#1105 Adam's Song

Adam's type 1 daughter was diagnosed at 9 months old.

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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
Hello friends and welcome to episode 1105 That Juicebox Podcast

Adams two year old daughter was diagnosed at nine months with type one diabetes Addams family has a history of autoimmune conditions. Adam has three sisters one was celiac one with graves, and the other with Hashimotos. Adam has just tested positive for celiac, and they've had his other son tested as well. Most recently, Adam has a Hashimotos diagnosis of his own. While you're listening today, please remember 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 healthcare plan. Or becoming bold with insulin. I wouldn't normally tell you this, but Rob edits the podcast from wrong way recording. And he gives me a notepad of like his interpretation of the show. And I use, I don't want to give it away, but like I use some of his words, and I'm introducing the show and stuff like that all the time. But I just realized here he said, This is a very cool and interesting story. Adam did tons of research got a CGM before they left the hospital and tiny he goes, Rob goes on and on here. But anyway, Rob thinks this is a great one. So I hope you do too. Also use my link drink ag one.com/juice box and save 40 percent@cozier.com with the offer code juice box at checkout. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us met

Adam 2:08
my name is Adam. I have a two year old daughter who was diagnosed at nine months old so that was about a year and three months ago. I also have a son who's four years old so yeah I think that's

Scott Benner 2:22
your your daughter's the type one your son have any autoimmune stuff.

Adam 2:27
So my son doesn't he actually got tested for celiac disease and has the antibodies but he hasn't he didn't have like the positive markers yet so it's like one of those things where he might become celiac at some point but we're not sure Yeah, okay. So I guess that leads me into after Brynn was diagnosed and kind of dug into like the autoimmune history our family and found there was a lot more than than we thought. So my sister has celiac my three sisters so one has celiac and like my other sister has Graves disease and the other one just found out she has Hashimotos so like a few months after Brian was diagnosed, I tested for celiac and thyroid and my celiac test came back positive. So now I am a celiac for like almost like it was like last November. And then my my thyroid levels came back in range. But then like after listening to your, all your episodes on thyroid, the in range value was like I think put it down like 2.3 and I had some nothing like really serious symptoms, but I had some things like after listening to all the symptoms and like reading more about it or I was like, Okay, I'll probably check on this later. But I didn't I didn't follow up because I had the celiac diagnosis and I had to get like the endoscopy scheduled and all that. But then like five months after that I tested thyroid again and it was like 3.25 So I was like okay, I'm I'm feeling some of these symptoms. And I got I got officially diagnosed with Hashimotos like in February this year. So like four months ago,

Scott Benner 4:00
I had a slightly over two TSH, come back the last time I had bloodwork and there's actually a script downstairs, I have to go get blood work done again. They're testing it one more time. So I'm not sure what

Adam 4:12
yeah, it was 2.74 and then 3.35. And then I was like okay, I want I want to get this treated because the the biggest symptom that was scary was I was starting to like just stand up and feel like really nauseous like kind of like dizzy or lightheaded. And I was like, Okay, I don't want to be like carrying one of my kids and just like collapse or something. So i i Finally it was like I gotta take care of myself a little bit and get this figured out for you. But I have been I've been adjusting the dosage. So I started on 25 like fmcgs and I'm on 50 now but like every six weeks we're adjusting and slowly going up.

Scott Benner 4:47
Are you noticing your symptoms lessening? Yeah,

Adam 4:51
I think that like the dizziness nauseous one that was like the scariest one that one. I think I had like one spell since I started the night. Vacation. So it used to be a little bit more frequent. There's a lot of things that are hard to tell if it's like the celiac or the thyroid because I, I was gluten free since November, and I started the thyroid medication like middle of February. So there's like some symptoms that overlap there. I have like, really cold hands and I had like dry hands. And I usually got like pretty bad headaches, like quite frequently, like maybe like once, once or twice a month. And those really have subsided, so I don't have a lot of those anymore. But it's I wouldn't say I had like serious symptoms for either one. It was just like a bunch of minor stuff that like, it was just normal to eat because I think like, you just kind of live with what you have. And yeah, other priorities kind of got in the

Scott Benner 5:43
way if it wasn't for brings diagnosis, you would you have ever looked into this, do you think?

Adam 5:47
For sure not like, I think maybe the gluten thing like I, my wife has probably said something in the past, like maybe you should get tested out like, but I never had like, what I never thought I had serious symptoms. But once I cut out gluten, like I started noticing a lot of like, a lot of things get better. So it was like, it was just normal for me for a long time to just feel that way.

Scott Benner 6:11
And can I have some specific examples of that? How did you feel?

Adam 6:15
I guess like after eating, I would feel full like what I would describe it as just feeling really full sometimes. And it wasn't like every time I ate but I would just kind of feel like uncomfortably full. And I guess that's like one of the big symptoms like I always read it as feeling bloated. I I don't know if I like downplay the symptoms, but I never was like, you know, I have to go sit down or something because I'm so bloated. And like after Brennan was diagnosed I talked to my sister about celiac and she she had much more severe symptoms like she would get rashes and she would feel like so full she couldn't. She couldn't like she'd have to go lay down. So I never had anything that severe. What

Scott Benner 6:52
kind of so yours was just feeling full, but you didn't have like, what have you noticed clear up since you've cut gluten out?

Adam 7:01
Oh, like, bowel movements definitely gotten better. I know this kind of kind of weird to talk about but I don't mind. So. Like the the kind of like texture of the poop. I don't know. There's something I don't know if you ever heard it called like a brown marker poop. It's like where you just keep wiping and it seems like you're just wiping a marker. Sure. So that was like kind of normal for me. And in one of your episodes, you actually talked I think it was like Arden's friend or something. Talked about having a ghost like a ghost poop or a ghost wipe your butt or something like that. Yeah. So I don't, I don't think I ever had that. Like before I stopped eating gluten. So when I like first had that I was like, Oh, wow, like, I don't need a white. Like this is like cool. Like, so like that was like something? Like, I just thought it was normal. Like it had just always been that way as long as I could remember. Okay, I want to now it's like much, much better.

Scott Benner 7:59
I want to give Assange that credit. She calls it a spooky Dookie. Oh, spooky. Do you have to start using that because there's nothing there. I mentioned ghost. At some point. I might not have done a good job. The first time I talked about it just popped into my head. Exactly. I can hear her voice. You know, because you wipe it there's nothing there. Yeah, that's spooky, dude. Yeah,

Adam 8:19
so that like, I guess that's supposed to happen a lot more than it did with me. I just like hadn't remember that happening before. But it's kind of crazy that like, he just, it just becomes normal for you. And you just you don't know what's different, really, because it's not something you like talk about all the time. And it wasn't like I had, like, every time I went to the bathroom, it was like 20 wipes. It was just like, you know, it was always like a handful. And it was just never that good. So it wasn't like diarrhea, like runny or anything. But it was just like, you know, kind of sticky and soft.

