was like, actively, like, I gotta get some ads. Like, this is, this is hard, but this is a lot of work. Oh, my God. Like, insane. You have no idea. Like, I don't want to complain, but I'm I have to be interviewed by the New York Times next week. And that's exciting to you. It is. But I actually mean, I have to be interviewed by the New York Times next week because I don't have enough time for that. Like, they're like, when do you want to do something? Like, when do that? Like, when do I want to do it? I was like, I make a podcast that a lot of people count on. Like, I like, I very little time, and at the same time, I'm still out there. I'm still a content creator. I'm still out there being like, hey, use my offer code at cozy earth.com to save 40% because if you do that, not only will you get amazing sweatpants, but cozy Earth will buy more ads, and then I have time, like I did yesterday afternoon, to have a one hour conversation with a gentleman named Dr Blevins from Austin, Texas, who's going to come on and do a deep dive into glps and inhalable insulin with me, because I have time to court him. He will return my call because I have a enough swagger in the space that it's like it's worth calling me back. Listen, I am able to spend an hour on the phone with him in the middle of the day, discussing with him, making him comfortable, coming up with a plan for what he wanted to talk about. I had to send him a microphone that's out of my pocket, like, you know, I'm not gonna ask him to send it back for me, you know. Like, then we're gonna record those episodes in the middle of the day and they're gonna get edited, and the editor gets paid money, and blah, and, you know, all this stuff happens. And then I, I'm on Instagram the other day, and I see somebody said, Why do you use us med for your supplies? And some person said because they pay him too silly. And I thought, god damn seriously. Oh my is that really, like, all the effort to making this thing legitimate and really being forthcoming about how we got to, you know, how I got to this spot and everything, and still that somebody's just like, hey, he's saying us med out loud because somebody's paying him to well, a yes, I am saying us med because I'm being paid to say it. But no, I didn't pick us med for money. I had my choice. Yeah, yeah. It was intentional. I chose them. And then you say that to them and you think they're not going to believe that, you know, like, but that's the truth. Like, I'm I built this thing up to where that I get to decide, Is it you, or is it Express Scripts, or is it this one, or is it like I get to decide who, who advertises with me, because they all want to, right? And so I chose, and I chose for a reason. And when you hear me in the ad say, I love the reorder process from us Med, I mean that like, you know, like, like, and I get to mean that, and feel good about that. And then all of that brush aside. The reason I went through all of that is so that your kid could be okay, Bethany, like you specifically. And it's a long way to walk to find your you and your son and your family, but like, if that's the goal, the rest of it's just the, I mean, it's basically the engine that allows me to do that. If that makes sense, I don't know how I got on this. I think I must be thinking about it, because that lady said that I took the US meds at for money piss off and made me sad at the same time anyway.

Bethany 1:09:03
Well, I mean, I think, I think it can be, I'm imagining hard to see those types of things right in the comments, but it I genuinely think that the podcast is making a difference. I think it would have been very easy for me in that, in that moment, to just be like, Okay, well, I guess we have to write it out a couple more years until she's older and, you know, we have more bandwidth, you know, and I can I it for the whole first year, I would hurt. I would hear people say, like, oh yeah. They're like, spiking. I'll just throw a half a unit at it. And I'm like, throw a half a unit at it. That'll tank my daughter, correction factors, 400 throw a half a unit at it. What do you mean?

Scott Benner 1:09:48
It's when they're little and you hear like other adults or even larger kids talk about it is difficult to wrap your brain around what other people are saying. For sure, yeah.

Bethany 1:09:57
I mean, it's just yeah. Yeah, and so, you know, I think the messaging we were getting is, this is good enough, yeah, it sucks, but you're going to have to write like, you can, you can. You don't have to stay, you know, you don't have to split the nights. You don't have to have diabetes be in the forefront, like, let her a 1c be higher, and then write it out till she's older, and then it'll be easier. Was like, the messaging we were getting and I think it would have been, I think there was a part of me at that time was that was almost like, well, I guess that's what we have to do. But then I don't think I would have stayed there, to be honest, like, I think I, at some point I would have gotten to this. But really listening to that episode was the thing that really motivated me to be like, No, I want, I want something different for my family and for my kid, like, this isn't okay. I'm not. I'm not, I'm not going to be complacent here.

Scott Benner 1:10:45
I'm so glad you found it first of all, yeah, it just, it's, it's lovely, and it makes me feel good, because there are days when I'm just like, my god, I don't have to put out this much content, or I don't need to do this, or, like, maybe I could go on vacation once, you know, like that kind of stuff. But then I wake up every day or or go to bed every night and get to see somebody, and I'm not over exaggerating. It's a, it's a content creator's, uh, bullshit move to say I hear from so many people, right? They don't, actually, but that's okay. I do. I actually do. And I get to, I think in the course of every 24 hours, I get to see about a dozen or more notes from people like you. That's great, and it keeps you going. You know what I mean? Yeah, like, because it can get repetitive, obviously, but like, it really does keep me motivated and excited to have conversations like this. And I tried to explain to somebody, like, I'm very competitive about it, like myself. And they're like, why does it matter? And I was like, I think it just gives me something to like, strive towards. Like, when you get to this level, like it you you could have the feeling like, Oh, I did it. I need something to like, fight for during the day. Yeah. I need that a little bit. So

Bethany 1:12:00
yeah, and I mean, the podcast was recommended to us when we were still in the hospital. We had a friend, my husband, I met in college and got married after college, and so we had a friend from college. You know, after I had made a post on Facebook about about our daughter's diagnosis, we had a friend reach out to say, like, hey, like, I was actually diagnosed with diabetes as an adult. You need to look into the juicebox podcast. It'll be really helpful for you, kind of when, you know, when you're ready, when you have your feet under you, like, make sure you check it out. And so, yeah, like, I think we started listening, you know, once we kind of got settled in, and we were, you know, a few weeks out from diagnosis, and we were both just listening, we really wanted to get to get to a place where we felt like diabetes wasn't running the show. Yeah? Oh,

Scott Benner 1:12:44
it's wonderful for me to hear. I really appreciate you sharing that. Seriously, I can't tell you that there's, you know, like I love making the podcast, like I genuinely do. But there is even times where, like, I'll get halfway through an episode, I'm like, I don't know if this is even about diabetes. I just, I'm having fun talking to this person. And some of the episodes need to be like that, and some of them are. I listened to one the other day. I'm not gonna lie to you, I listen to my own podcast the other day.

Unknown Speaker 1:13:10
I love it. I

Scott Benner 1:13:11
was looking for something to listen to, and all the people I listened to hadn't put out content. I was like, Well, you know, who I know puts on it out today. You did. And I went and looked, and it was an after dark episode, oh god. What was it called? It was an after dark episode called Black squirrel. And I listened to it, and I was like, this, this is funny. This is like, funny, great, thoughtful. And I learned something about mental health. And I left, and I was like, the guy making this podcast is doing a good job,

Bethany 1:13:43
pretty good right now. And

Scott Benner 1:13:44
by the way, the lady that came on was fantastic, and so so willing to share her story and be honest like you are, and that's where it all comes from. Like if I had to come on here and talk by myself, this thing would have been over years ago, and if I would have done the thing that other people have tried in the past, which is just bring on people from the community, like the known people making air quotes, those people just they're full of most of the time. You know what I mean? Like, they've got, like, relationships with companies, and they're like, Hey, I'm here to talk about the and, and don't get me wrong, like, I have sponsored episodes like, yeah, you'll turn on an episode pretty soon. It's going to be a lady talking about her ever since CGM, I'm very specific about it, like that episode I didn't charge them for I just we already do business together. And I said, I think it would be beneficial if you really want people to understand what the CGM is, to have a real user on but let me just talk to her. They did that like they didn't send me a bunch of questions. They didn't say, like, ask about this or do that. I looked at the CGM, I figured out what my questions were, and I talked to her just like, I'm talking to you and you know, and so, yes, that's a business thing, but at the same time, you'll know that up front, like, it's not, like I'm not. Going to sneak it in, and I'm going to be like, hey, these people buy ads on this podcast is a great episode where this lady's going to tell you about it, listen to it, or don't, like, I don't care. Like, you know, like, it's I don't know, right?

Bethany 1:15:11
Well, I think a big piece is community too, because it's already an incredibly or it can be a really isolating diagnosis, I think especially for us with with our daughter being diagnosed so young. Yeah, you know, I try to connect with other parents in the community, and I certainly have, and I've met very I've met a lot of really wonderful people, but at the end of the day, you know, their their experiences are just not even in the area of like, what, what we're dealing with, and I'm sure they're wrestling with problems that, you know, we don't have to wrestle with right now. So not yet,

Scott Benner 1:15:47
Bethany, but you will not yet, and then you'll be thrilled to have had a contact with them. You know, absolutely.

Bethany 1:15:53
Yeah, right. But there's just so few people it feels like, at least, who have kids diagnosed at this age and even like this weight too, like her being so small and being so insulin sensitive. Like, I've met other other parents. You know, it's kind of rare when you meet someone else who has, like a toddler, and you're kind of like, oh my gosh, you're you also have a toddler with this thing. But I think even even then, sometimes it's hard to feel like there's a lot in common, because our my daughter's so small. She was already tidy before diagnosis, she was like in the fifth percentile, and then she just completely fell off the growth curve for the months leading up to her diagnosis, and she's back on track now and growing and thriving and doing a great job, but, like, we just have some challenges with her being so petite that Sure, I just don't think a lot of other people have dealt with what did

Scott Benner 1:16:48
she weigh? Diagnosis,

Bethany 1:16:50
she was 17 and a half pounds. Wow.