Scott Benner 8:49
Yeah. Now I understand you're saying like you're trying to wipe off a marker.

Adam 8:53
It still happens. Like I think I have a gastroenterol hydrologist now and she thinks like, I might have to try cutting out dairy or something because I might like celiac blood levels are still a little bit elevated. But it's kind of hard because I have young kids and we don't we don't like stop gluten for them. So like there's a chance of cross contamination and, and all that. So just trying to pick apart all of that stuff and see like, what's the cause there?

Scott Benner 9:18
Do you have any improvements with like energy or clarity, mental clarity, anything like that?

Adam 9:26
Maybe a little bit mental clarity. I'm always getting like not enough sleep with the kids. So like, I've always had a little bit of sleep deprivation, but I think I think I definitely have less like brain fog. Yeah, it's kind of hard to quantify and also add a little bit better also

Scott Benner 9:46
all Yeah, also your TSH is moving up so you might not you might not know exactly what clear feels like yet, but you sounds like you're getting close to it.

Adam 9:55
That's the hard part and like I also lost like 15 pounds out of nowhere, like right around the celiac diagnosis. So I don't know if like something triggered for me and like the thyroid started kind of going out of whack faster or something. But there was like a brief thing where I lost like 15 pounds in like a one month timeframe without really changing my diet. And it was like before I had fully cut out gluten because I had just gotten the diagnosis. Okay,

Scott Benner 10:21
I've seen people get hyper before they get hypothyroid. So like, they also lose a bunch of weight, like while their thyroid is like going wonky. You know what I mean?

Adam 10:33
Yeah, that could be Yeah. But then like my thyroid level, I checked in August, and it was like 2.7. And I lost all that weight in like October, before the before I cut out gluten. Yeah,

Scott Benner 10:44
it can, it can hit you so quickly. I've seen like, right before we right as we were diagnosing my son with Hashimotos. His thyroid went from like in the twos to like in the sevens. And then they did a repeat test, and it was back down lower again, but not that high. And it was it like so it kind of I don't want to say dances around but like it's almost like there's, like fits and starts and stuff as it's kind of like happening. And I've seen some people I've seen I'd be very specific. After Kelly had Arden I remember joking with her. I'm gonna have to get you like pregnant a couple of more times because you look like a supermodel. And like it just like after, which was weird. Like she just had a baby. And she was just so lean, like afterwards. And it was I think she got hyper before she got hypo. And so she Yeah, and I

Adam 11:38
weighed in there. Like, that's weird, because that's usually the opposite like not Hashimotos that's usually the graves are right. thyroidism

Scott Benner 11:46
Yeah, I wonder if it doesn't bounce a little bit while it's settling into his new normal. Anyway, that was very dropped.

Adam 11:52
I dropped like that. 15 and I've been staying like pretty steady for the last like five months. So just kind of weird that it happened. Oh,

Scott Benner 11:59
no kidding. Well, yeah, I mean, that was not very technical. And I'm not a doctor at all. So bla bla bla. Yeah, of course. Okay, so anything on your wife's side or she like an island over there going, Oh, I'm all on here. Nothing's happening to me, or does she have stuff? Nothing

Adam 12:15
like super serious? Her? Her dad got his grater removed. So there's some thyroid stuff. But nothing that like really stands out. Okay. on her side. It's like my family has like a whole like laundry list of autoimmune stuff. And hers is mostly mild compared to that.

Scott Benner 12:34
And you're originally from the middle of the country.

Adam 12:38
Yeah, Wisconsin. Okay. So when I yeah, that's where all my family's from.

Scott Benner 12:42
Got it. Okay, so your daughter is diagnosed? She's nine months old? Or nine months ago? Yeah.

Adam 12:47
Nine months old. So like a year and three months ago? I think it is how did that present. So it came on really fast. We thought she had was like flu like symptoms, almost like she, she had a little trouble breathing. She was really lethargic, like wanting to sleep the whole day. And it was just like, in the span of a day. So like around I think like around lunchtime. We noticed like something's wrong. And I we thought it might just be the flu. We've been getting like sick on and off a little bit. She was having like a hard time breathing. But it was it was weird. It almost sounded like she was congested. But she wasn't congested. Like she could you could breathe clearly. But she was doing like those kind of heavy, heavy labor breaths. Yeah. So we, you know, we did that a rest for most of the day. And then it got to be like around 10pm at night. It just got like, way worse really fast. So like, her breathing was much more labored. You could tell she was like, struggling to breathe. Her lips actually started turning pale. And that's when we were like, Okay, we gotta like, we gotta go to the emergency room or do something. So we took her. And this was like, after we had put my other son to bed. And we don't have like family nearby that can like come and watch the kids. We had to wake, wake him up, get in the car, take them to the ER, take her to the ER. And you can only bring in like one parents. So I stayed in the car with my son and my wife went in. And I think like pretty quickly they did a blood draw and found the glucose I think it was 802 So she was in decay. Her veins were like so small and shriveled that it was so hard for them to get the IV in I remember like it taking a long time while she was in the hospital. But we went to the ER by her house and they they diagnosed it and called the Children's Hospital. And they couldn't actually give her the insulin because they they had to do like a dilution and they needed like some something like potassium or something to help slowly bring her down. So we had to she had to take an ambulance from from that er to the Children's Hospital. And then I guess that's, that's most of what happened. She stayed in the ICU for three days. Like slow We tried to level her out. And then we spent one day in like the Endo, the regular endo department. And then she went home after that. Wow, pretty quick. Yeah, but it all it all came on really fast. Yes. It was not expected at all. Well, when

Scott Benner 15:12
you said she was breathing oddly, so those are those who small respirations? Probably. Yeah. And then

Adam 15:18
shortly after, after learning more about it, that's exactly what it was. Yeah, I

Scott Benner 15:23
thought I thought for sure. You're gonna say she had DKA. Then when she got there, but they got her out of the hospital pretty quickly.

Adam 15:30
Yeah, I think it was for four days total. Maybe we got there like late Sunday night, I believe. And she went home on Friday.

Scott Benner 15:38
Nine months old. What could she have possibly weighed at that point?

Adam 15:41
I don't know. Maybe like 18 pounds. Yeah. 20 pounds.

Scott Benner 15:45
Did she lose any weight?

Adam 15:46
But the weird thing is she hadn't she hadn't gone backwards. Like she had continued growing the whole time. And her agency diagnosis was an eight so quick. Like it was a really fast onset. Yeah,

Scott Benner 15:58
fast onset, right to decay, like zoom like that. Looking back. And

Adam 16:03
it was like the day before she was completely normal and fine, like running around? or crawling around, I guess. Yeah. She was like a very mobile baby.