Scott Benner 1:16:54
Arden was 19 pounds. Yeah,

Bethany 1:16:57
they tried that. This, actually, it makes me angry thinking about it now. But the resident put in the wrong order, when, when Cora was, when my daughter was diagnosed, and they gave her, I mean, she came in, it was like, I don't know, 10 o'clock at night, her blood sugar was like, in the four hundreds. And they were planning to give her a unit of long acting to kind of start things and see how she responded. But the the resident actually put in an order for a unit of rapid acting and so she got, like, a unit of Nova log. And she didn't go low by any means, like she she kind of went down to the 80s, but she was like, in the three hundreds. And at this point she doesn't have CGM, so we're just checking her finger. And I just remember everyone being like, oh my gosh, like, kind of flustered, because I don't think that was the response that they were anticipating would have. And then they had to look into it. And then I just remember in the morning, them talking to us about it, and being like, this is a good thing. Now we know that core is really sensitive to insulin. And I was like, I don't know what you're even talking about. I don't understand any of this. I don't understand what happened. Yeah, now I do, and it makes me angry that they weren't more transparent with us. But I don't think it would be useful to do you think

Scott Benner 1:18:10
she was really that sensitive, or do you think they just gave her the wrong stuff, or too much of it?

Bethany 1:18:14
Probably both. I mean, she was in the four hundreds, and they gave her a unit, and I think initially, like some of her sensitivity, like her insulin sensitivity, factor was, like 400 and so they checked her, like, an hour later, and she was fine. But I also, like, there's a piece of me that like knowing how sensitive she is to insulin, knowing they only did a couple finger sticks, like, how low did she get? How low did she actually get that night

Scott Benner 1:18:41
they don't know. But listen, I'm gonna say something right now, and you can be upset if you want to. Mostly no one knows anything. Okay, true society is holding on by a thread. You have no idea. It works fine for some reason, like you're not. We're not going to spin off our axis and fly into the sun or anything like that. But it's all just everything just dances back and forth on a precipice constantly, and yeah, and a lot of it's just luck or the randomness of society or life, or whatever you want to call it. It doesn't really matter. Things work out. Generally, when they when the when the fringes get taxed, that's when you see the weaknesses, yeah. Yeah. And then you go, Oh, okay, this is all much more tenuous than I think it is,

Bethany 1:19:24
yeah, and I think that my job often reiterates that to me, and that's that's often what fuels my anxiety for my kids, right? Because I think that because of the work I do, I get to see just how delicate that balance is all too I hear the worst case scenarios. Well, that's

Scott Benner 1:19:43
the what I was gonna say, but you still hearing the problems. It's like, when you get on the internet and they're like, oh my god, Dexcom sucks, OmniPods, horrible. T slim piece of garbage. Blah, blah, yeah, all you're hearing is people who are complaining, oh, I just hear the worst case scenario all the time. You're hearing from people who. Are who have spun a little bit off their axis at the moment and and you know you're trying to get them back to good I always say the same thing about a friend of mine who's a police officer everybody bumps into during the course of the day is lying to him or breaking a law. And before you know it, you think that's who everybody is, but it's not. And so I would leave you with this Bethany worry is a waste of imagination.

Bethany 1:20:21
I know, I know this is what I tell. I tell patients worries like a rocking chair, right? Lot of energy. Don't get you anywhere Exactly.

Scott Benner 1:20:28
It's if something's gonna go wrong, it's gonna go wrong, and if it's not, it's not. And worrying about it is actually making something go wrong that may never happen. Yeah, now I don't want you not to be prepared. But see you do that, you have thought ahead. And that's not from worry. That's from, I don't know, it's not your anxiety that's making you think about, like, I want to bank good health now, in case she has some trouble in during her years, where she's, you know, pushing back like, that's, that's good, common sense and thoughtfulness, not anxiety, yeah,

Bethany 1:21:01
well, and I think too, right? Like a healthy dose of anxiety, not a balanced anxiety, can be motivating, can lead to you to taking those steps, being thoughtful. When that gets unbalanced, right? Is when I think it can lead to that unhealthy place. And so I think that has been, that has been the thing that I've focused on the most for myself over this last year. Of like, where is that balance at? Is this helpful and is it going to help me do the right thing, the conscientious, you know, safe thing for my family, or is it getting me to a place that's not serving me

Scott Benner 1:21:33
good for you? Hey, I by the way, I agree. I I saw something the other day from a content creator, and it made me so mad that I was like, I'm gonna try harder. Like, I know I'm already trying hard enough, but like, I have, I've have an idea. It's on my whiteboard. I should be doing it, and I'm not. I'm like, God damn it. I'm gonna do it. I'm like, because if I don't do it, then this person's gonna half ass it and put it out there, and I can't be okay with that. And like, so there's that tiny bit of anxiety about, like, I can't let them get ahead of me, and I can't and I can't let them take this thing that I've built up so well and trash it with these. What do I want to call it? Like, social media stunts that get clicks, you know what I mean? So, like, I'm gonna, um, I'm gonna, I'll just do it instead. I was like, I'll tax myself and I'll do it so that, so that they don't mess it up. That's very vague. I won't be saying anything more about that. That's okay, yeah. Anyway, more to come. Yeah. Oh my god. What do you say? Thank you very much. I really, really do

Bethany 1:22:41
appreciate your time. Yeah, thank you, Scott. Well, it's my pleasure. It

Scott Benner 1:22:44
really is hold on for a second for me, okay, okay, sounds good.

A huge thanks to Dexcom for being longtime sponsors of the juicebox podcast, dexcom.com/juicebox, head over there. Now get started today. This episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes. The episode you just enjoyed was sponsored by Medtronic diabetes. Learn more about hyperglycemia and what you can do about it at Medtronic diabetes.com/hyper if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective the bold beginning series from the juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player, or you can go to juicebox podcast.com and click on bold beginnings in the menu. I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The juicebox podcast. The episode you just heard was professionally edited by wrong way recording, wrongwayrecording.com.

#1324 Weight Loss Diary: Fourteen

Fourteenth installment of my GLP journey

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome back to another episode of The juicebox podcast.

I am back to talk more about my weight loss journey today is I don't know how many injections worth here, 1234567, about eight injections worth of content. My thoughts over these past two months, it's been a bit of a slog. I'm not gonna lie. 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. Don't forget to save 40% off of your entire order@cozyearth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40 percent@cozyearth.com 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. 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/juicebox, this episode of The juicebox podcast is sponsored by the Eversense CGM, an implantable six month sensor. Is what you get with Eversense, but you get so much more exceptional and consistent accuracy over six months and distinct on body vibe alerts when you're high or low on body vibe alerts, you don't even know what that means. Do you ever sense cgm.com/juicebox, go find out. Hey guys, listen up. It's Wednesday, August 14. You missed me. Take my last shot because I was on vacation. I'm taking this one now. All I can tell you is I'm already a day late. I took it on Tuesday last week. It's Wednesday this week, I went on my first family vacation in like six years. Did not, I think I gained like a pound the whole time I was there, which is awesome. So a lot of food, but I felt really good. Came back, put a couple pounds on last couple days. I couldn't figure out why, what was happening, and now I realize I'm eating more, and I'm eating more because my injection got moved from Saturday to Tuesday, and so the last couple days, I was waning with the medication, and needed to inject yesterday, and didn't even realize that I just lost track of my days. So I think I was just without the Med, and it led to everything. I was 186 this morning. Let me give you a tiny bit of context for that. If I can hold on one second, I was as low as 