Scott Benner 16:10
That's something okay. So now, I mean, at that weight. How do they? I mean, how did they even describe to you what you're supposed to do? So

Adam 16:19
they gave her she's on diluted insulin like a you 10 mix. So 10% strength. And she got thankfully, she got the Dexcom G six before she left the hospital. But they give you like, these conversion charts, which is basically like if she, if her blood sugar is like X amount, then use this. It's like a correction factor. But before they really teach you how to do the math, they give you like a chart that's like if her blood sugar is 200 Give her like this amount of insulin, right? And it's all like using the diluted insulin factor. And then you just kind of she was on 11 year for basil. And the original dose they gave I think was too much in the morning and not enough at night. So we had to kind of tweak that over time. But yeah, it's it's they don't they don't help you a whole lot. They just kind of give you the the conversion chart and say like, when she eats this much, they just like guessed on her carb ratio in the beginning. Yeah. And we went with that. But at the time, she was like, she was only eating like 10 carbs a day, maybe like she was still breastfeeding. She was never, she didn't really get into the solid foods that much. So that was like one. One thing my wife noticed before she was diagnosed and we talked to like her pediatrician about it. She was never like, my son was super into food. He would eat like crazy amounts by nine months old. But my daughter was a little bit slower on the solids. But yeah, I think that's that's kind of what they tell you is Yeah, it feels like the initial doses, and you have to adjust it. Yeah,

Scott Benner 17:46
it feels like they're giving you just like the hospital, like what they would do if you were in the hospital that like Well, yeah, for sure.

Adam 17:53
And it was like, correct. Unless she's above like, 280 or something. Sure her body is so sensitive to insulin. Yeah. And like we we quickly realized that was like not good enough and try it. Try to get better.

Scott Benner 18:05
I see. Yeah, I just I had an experience recently with someone in the hospital who was using insulin. And the idea was, if they hit this number, then they get this much insulin. And I saw one time, whatever the number was, you know, if there were 146, then they can have insulin. That test came back 145 Like literally, and the nurse was like, she doesn't get any insulin. And I'm like, I'm like test again. She'll be higher. You know, like, it's just you want you want her to have insulin. And I was like, I mean, I don't want her blood sugar to be 145 or 146. Yeah, the nurse didn't even understand that. The nurse is like, no, no, there's a number here. And if you go over that number, then I give you this insulin. And that's it. That was the level of and it was a great nurse, by the way, who was helping with a lot of other things, and really terrific, but when we got to this subject didn't know what they were talking about. Like, like beyond beyond the hospital and how the hospital handles it. So it's like it just occurred to me like it they sent you home with their instructions, basically what they would do if if your daughter was in the hospital.

Adam 19:11
Yeah, I mean, we had like the diabetic training that they give where you like, you practice doing like a blood figure stick and you give a shot or whatever, into an orange or whatever. So he had like the day or two of training, but it was kind of hard because we had my four year old son who is at home, and my wife was with my daughter in the hospital. So I was I was coming back to the hospital like at night after he had gone to bed and we had someone watch him. So I was like going back and forth between the hospital and I was getting like training at different time that my wife was but we figured out eventually, just Yeah, well

Scott Benner 19:44
and it's trial and error, right there really is no other way to figure it out. Yeah, we

Adam 19:48
pretty quickly like the numbers they gave us weren't working and like we were trying to go back and forth with the endo team but like I was just like we have to do like less insulin here more insulin. They're really we changed in ourselves like right away.

Scott Benner 19:59
What was the indicator that told you like you said, we knew but what showed you like this isn't right where they numbers like how did you know what to shoot for blood

Adam 20:07
sugar numbers, so we would see her she was still breastfeeding, which hits. It hits like pretty hard initially, but also has like fat and protein. So it kept her high. And she would breastfeed like throughout the night. So like she was getting milk at night and her blood sugar was like, constantly going up, we had our alarm set, like really high at that point, I think they were set to like 300, which seems ridiculous now but with with like diluted insulin, we couldn't correct unless she was above like 280 or something. So we set our alarms there and we're correcting. But we knew like the basil at night, because it's really hard to wake up a baby and give like an injection. We kind of fix that by just cranking up her basil at night. So her level mirror was given like once in the morning and once at night. So her nighttime dosage was like one and a half units and our daytime was like a half unit. And even the half unit during the day was like a little too much. I think we were eyeballing like quarter units for a while the beginning but

Scott Benner 21:01
overnight, she could handle heavier basil because of the breastfeeding.

Adam 21:05
Yeah, exactly. Wow. And she wasn't eating as much in the day. So it was like for her baby. And we are because of the diluted insulin like we can only dose if she ate like four or five carbs. Like even with diluted we like we couldn't dose for like really small meals and she was only eating like four or five carbs. So sometimes it'd be like even the smallest dose you could do in a syringe was too much.

Scott Benner 21:29
wishy growing well.

Adam 21:31
She definitely started eating better after getting insulin, it took a little while. But she She's been like on a good growth curve. Like she's always like, you know, the 75th or 80th percentile. So she's like above average weight. Which is like one of the reasons why we didn't kind of suspect something earlier. She's never like slowed down at growth. But that's that's kind of why we push for a pump so fast is because we couldn't, we couldn't give small enough dosages with with a syringe even with a 10% Insulin right. And you know, we got they got the whole story like you have to be on syringes for six months or whatever before you can get the pump. But we we really like push back and we're like I was calling like almost everyday like telling them like this doesn't work. She would have like breast milk before her nap. And she would go to like 350 or something and we don't want to like wake her up from her nap and give her insulin because then she doesn't go back to sleep. We had like a whole list of reasons why we needed it. We convinced them eventually. And got I think we got into the pump like a month after a month and a half after her diagnosis. So we have the Omnipod dash No.

Scott Benner 22:39
diabetes comes with a lot of things to remember. So it's nice when someone takes something off of your plate. You asked Matt has done that for us. When it's time for art and supplies to be refreshed. We get an email rolls up in your inbox says hi Arden. This is your friendly reorder email from us med. You open up the email. It's a big button it says click here to reorder and you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives we click on a link and the next thing you know your products are at the front door. That simple. Us med.com/juice box or call 888-721-1514 I never have to wonder if Arden has enough supplies. I click on one link. I open up a box. I put the stuff in the drawer. And we're done. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and the Dexcom G seven. They accept Medicare nationwide, over 800 private insurers and all you have to do to get started is called 888-721-1514 or go to my link us med.com/juice box using that number or my link helps to support the production of the Juicebox Podcast what what insulin did you use in it when you got it originally was using diluted? Yeah, so

Adam 24:07
it's kind of a long story but we had done a bunch of research like ourselves and we're like, even with the like the pump gives you like you can do point 05 units. Even with that with the full strength insulin it would be too much. So we we put diluted insulin and pump right away even though they prescribed us like they gave us you 100 Like Humalog and I was like we're just going to try it this way. It was working like really really well like so much better than the MDI. We were able to dose for like one or two carbs even with the the diluted insulin or the pump. Is that so that what do you tend to the pump you can actually give like point 005 units of like full strength insulin. Is

Scott Benner 24:50
that okay? Like is that an FDA?