182 four on the 20 God, I get my glasses. I know every time I do this, I'm sorry, 25th of July was 182 for my wedding ring was flying off my finger. I was so at such a low weight, 182 four still on the second of October, August, left the next day for vacation on the third, didn't return till the 11th. When I returned on the 11th, I was 184 eight. I was super excited about that. But today, 186 in fairness, My God, how do I say this? I haven't gone to the bathroom today or yesterday. I think I'm readjusting. I don't think I'm going to be 186 for long, but I don't know. I think getting back to 182 shouldn't be much trouble. Here's where I'm going to shoot this. I'm taking off the cap, unlocking the pen, 12.5 milligrams of zepbound. Let's put it right here. We're all done. I'll see you in a week. Hey guys, oh. August 21 I just got back from hydro. 1400 miles in like 36 hours. So the long and the short of it is is we had to go pick up Arden stuff from her school, because she's leaving one college and going to another one, and we had to get the stuff out of there. So we left on a Friday afternoon around five, and I was home seven. Monday night at 1am and in the middle, drove 1400 miles. More importantly, in the middle, I ate at gas stations. So I'm 187.4 today, and there's really not a lot more to say. So I'm going to shoot my zepbound, and then I'll be back in a week where I hope I have better news, where I'm not driving just it's insane. We drove 14 hours one way, 14 hours the other way. Slept five hours on the floor of a room and four hours somewhere else, and then through a monsoon. And I think I lived on Doritos for like, a week. I just, it was a last minute trip I wasn't able to plan for. It's not an excuse. It's what happened. Sucks. I'm moving on setbound 12 and a half. That was the cap. This is the injection, little bit of pressure there with that one lost the drop. Talk to you soon. Welcome back to Scott doesn't lose weight. It's August 27 I know you heard me talk about a 1400 mile trip in the last one this week, it was only 650 miles as we took Arden to our new school. But round trip took up about four days of my life, moving her in and out. Lot of restaurants, I have to say, a lot of eating in the car. I have not figured out how to do that. Well, woke up this morning. Weight was 187 I need to wait. I'll tell you. I don't want to say this. So in the past, I think I said I gotta exercise more. Is a way to try to motivate me to do it like I felt like, oh, I said it to you. Now I'm gonna do it, but I said it to you and I didn't do it. So I don't want to say it again next time I come back, I want to tell you, you know, I've got an exercise routine going, and I'm doing it. I don't. I want to throw it out there again, like that. I really disappointed myself, if I'm being honest, 12.5 zepbound. I mean, listen, truth be told, I've done a ton of road eating and restaurant eating in the last couple of weeks. If this would have happened without zepbound, I'd literally be 10 pounds heavier. So, I mean, a pound or two, I'm not sweating it, but I definitely, I've seen myself at 183 I've seen myself at 187 there's weight to lose there. You know, I'd like to get down to, I'd like to get down to somewhere where I feel healthy in every aspect of my life, and every part of my body looks healthy, meaning I'm not carrying fat that's gonna hurt my heart or my life or whatever. 12.5 here we go. Give me a good spot here. All right, it's in kids. I'll be back September 4. I'm a day late because I had to go pick up my meds yesterday and couldn't get back here in time to use them. Skeletal muscle mass is up. Body water is up. Body fat is down. BMI slightly down. Good stuff. My weight today, 180 4.8 is that road food? It ain't good for you. That's my takeaway today. I don't have much more to report. I'm a little behind on my work, so I'm gonna shoot this and get back to making you a podcast. Ready, cap off, lock off, find a spot that looks good. Here we go. Felt right. Little drop wiped off. It's dark in here. I'm still going. Still going for the trash can. You ready? Nice.

This episode of The juicebox podcast is sponsored by Eversense, and Eversense is the implantable CGM that lasts six months. Ever sense. Cgm.com/juicebox, com slash juice box. Have you ever been running out the door and knocked your C jam off, or had somewhere to be and realized that your adhesive was about to fall off? That won't happen with Eversense, ever since won't get sweaty and slide off. It won't bang into a door jam, and it lasts six months, not just a couple days or a week. The Eversense CGM has a silicon based adhesive forge transmitter, which you change every day, so it's not one of those super sticky things that's designed to stay on you forever and ever, even though we know they don't work sometimes, but that's not the point. Right? Because it's not that kind of adhesive. You shouldn't see any skin irritations. So if you've had skin irritations with other products, maybe you should try Eversense, unique, implantable and accurate. So if you're tired of dealing with things falling off or being too sticky or not sticky enough, or not staying on for the life of the sensor you probably want to check out ever since, ever since cgm.com/juicebox links in the show notes. Links at juicebox podcast.com. Hey everybody. I'm going to multitask here. I'm sorry. I'm going to do some cleaning up on the Facebook group at the same time as I talked to you about this, today is September 11. Oh, wow. 2024 going to do my injection today. It's been a week since the fourth when I was 180 4.8 I don't even know if I remember to say that last time, not certain. But anyway, there's like, a little cottage industry on Facebook where people take some picture of like, like, diabetes supplies. Then they write something like, oh, I have extra supplies if you want them, just, you know, direct message me and, you know, you just cover the postage. I just want you to have them. I'm like, they're all scams. They are all scams. Okay, Facebook actually is getting really good at seeing them and saying, no, no, no, and not letting them even post. But then you have to, I mean, I have to block the account. So let's see here, telling you the name's not important because they're not real people. They're not real accounts. They just make these accounts. Try to get people to send them 20 bucks for shipping. See if they can get that accomplished a few times before they get caught, and then they're on their way. They make another account and do it again. It is, like I said, a cottage industry so block, so we'll delete the recent activity. Make sure that that they say you can ban future accounts. But I don't know how well that actually works, so you click off all that and double check. I can't believe this is my life band. There were three band this morning. Actually caught one of them yesterday. Then I saw them pop up, like on a Dexcom user group, and I was like, oh, it's the same one. I just banned that one. So then we'll decline the post. Now, the post nobody saw, but it's gone. None of this is here, nor there. This is very behind the scenes, boring stuff. I got my zepbound today 12.5 it's Wednesday. I am going to shoot today. Uneventful weight thing, I was 180 4.8 last week when I did it today. I'm 180 5.2 it's, you know, point four more. It's, you know, negligible. Everything's pretty Yeah, none of these, none of these Trackables, are moving just a week. Had a lot of family stuff. This week, I'm getting settled back in after moving my daughter off to college, so that's good, but I'm gonna shoot this. I'm going to submit my stuff for my talk this weekend, and then I'm going to record an episode, actually, in about 10 minutes. That's pretty much it. Hope you guys are enjoying this. Actually got some more great feedback from somebody the other day about this episode, about these episodes, so I'm glad you're liking them. This person was motivated by the by this went off. Did it themselves? Lost like 70 pounds. It's crazy how well they're doing. There goes the cap. There goes the lock. Ready? You heard it in there. I got a spot that looks accessible. 1234, here we go. Kids, that one had a little pressure, not bad. Little drop at the end. Actually name it a drop like fuzzy bubbles. Fuzzy bubbles, all right. I I missed the goddamn trashcan All right, so, yeah, the trash cans three feet from here. I just want to be clear. Good morning, friends. I'm a day late. Today is September 19. I've got my 12 and a half milligram. Is that bound pen here? Can tell you a tiny bit about my last week, and I'll go over a little bit about my weight. I spoke at an event this Saturday, this past Saturday, excuse me, that I speak out every year, touched by type one in Orlando. And I guess last year, they made a video. And. And I I ended up in the video. So this year, well, let me go back. When I was there last year, I had lost some weight. I don't know how much anymore, maybe, like, 15 pounds or something. When I got there, people were like, Oh my God, you look crazy. Like, this is amazing. And you know, I felt amazing like being up there on the screen, being up there on stage and everything, I felt super comfortable. It looked different, like significantly different. Felt different. And then a year later, I go back and they run this video from the year prior, and my I'm on the screen for a second in the in the beginning, in the morning, and I look and I think, Wow, look how heavy I am there, much better than I was 15 pounds before that, but nowhere near where I am now, this little eye opening met a lot of people that I see every year, but only see once a year. There. You can really see it on their faces when you see them immediately. And while I was there, I met a man who said that the year prior we had met, and he had asked me about my weight loss that prior year, and I told him what I was doing, and he went off and did it and and a year later, we met again last week, and he had lost 80 pounds. I was so genuinely happy for him. I don't I just want to bring that up anyway. I get dehydrated when I travel. I'm starting to realize, because this morning, I'm 180 661 86.6 and which is cool. That's fine. I think last week. What was it? The 11th. I did this last week. I was 185 two. On the 12th, 185 four, but then I got back from the trip because I didn't take my weight for a few days when I returned from the trip on the 16th, I was 180 2.6 but I was positive I was, um, dehydrated at that point, and I missed the shot yesterday when I should have taken it. And I'll tell you, I had, like, a big lunch. For me, you're gonna laugh like I had a deli sandwich, but I ate the whole thing, so I expected to have a little more weight this morning. I haven't gone to the bathroom today yet, but I'm 186 six today. Gonna take my shot right now. Get Moving on the day. I'm gonna try to put it in my butt cheek today. Somebody asked me at the trip. They were like, they're telling me about their GLP. And they're like, I put it in my in my butt cheek all the time. And I'm like, I always put up my belly and I try a Bunche. And I was like, I've done it before, but alright, so I promised them I do it again, which is a weird thing to promise somebody, but here we go. I have to stand up for this one. I'm going to tilt the microphone down towards my butt. This is harder to do. God, I hope no one walks in here while this is happening. All right, buttreat. Unlock the pen. Apparently I was supposed to wake up now. Sorry about that. Apologies. All right, it's hard to pinch the do it backwards? Hold on, this is ridiculous. I'm so glad you can't see this. I'm kind of glad I can't say it ready. Ooh, little, pressure filled. All right. Well, that embarrassment is over. See you next week. What's up? Everybody? Wednesday, September 26 I'm going to do something a little different today. I'm