Adam 24:54
G is not FDA approved. I'm not a doctor or anything. If you want to get Have your spiel but like the FDA hasn't approved, like, I think for the Omnipod, it says right on the side of the Omnipod, like, use u 100. Insulin, but people use diluted in it, and people use like u 200. in it. And we haven't had any issues. I was like, we're just gonna try it. And if it doesn't work, like, we can switch to you and 100. And we did try u 100. Pod later, just because like we had to go through the whole pump training and class and stuff. And I was like, Oh, they're gonna see we're using, like, way more insulin than she shouldn't because it was diluted. And they wanted us to connect like her pump to gluco and all that stuff. I guess Long story short, we, we had a lot of success with the u 10. We're trying to be really honest with our endo team. So we like told them, hey, this is what we're doing. It's working really well, we tried you 100 It it, it does, it doesn't work very well, because we couldn't, we couldn't give small doses and like her Basal rate was like the minimum point 05 per hour. Yeah, so getting like one trip per hour, you don't have a lot of room to manipulate, like the Basal rate, like it's either on or off. And once it goes in, you can't, you can't take it away for an hour, you don't have any kind of control and you're on such a small dose for like for insulin sensitivity. Right. So and with with the Utena, the pump, then it's like point five an hour. So you have, you know, a lot more drips per hour that you can kind of take away or add to. And we started looping right away, too. So we had, we had Android APS, like an algorithm running from the beginning. Having like that, that room for the algorithm to work with is super helpful. They can't really do much with it, you and 100 insulin at the pump when she's using so little insulin.

Scott Benner 26:37
So obviously, so much of this when it's a baby. And if you really are endeavoring to keep reasonable blood sugars, so much of this is on you to figure out how do you figure all this out?

Adam 26:49
Research. Like, we joined like a couple of different groups, like I think I found your podcast on Reddit, like the day after she was diagnosed. So the podcast is really helpful for like the core concepts. And then I was reading about because I'm like a software engineer. So I was reading about, like DIY looping right away, I found Android EPS. I had an old Android phones like laying around that I could try it with. So even before we got the pump, I like got the loop set up was watching like what decisions that wanted to make. So I was learning from from that as well. And there's like objectives, you run through an Android APS to like, help you understand. Make sure you understand like how the loop is working. Yeah, it's mostly on on yourself. And then when we told them, we were using diluted to the pump, like, I sent it, like on my chart message. And the next day, I got a call from her doctor. And she was like, she basically called to yell at us and was like, you can't put that an insulin pump. Like that's not safe. I had like all this data to prove like how much it was working. And I was talking to her and she she said some ridiculous things like she was like, because I was like when she sleeps like we we can't like her blood sugar is just gonna be at 300 all night because we can't doser for like small enough corrections. And she was she said something like, it's fine if she runs at 300 for like eight to 10 hours as long as it's not like longer than that. And I was like, that's not how like a pancreas works. Like, that's not how her blood sugar's supposed to be. And she said something like, there's no like studies showing they'll have long term complications for for writing that high for a short period of time and she's like, she's probably just honeymooning now and she stops honeymooning, like, the insulin will be fine. And you'll be able to use more. Yeah, she actually actually took away her pump prescription. Because she's like, I can't prescribe you the diluted insulin pump if you're going to do it that way. What

Scott Benner 28:43
was the if there was one? What's the rationale from the doctor for just allowing the poor blood sugars?

Adam 28:51
Alright, I think it's just a cover themselves. Really? Yeah, I think I don't like since it's not FDA approved. I think they just want to cover like they're they're selling themselves for like liability. But she also was against us using Android APS because that was an FDA approved. Even though like

Scott Benner 29:11
hold on am I don't misunderstand that she doesn't want to write like it made her nervous to write you for something that you were using off label or something like that, like, okay, but then why is why is there not like, well, let's see what else we can accomplish do to accomplish the goal? How come? It's just like, No, there's a rule so you don't get that? So just let the kids blood sugar be 300 Like, you don't I mean, like there was no conversation of I don't

Adam 29:33
understand it. Yeah. And it was like, she was like calling to yell at me. Like it wasn't like she wasn't being like cordial and nice about it. She was like trying to scare me and saying like, you could kill your daughter kind of talk like it was. It was just crazy. So like, I mean, obviously we found a new Endo. Like very quickly after that, but it was a big struggle. Like, she was like, I don't think there's any reputable like endocrinologist that would prescribe diluted insulin at a pump. And I was like, I mean, there are like, we've done the research, we found them. So I had gotten like a list together of like, you know, like the lead endocrinologist at Seattle Children's and La there was like a bunch of, I think I sent her a list of like eight to 10 doctors, and was like, you know, I talked to all these parents because there's a, there's a Facebook group for like young kids with diabetes. Yeah. So I had talked to other parents who've prescribed like diluted insulin in the pump, and like, asked for their information. So I was like, she's not gonna let us have our pump. If I don't like prove that it's, it's okay. Eventually, she's like, I'm not going to be your doctor. And she she tried to pass this off to someone else at Seattle Children's. And like, after getting bounced around for a while, we eventually found the one we have now. And she's like, she's the complete opposite. Opposite. She's like, amazing sheet. Jesus supports us doing entero APS, she lets us do diluted in a punk. Anytime we need something she's like, she's like, I don't understand the loop that much. But she tries and she like gives suggestions. She's just like, it was like a complete 180 compared to the first doctor that she had. Yeah,

Scott Benner 31:03
I and you were showing her real results, right? Like real? Like, not just Yeah, I

Adam 31:08
had all the graphs. And I was like, here's the days like on MDI, here's the I think we did one day on you and 100 or like one and a half days, and I was like, this is just not working. So we had like, the data and I said, like, we did our research, we found a bunch of people using it. There was like one or two research studies like, you know, small participants sizes, because there's just not that many. There's not many kids that yell that have tried using diluted in the pump. So there's a small sample size, but we like we tried it and it was working. That's that's what we cared about.

Scott Benner 31:40
Huh? Yeah. I mean, I don't know. Like, that's fascinating to me. Really, like, look, we're having success, like, look what we're doing. We're keeping her blood sugar's here. And she goes, No, no, you can't have any of the things you're doing that with because and then not only that, if you persist, I can't be your doctor anymore.

Adam 32:00
Yeah. And she she actually took away for poker. She's the computer scription. She's like, either have to take away your diluted insulin prescription to the pump.