going to use up some older doses. So I have a five and a seven and a half here, 789, 1011, 12, five and seven and a half, or 12 and a half. Boom, bang, bang. Look at this. Go. I'm gonna have to hit it twice. I'll do one. I'll tell you a story. Then I'll do the other one. Let's put one on my belly. Do the seven and a half now. Cap off. Unlock. Hmm. This side. Ready. Hold on. I'll move the mic for you.

That wasn't bad, okay, trash can, which I've moved closer to me now, my story in the last seven days, the amount of people, the number of people, the countless groupings of folks who have been telling me that I look younger, is awesome friend I haven't seen in a few months. Sat down, had breakfast with her. I. First thing she says to me is, my God, you look younger. You look good. And I was like, Oh, thank you. And I really did. I was like, Oh, it's fine. Like, you know, like, everything's like, I was very like, I don't know what. I played it off, I guess not, but not in the way where I was, like, pretending. I really felt like, it's okay. We don't have to talk about this, you know, like, I don't look better than anybody else. I've just looked better than I did, you know before, probably. But she goes, No, no, you don't understand. You look good. And I was like, Good. And she's like, good. And then I was like, Oh, she's not just saying, like, you look smaller. And she went on to talk about, I can't tell how old you are. I was like, Oh, that's so nice thought. Nothing up later in the day, I was in a store with 1234, kids working at it. They were like, high school, almost college kids, you know, like seniors at their after school job walk in buying something. Kid looks at me and says the craziest thing. She goes, You look like Bill Nye the Science Guy. And I went, I don't think you know who Bill Nye is. She goes, so definitely that's who you look like. So I'm like, I think you're so we all pull out our phones. Kids have phones. We have phones. We're all phones out. We're all googling Bill Nye. Show her, Bill Nye the Science Guy. She goes, yeah, like, see, you look just like him. Now listen, between you and I, I don't like anything like Bill Nye the Science Guy, which is fine. He's a fine looking gentleman, but he and I do not resemble each other. Then we come to realize that I'm wearing a piece of clothing, which it was a jacket. And she's like, See, you're wearing a jacket, like Bill Nye the Science I'm like, Oh, see, facially, you don't think I look like him? Oh no. Who do you think I look like facially? I said, Here's what I usually hear, I tell them, and then they start pulling up pictures of Vince Vaughn. Like, oh my god, you do look like Vince Vaughn, blah blah. Like, everybody's going crazy and everything. And that was the end of it. And I said something about my daughter is a little older than you guys. I don't remember how the conversation got there. And the one I look over at this one kid, this big, tall boy, and he's just like, he's got this incredulous look on his face. I'm like, what's wrong? And he goes, your daughter's 20. And I said, Yes. And he goes, I don't understand. How old were you when you had her? And I was like, Oh God, I don't know why. And then I realized what he was saying, and I was like, Is this happening again? Hello. I said, How old do you think I am? Now, listen, these are kids, so, you know, we have to undercut their you know, they think 40 year old people are, like, 110 so he goes, I don't know. Man, like 35 and the girl next to him goes, yeah, like 3538 and I started like, Oh my this is gonna be the best part of my day. So I whipped around the room like anybody else, they're all guessing late 30s and everything. And I was like, I am 53 my 20 year old is my younger kid. I said, my son's almost 25 and they were just like, No no, no, no. And so excited. I was like, Oh, this is awesome. Thank you. And then I do a live on Facebook, and people are jumping in and be like, Oh my god, Scott, you're reversing. And your age is like, you're, I think you're aging backwards. I'm like, am I looking younger? But I don't think it's younger. I think it's healthier. Like, I just think that I don't look weighed down by poor health, is what I'm starting to think of it as. Anyway, I don't think I look younger. I'm sure that a person my age would look at me and go, Oh no, you're 53 I can say it, but it's nice that people are having that reaction like it's pretty cool. So today's weight, I'll tell you the whole week actually, my glasses, very quickly. What was I the 19th? We did this last I was one. What was I on the 19th? 186 six. Is that what I said in the last recording. From there I went, 180 461 80 441 84 eight. Then on the 25th was that yesterday, I was 183 six, a cognizant, cognitively, drank a lot this week. I'm gonna keep that up, even though yesterday I was running around all day, as you could tell out. I had a breakfast and diner with a friend. I stopped at a place we eat pizza for dinner last night, woke up this morning, haven't used the bathroom yet. 185 even. I was excited about the 183 six, because I was drinking so much liquid and eating a lot of protein this week. And I really thought, like, this is it? But that pizza came in last night and I said, I am gonna have some pizza. So anyway, I'm 185 today. That's 1.6 pounds less than I was last time I spoke to you. My my low this week was 183 six, my BMI over 27 still. Body fat is steady body water. Steady, skeletal muscle mass, steady, BMR, steady. Everything's very steady. Fret free, body weight, steady, subcutaneous fat, Oh, wow. It's down to 21.1 but steady, my visceral fats at a 10. It's awesome. Give you some idea where that started. It started at 17 a year and a half ago, when I did this, my muscle mass is super steady. 133, two started off at 144, I lost some obviously, but you lost a lot of weight. Expect that bone mass, steady, protein, steady metabolic age says 55 what are those? What is? What is this thing? Now I'm gonna go find you some 18 year old kids. Think of a 35 anyway, doing well, hope you are the same. Gotta put this seven and a half in, or the five in. I put the seven and a half in the one side of my belly. Am I just gonna put it in the other side of the belly? Although I had it in my butt last week and I lost weight. But I can actually mean anything, but, oh well, you know what? Screw it. I'm gonna do it. I that's completely, you know, there's no way that could be a thing. But I'm gonna do it anyway. I'm gonna put the five in my butt, cap off, lock off. How am I gonna put my pants down? Alright, I'm standing pants. Move the uh, move the microphone. It's very hard to find your butt sheet. All right, I'm just gonna guess this is okay. Is that what I'm gonna do? I guess so, ready.