Scott Benner 32:08
How old was she young?

Adam 32:12
She was not old. She was a an advanced nurse registered nurse practitioners. But she was not. She was not like an old doctor. She wasn't. I would say she's probably like in her early 40s. Maybe

Scott Benner 32:25
this is me talking out. I'm not you. If that person is listening, shame on you. It's terrible.

Adam 32:29
Yeah, it was bad. And it was like, the way that she treated us was even worse. Like, she was not nice at all on the phone. And even like we had back and forth after that. And we had to really fight to like find a doctor. She's like, No one at Seattle Children's is gonna let you do diluted inside of the pump. There's nobody here that does that. Even though it was

Scott Benner 32:50
it was working right?

Adam 32:51
Yeah, it was working. So she like after asking around I guess she like we convinced her ask around like all of our colleagues and stuff. And she eventually found someone who's our doctor now who had done they looted in her residency. I lived in some of the pomp. Yeah, I think like San Diego, USC or something. So she's a doctor now. And she had experience with it. So she was like, yeah, like, that's totally fine. Yeah. But in the beginning, she was just like playing hardball and saying, like, No, you can't do this. Like it's not going to work. It's not safe. All those kind of scary thoughts.

Scott Benner 33:22
She found a doctor who does not know I suppose. Yeah. Yeah, that's

Adam 33:28
exactly it. Let me

Scott Benner 33:29
just tell you what I was gonna say, Adam, we can bleep it out. I was gonna say she found a doctor's for you to go to? Is that what you said? What you were thinking? I was gonna say,

Adam 33:36
yeah, exactly. Yeah.

Scott Benner 33:39
People are terrible. Just try a little bit, you know what I mean? And

Adam 33:43
it was like, you know, it's like, a month after a diagnosis. Like, we were already high stress, like, trying to figure everything out doing everything ourselves to like to hear from her doctor, like, you're gonna kill your daughter. This isn't safe. It's like, it's hard to hear. And it's like, an opposite of the truth decision that like my wife, and I have to make, like, how can we best care for our daughter? Like, yeah, he's the number one priority here. Like, you

Scott Benner 34:06
know what it feels like? It's like, Here, here's not enough information to take care of a nine month old with diabetes and you go home, you're like, Don't worry, we'll figure it out. Then you figure it out and go back to her and go, Hey, we figured out and she's not like that. So you won't tell me how to do it. But you know, for sure this isn't right. Even though it's working. It's despicable. Really.

Adam 34:26
Like, even when I sent the message, like telling her what we're doing, I was like, I was like a little hesitant. I was like, you know, there's there's a 5050 chance they take this and they they say we have to stop. And I was like, but I also want to like teach that. Like, this is how it's working. Like you can do this with other kids and like yeah, you know, I wanted to be helpful so I was honest about it, and then it kind of backfired. But in the end, it worked out it was just, I guess all I can say is like if you have a young kid with diabetes, you really have to like advocate and fight for them and like try try whatever is working because it's not okay if you're, if your kids blood sugar is running like 250 300 rides a day are the opposite. Like, we would treat her and she would go low. And it's like, it's hard to get a young kid to, to have sugar at that age, like, they don't drink juice, you can't give them like a gummy bear or something like, I think we were using like frosting. And like rubbing it on our gums at some point. It's like, it's hard to do when you have a baby and you're like, here's some frosting and shoving it in their mouth. Like, it's also

Scott Benner 35:24
upsetting for her and for you. And nobody cares about your, your mental health, like, you know that you're that you're by yourself in a dark room at three o'clock in the morning rubbing frosting on your kids gums. Like, you know, like, I don't know, like, be open minded, like if you're a physician, and you're listening to this, like, if someone comes to you, and they're like this is working. You don't go no, it's not. And then yeah, because this is how I do it. And by the way, the way I told you to do it was to leave your baby's blood sugar over 300 for 10 hours, like Unreal, it was, and

Adam 35:58
we had told her like, we were like, we're waking up like three times a night at least with alarms like, then waking her up giving an injection of correction. Like it was every night, we either my wife or I would wake up and she would wake up and then not go back to sleep for like a half an hour. Like it's hard on the parents can like very bad interrupted sleep and also the baby like, right, it was just not a good time until and then we got the pump. And it was like, wow, this is way better. Like we could sleep through the night. The algorithm like can dose much smaller with the diluted insulin like it was it was like a night and day difference. And even with, like talking to like how much nicer it was for us and her. They're like, No, that doesn't, you can't do that. And I was like, Yeah,

Scott Benner 36:39
I can't keep talking about this. I'm just gonna keep getting upset. So we're gonna have to move on, because I'll go okay. I have a whole other river of thoughts that are flowing through my head right now that I just will take us in a weird way. So do better is my message. Let's see. I want to hear more about setting up Android APS for a baby. Like how old was she when you started it?

Adam 37:05
10 months, because we got we hit the pump a month and a half after for the first pod. We were using Android APs. And it was Wow. Like it took a little convincing for me to my wife to be like, This is what we should try. But once we started it, like, you know, there's no going back once you have a loop. Yeah, no, the algorithms are terrific. But you have to it's kind of like sounds like the iOS app. Like you have to download the code and build the app and get it set up the Android. APS has like these things they call the objectives, which is like a set of questions that you have to answer, like multiple choice questions that that kind of shows that you prove you understand how the algorithm works. Like you understand what the correction factor is what the carb ratio is all that stuff. Yeah. It Temp Basal rate increase and all that. Yeah,

Scott Benner 37:51
it's like the Android APS version of me saying nothing here on the Juicebox Podcast should be considered it's it's them going? Yeah, I gotcha. That's a good

Adam 38:00
idea. That's like, there's a great community to like, there's discord servers with people, there's a Facebook group, there's, so there's a lot of resources, if you need help, and like, need help setting it up. There's not I haven't found a lot of parents with kids as young as ours. So I was kind of treading water a little bit in the beginning. But I found other kids that were two or three and using Android APs. But I didn't find anyone using diluted insulin but like conceptually, it made so much sense. Like, especially when you understand how the algorithm algorithm works. Like if you can manipulate the Basal rate, like you need more than one drip per hour, so you can turn it off and turn it on, like multiple times within that one hour. Yeah,

Scott Benner 38:39
Nah, man. That's It's very cool. You figured and good for you for fighting through the blockade and sticking up for your daughter and everything. And how is she doing now?

Adam 38:48
He's she's doing really good. So I think her last day when she was 5.7. So that was that the one year checkup? Yeah. So she went from like a to diagnosis. She went up a little bit, and then I think it was six at nine months. And now it's 5.7 After a year. That's cool. One of the things that really helped and she's like not on a restricted diet at all, she's she loves like carb heavy stuff. Like, she'll have like 40 cards of oatmeal for breakfast, or like, have yogurt. She has like cereal and stuff, too. So it's not it's not because we're like low carb that we hit these numbers. It's mostly due to the loop. The help of like, we're definitely like the super like nob Turner's to like we we've spent a lot of time like optimizing her settings and stuff. Right. But the other thing that's been super helpful as we actually started using loom Jeff, in March, yeah, this year, maybe two months before her like one year checkup. And that that insulin is like, when we first tried it, it was like magic. Like, like we try we read about you know, some people have the burning or stinging the fiasco for them, Jeff. So we started we just use it as like MDI for like a meal dose. and still had like the diluted human login or pump. We did that for like a week just to make sure there wasn't like, she wasn't complaining about pain or there wasn't any reactions on like the injection sites. And then I was like, We got to put this in the pump like it works, it works so good. Like it hits the insulin hits way harder, faster. And it also has a shorter tail. So like you're not fighting with like having insulin on board and that she gets up and runs around or jumps on the trampoline or whatever. Right. So it's like in and out much faster. Yeah, but I guess that's that's a whole nother story of how we were using loom Jeff and the pump so that it's a un 100 loon jet, they don't prescribe like dilated loon jab and are diluted is human log Saluda is basically just human log with the, like, vasodilator additive. Yep, yep. So I've read people mixing like 5050 lube, seven human log before, just to kind of lessen that stinging sensation in the pod. So after reading that, and do some research, I decided to mix the UN 100 loom Jeff with the u 10. Analog. So I kind of make our own, like use 30 mix with with those two insulins and I mix it right in the pot. So I I take like a certain amount of the diluted insulin, put it in the pot. And then I use like a manual syringe, not the Omnipod syringe and I put some you and 100 Illume Jeff in there, and then I kind of swirl around and activate the pot. We have like a youth 30 diluted mix now with loom Jeff and he will lock in that once we started that it's like so much better control. Like

Scott Benner 41:38
you're like a chemist now.

Adam 41:40
Yeah, it feels like every time we fill a pot, I'm like, Okay, this is you feel like a scientist like you're, you're drawing from two vials and putting it together and swirling it around. And this is like another thing that if we told that to our first her first doctor, she would probably just like,

Scott Benner 41:55
yeah, she'd fall right over like that. But but

Adam 41:58
our new doctor was like, oh, while you're doing that, and it's working. Okay, cool. Like, keep going like, so. Yeah, it was definitely an experiment. And, you know, we're always like, we'll try it. If it doesn't work like, well, we'll know right away, and we can switch. But that's been working super, super well. And I can't like I can't recommend it enough to like people with young kids like, under three or four when you're using like, less than 10 units a day of insulin, like diluted is so much more helpful. Even if you're not using an algorithm. Like if you're using the minimum Basal rate and the pod are point 05. Like, you can't get that even coverage with that, like one drip per hour like the insulin. Isn't that smooth. So like, you'll get a peak like 15 or 30 minutes into the hour that will drop off, but it will hang on, you can't. Yeah. Explain enough fun.

Scott Benner 42:50
It's too small of amount to have a smooth effect over hours and hours. Yeah,

Adam 42:55
and even her her base rate was was lower than point 05. So we'd have like one hour off one hour on if we weren't using diluted. So like you have, you'll have like these natural waves and you can't you can't get good control with that. Yeah, just like every time I try to help people online or whatever, I always, I always recommend trying to leave it in the pump. I think it's a hard thing for most parents to do. Without like, Doctor approval. I don't think everyone is like, you know, as confident as we were. But it's like, if you try it, like, it doesn't really hurt to try it. And like I'm not a doctor or anything. But that was our experience. And it's like, it's night and day difference. It's so much better.

Scott Benner 43:38
I think it's impressive that you figured all this out. I didn't figure any of this out when Artemis this little, you know, Arden was two and I

Adam 43:44
remember your story of like trying to eyeball drops of insulin and figure out how much it was but

Scott Benner 43:50
that's, that's as close as chemists as I came to back then was like I started deciding, like I used to inject drops out into the air with pressure so that like with my eyes closed, like just thinking like this much pressure makes it drop come out so that I could like put the needle under our skin and then just try to make a drop of insulin come out. And you know, I can

Adam 44:14
see why cuz she was what like to when she was diagnosed, right? Yeah, Arden

Scott Benner 44:17
was too but she was 18 pounds when she was diagnosed. So okay, yeah.

Adam 44:22
Oh, yes. Yeah. So my daughter just turned to yesterday. She's like, I think around 28 pounds, almost 30 pounds, maybe? Yeah. And she's still still needs the diluted. It's like, Yeah, we could probably use you 100 Doubt, but we wouldn't have the same kind of control.

Scott Benner 44:40
Did does that. Do you think she's having a honeymoon? No,

Adam 44:43
I don't know. I don't think so. There was like, there was like a one day period like maybe two months in where she like didn't need very much insulin that day. Like she just had her basil going and her Basal was turned off for like four or five hours and I was like, Is this a honeymoon? But she was also not eating See that much, you know, at that age, so right? Maybe I think it might have just been that but like, she's almost one and a half years in now. And there was no sign of like, they kept describing it like the, the endo team was like, oh, there's just gonna be like a big step up or like one day she needs like twice as much insulin. And that never happened like it's been a slow ramp up, but mostly because she started eating more like, she went from like 10 to 15 carbs a day back then, maybe 20 with the breast milk to now she goes anywhere from like, 80 to like 150 carbs a day. Wow. Like she she eats a lot. And she, she goes she she goes in phases. So there's days where she just has like, you know, 75 or 80 carbs, or she's like, right now she's sick. And she's not eating that much. But she's still eating like 80 carbs a day at 90 or 100

Scott Benner 45:48
mad so that's a fair amount. But we look at

Adam 45:51
like the stats all the time. And we can see you can see when she goes through like a gross burger or something. And there's like one week where she eats like, a lot more than the last week or she needs much more insulin. It's crazy how much like the total daily insulin fluctuates, like, she'll go from like 20 units a day to four units a day equivalent. So that's our diluted insulin. But if you convert it back to you and 100 She's, uh, she's using about 10 units a day right now maybe a little bit less of standard insulin,

Scott Benner 46:18
the fluctuation, it's just based on how she eats that day.

Adam 46:22
That's the primary driver, because like, her carb ratio is like, took one to 20 I think if you convert it back when 216 Maybe. So like, most of our insulin is is for meals and you know, kids like they eat like every three hours during the day like, yeah, wakes up have breakfast, like three hours later, there's lunch, three hours later, there's a snack. Three hours later, there's dinner, and then it's bedtime. Like that's the other hard thing about a kid. There's no like, there's no breaks between meals. There's always like some carbs on board. And you always have insulin on board. Like, they just they just eat a lot.