Oh, I didn't like that.

I didn't enjoy that. All right, I'm gonna go see you October 2. It's a Wednesday. I'm back. I have a 12 and a half set bound here to shoot, but before I do, I'm gonna philosophize for a second. I let me sit back.

I feel like I'm back where I started. That's how I feel in in this regard, if you would have taken me back to before I began this whole thing and told me, like, you know, what's your need for? Weight loss, body change, health change, all this stuff, I would have been like, I'm okay. You know, I feel fine. This is good, where I'm at, and then, like, I've gone over before, like, you know, you drop 10 pounds, you think I feel better, I look different. It's weird. And then it keeps happening. You know what I mean, 10 pounds, 20 pounds. I've been lucky. I lost more 30 and along the way, at every stop, you could see, okay, this is good, but there's more like I'm not there yet, and at this moment, I'm not there yet, but I'm so good where I am that it's gotten me back to that feeling of like, this is okay, like when I sit and talk about it, I know this isn't done, right? There's, you know, fat in my midsection that needs to go from my own health and, you know, my longevity, etc, but I just like, it's hard to get excited about it, because I'm good where I'm at. I'm just not where I need to be. Except I'm thinking about that now and realizing that that's how I felt two years ago. And I guess I'm here to say I'm looking for the I need, the motivation, the momentum build again, like that excitement, like, let's get this thing going. Because, like, little stuff, like, I don't know, just, you know, not exercising the way I should. Just not I want to be, I mean, to be notes to myself everywhere I say I'm going to just can't get the zoomed up to go and do it. It's really important, and I just am not doing it. So I don't really know what the answer is. I can tell you that without the the GLP, it would go backwards very quickly. I know my hunger would return, like, pretty quickly. But just the other metabolic impacts that I'm getting from the from the from the magic juice here, like, I mean, absolutely necessary. So I shouldn't just say that I'm okay with where I'm at. I am happy with where I'm at. I know that there's more to do. I don't know how to find the excitement to get it accomplished. That's gonna be on me. Obviously. I. I guess for now, we just kind of keep going and be okay with this lull. Like, I think I just have to be okay with this lull, meaning, like not to beat myself up over which I'm not. But I just, I think I cognitively have to not beat myself up over this, not get and not get so comfortable in this lull that I never get out of it again, that I'm just like shooting the medication and sitting at this weight over and over, which bounces around a couple, you know, pounds, one way or the other. I think I'm 186 this morning. I don't know that most people could tell the difference between me at 183 and 186 so that's not really the point. The point is just that I'm not moving towards, you know, my ultimate health goals. I'm gonna shoot this whole 12 and a half into my belly.

There. It looks like a spot. Is that gonna be good? All right, yeah, okay, who am I talking to? By the way, I'm not even sure. It's so weird not to know how you guys know, but it's so weird not to know how it's gonna feel when the thing injects so All right, here we go. I didn't unlock it, all that talking, and here we go. Oh, that was good. That was the soft underbelly of my belly. All right, so I'm gonna put this one out. It's not downbeat, but right in that trash can, like it was nothing. I don't feel I don't feel like beat down by any of this. I'm just becoming aware that I think I'm back where I started in my head, which is, like, this is fine, this is good. I'm okay, and I need to find some better motivation. I think, I think, I think some of the steps to that would be meal prepping better, which I haven't been doing lately. I've been eating on the go. I should be meal prepping better. And I don't know how to get myself excited about I've just never been a big exercise person. Like, it's just not I don't mean like, nobody likes exercise, I don't think maybe some of you do, but I'm just saying like she's never been a big part of my life, but I guess it's gonna need to be, or this is where I stay forever. All right, let me try to figure that out. I'll talk to you guys later. Thanks for listening. By the way, I got some great notes this week from people about this series, and I really appreciate it.

Speaker 1 32:42
You. I want

Scott Benner 32:49
to thank the Eversense CGM for sponsoring this episode of The juicebox podcast learn more about its implantable sensor, smart transmitter and terrific mobile application at Eversense cgm.com/juice, box. Get the only implantable sensor for long term wear. Get ever since. 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

if you or a loved one was just diagnosed with type one diabetes and you're looking for some fresh perspective, the bold beginning series from the juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player, or you can go to juicebox podcast.com and click on bold beginnings in the menu. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The juicebox podcast.