Scott Benner 46:59
And they're not. They're not an adult. They don't sometimes roll into the afternoon to go. I might just have a soup for dinner tonight.

Adam 47:04
Yeah, you can't do intermittent fasting or anything like that. Yeah.

Scott Benner 47:10
Wow, that's interesting. How do you think you and your wife are kind of equally involved in the management? Or does it fall one side or the other?

Adam 47:18
I think we're, we're pretty equal. I definitely do the technical side like building Android APS setting up glue. But she she definitely understands everything like she, she does just as much research and stuff. And she, like, I went to Wisconsin last week, and she had right at home. And she did all the management when I was gone. Like we could each just have her and do it on our own. And it kinda like the same way back and forth. And what other results the same, no matter which one of you were like the primary. They're pretty close. We actually, we kind of work as like a checks and balances on each other. Like, there's some days where I'm like, I think she needs words, one right now. She's like, Ah, maybe not. So like, we kind of split the difference a lot. And it usually ends up working pretty well. Cool. That's excellent. There's, there's so many variables with someone, like even anybody who's diabetic, but especially someone who's her age, because she should like go and jump around or run really fast and, and all of a sudden, like, need way less insulin, or she'll decide to sit down and not be that active one day. Or if she's sick, like she's been on 125% profile for like the last week because she's sick and just like more insulin resistant. And she's also not eating as much. So like, there's so many, so many different things you have to think of and accounted for. But I would say it doesn't really matter who's driving the insulin, or her like, my wife or I were both about the same. Okay, in terms of management, I might lean towards the more aggressive side, and she might be more conservative sometimes. But I think there's other times where where I'm like, I don't think she needs that much or something. So we've kind of flipped back and forth.

Scott Benner 48:56
That's perfect. Is it how is it? What's the strain like on your marriage or your rest that kind of stuff. In

Adam 49:05
the beginning, it was definitely hard, like, the first few months. And like a lot of the stress is just from like, the lack of sleep honestly, like waking up all the time. You know, seeing your kids blood sugar so high and knowing it's not good, but not really being able to fix it. And then like all the other stress of like dealing with her endo team, and like us doing, you know, really custom stuff like theirs. I think I was definitely for you know, let's do all this stuff and try it and see if it works. And she was more of like, maybe we should listen to the doctor or maybe we should talk to them before making changes of insulin in the beginning. And so like there was a little bit of battle there but there's it's definitely stressful. Like it's it's hard. It just takes a lot out of you. I think it's worth a much better spot now. Good. And also we decided to have a third kid and I think that was that was definitely delayed because of where misdiagnosis. Like, you know, you're always thinking about, you know, what if you have another kid and they have diabetes and how much works that that's going to be trying to juggle juggle that when you're like still trying to figure out the first. The first kids like, how do you manage this disease and stuff? But yeah, it was

Scott Benner 50:20
better I feel that's it. And that's a big decision to make another baby after you've now lived through what this is, you know, because if it happens again, it's a lot. And you know what now, you know,

Adam 50:32
we got to like a point where we were confident and like, okay, we can handle this. And, you know, we didn't want to let diabetes like change our plan. Like we have always planned to have three kids and stuff. So I'm like, What side? It's like, you don't want to have something change your plans. But on the other side, it's like, you have to be realistic about, you know what the future might be?

Scott Benner 50:49
Yeah. No, I agree. So it's your wife pregnant? Are you trying or what's going on? Yeah, in

Adam 50:55
in August, actually, we are expecting baby number three. Oh,

Scott Benner 50:59
just a couple months. Couple months? Yeah. Good for you. Congratulations.

Adam 51:03
That was another thing I wanted to mention is the celiac disease. So after like, finding out I was celiac and cutting out gluten. I had done some research because for our second kid, we had like, a really hard time getting pregnant. It. It took, like nine months or so. And, you know, she tried all the things like usually, you kind of just assume it's, you don't necessarily assume it's like unfair, but a lot of times that falls on the wife, like with a female to figure out, you know, what, what's wrong, like, infertility wise. But when I cut out gluten, like this baby was like, just right away one try, like so like I learned about the the infertility, infertility with celiac, in men and women. So if like other people are struggling trying to get pregnant, and you have like, your celiac, or maybe you don't even know your celiac, maybe you could test for that. Like, that's just one other thing to try, right? Because it's really hard when you're trying to have a baby and you can't like it's, it's really stressful, like, emotionally and but yeah, that was like, I never thought of that until after kind of retrospectively. Well,

Scott Benner 52:12
let me say, first of all, that's wonderful and terrible. I'm sorry that she got pregnant so quickly, and took away all the fun parts. And happy for you that it was easy to get pregnant. Yeah, and good advice, by the way, that share with people, although you've been married for a while, I don't know how much of that fun you need it. Well, you've been on quite a little journey in quite a short amount of time. Yeah,

Adam 52:32
it's been a lot. But you know, we learned a lot. How old are you? And we're still learning? Yeah, I'm 33. Okay, you guys waited

Scott Benner 52:39
a little while to have kids, too. Right? You were like, 27? When maybe you were having your song? Yeah.

Adam 52:44
Yeah. 27. Sounds right.

Scott Benner 52:46
That's a Listen, do you think you would have if you were younger? Would you figure this out?

Adam 52:54
Not as fast. I'm sure. Like, I wouldn't have had as much free time as I do not to do the research and figure it out. I guess maybe you'll make time at that age. But yeah, I don't know. It's hard to say. I've always been super technical and into computers and like comfortable doing research and stuff. So I probably would have figured it out. It just might have taken longer.

Scott Benner 53:16
Yeah. It's interesting. I'm a computer user, not a computer understand her.

Adam 53:22
Yeah, no, I was like a programmer. So I wrote, write code and stuff. So I'm really familiar with all that.

Scott Benner 53:30
That's cool, man. Yeah, that comfort levels is super helpful when you're digging into loop and stuff like that, like just whether you understand it or not, when on day one, when you start learning about at least the terminology and the things you're seeing in front of you seem like familiar, you know, I can, I can see why it would be easier for you and off putting for other people.

Adam 53:53
Yeah, like, because of experience, I was able to set up like a lot of things that that work better for us like we can, like she has her own phone that we kind of keep nearby. But we set up like a remote desktop app. So you can we can control her phone remotely wherever she is. So like when she's sleeping in a room at night, we don't have to go in there and grab her phone to dos or we just use our phones and remotely connect to her phone. And then we can interact with it, like as if we were touching it. So that's like super helpful. And I've helped a few, like other parents set that up. So like, it also works with like honey, pot five or something like if you have an Android phone as your controller, you can talk to that phone and control it. Even if you're not using glue. Like you can communicate like an iOS or an Android phone remotely like that and take full control. So that's like, kind of like a hack on how to get remote bolusing working. Yeah, before it's like officially supported by like tandem or Omni pot. So we've been using that. And there's other things like I had to write some code to set up like a like a fitness watch so I can get her blood sugar's on there. And there's like a great, great community for all this stuff. So you don't really Have to do that much work just kind of tweak little things to make them work.

Scott Benner 55:04
The Remote Desktop is brilliant. I never, I've never even considered that, because that's something yet. Anybody can do with their computers and their phones is run one device from another device as long as that remote desktop app and the client is one to the other, right? Yeah,

Adam 55:20
and iOS has has something similar, but I don't I don't know if you can do fully unattended access. So there's, there's some hacks you have to do to make it so like the other person on the other side doesn't have to click like, okay, you can touch my screen, right? So there's a way on Android to do it, where it's like fully unattended access. So you don't have to the other person like her phone doesn't have to acknowledge that we're connecting, we can just connect and do whatever we want and disconnect. Yeah, that's

Scott Benner 55:44
terrific. That's so smart. Good for you. That your idea? Did you see somebody online doing it?

Adam 55:51
I don't know for sure. I have. I think it was my idea. Because I had done that before. Like I had used a lot of different remote desktop clients to control devices before. So I had some experience with it. I don't remember reading about it, but I definitely helped other people set it up.

Scott Benner 56:08
That's something that's I've asked one of the more brilliant things I've heard in a while, honestly. Yeah,

Adam 56:12
I mean, Android APS has like, they call them SMS commands. So you can kind of do the same thing. But it's like, you have to text like Bolus 1.5. And then it will like text you back. And you have to like, put in a password or a confirmation code. But it was like really clunky and you can't like, you can't see all the insulin on board, you can see like the treatments and stuff, but it was just like, and then we needed to have a text plan on our phone right now. We don't need a text plan. We just did connect her phone to Wi Fi wherever she is. And then we have full access. And we can, we can actually see what we would see if we were holding our phone, which is way nicer than trying to like

Scott Benner 56:48
those. Oh, yeah. Sounds amazing. That sounds amazing. It really does. Like, I mean, it's so valuable just not to get out of bed. You know, because that's all you're gonna do is get out of bed, walk into the room, pick up the phone, do the thing. And if you can just see them. I don't know that you're gonna have a bunch of people asked me about that? Because that's a great idea. Yeah,

Adam 57:09
there's like, it's not too hard to set up. There's like some hacky have to do to make it fully unattended. So you don't have to like, click OK, on the other side, but that's about it. Like, it's not too hard to figure out if you search on online. Yeah.

Scott Benner 57:20
Is it stable? Is it a thing that stops working periodically? Or is it been fairly stable for you?

Adam 57:27
It's been really stable, but I'm always Wi Fi to Wi Fi. So or like my phone might be on mobile data, but hers is always on Wi Fi. I think if if you have like, you know, a kid at school, and they're playing recess, and you she's there on like a mobile network, it might be a little slower, like swiping, because you're kind of just like remotely viewing the screen and doing touch interactions on it. So sometimes, if you connect, it'll be like a little slow, like you're swiping the screen will be like a half second behind. But it's pretty, it's pretty one to one most times, but I could see it maybe being a little slower. If it was a bad network connection. Yeah, like that's maybe one advantage you would get with just SMS because you don't really need a data, a strong data connection.

Scott Benner 58:06
And I found my question, do you have to be on the same network to use it?

Adam 58:11
No, no, not at all. So like I when I was in, I was in Wisconsin last week, so I could control her phone remotely, to give insulin or do anything really. But you don't have to be on the same network at all.

Scott Benner 58:22
That's awesome. No. All right. That's the best thing I've heard in a while. Thank you.

Adam 58:27
Is there all the remote desktop clients like you don't need to pay for like their? The free versions are sufficient enough for what what we use it for? Yeah.

Scott Benner 58:36
Oh, yeah. You're not paying like a fee every month or something for it? Oh, yeah. Not at all. How long do you think? Wow. I mean, she's so young. You've got years of this coming up? Honestly, do you think this whole like remote thing will help you when she goes off to school?

Adam 58:55
Yeah, I think I think that's where it really becomes useful. Now. It's supposed to be like, she's napping, or she's sleeping at night. It saves us time. Because like, we're always with like, either my wife or our like one of us. We're always with her. So it's never like, you know, we don't have like someone here that we can trust her with yet like, we haven't left her with like a babysitter or we don't have like, I have two brothers here with us. But they're not. They're not like the kind that would babysit like kids overnight or anything. They're

Scott Benner 59:26
not the kind of brothers that live babies and kids overnight.

Adam 59:29
What kind of what kind of watch the dogs you know, they watch for maybe an hour or

Scott Benner 59:37
two, but then they lose their interest.

Adam 59:41
Yeah, I mean, you know, maybe we're a little bit more protective with our kids that some parents but you know, it's hard to leave them with, especially like a diabetic child with any caregiver. Yeah. And it's like a two year old to like, or she just turned two but yeah, I think what she does go to school, having that Control be super, super helpful, for sure.

Scott Benner 1:00:03
Well, good for you. So we're not maligning your brothers. Is that right?

Adam 1:00:08
No, they don't. They're just, you know, like single bachelors.

Scott Benner 1:00:11
That's what I was getting at. They don't have their own kids.

Adam 1:00:12
Yeah, right. No, one of them has a dog. You know, even that's like, a lot of work. You're

Scott Benner 1:00:18
afraid for the dog?

Adam 1:00:21
Yeah, for sure.

Scott Benner 1:00:23
It's the way that dogs eaten every day.

Adam 1:00:26
Yeah, probably not.

Scott Benner 1:00:27
I get that. I mean, I understand being protective as well. And I mean, it's a lot, she's still very little, there's, you know, a lot like you said, she'd get up and run around a little bit and change her whole situation.

Adam 1:00:41
And then even like, with all the experience we have, there's still days where like, she goes into a double down at like 100 or 80. And it's like, okay, that that didn't hit, or she'll start eating. And then just as he likes to run around and play instead, like, you're not dealing with an adult, like, it's, there's so many different factors you have to think about. And it's hard to, it's hard to explain all these steps to somebody on like, how to care for your child. Right. And we're like, study that, we have to figure that out for like, in August when the next baby's coming. So like, we're gonna have to leave her with some family. So like, trying to think about, like, how do you write like a, like a guide on how to care for your daughter, there's like, way too much information in there. Like, and like not even talking about, like sensor changes, and pod changes every three days, there's just like, so many factors that you have to do it and teach them how to use like, just the controller to enter insulin like, so not having somebody kind of, like, on and off like family nearby to help is kind of hard.

Scott Benner 1:01:42
I would imagine also, that you don't exactly know what to do. Every time.

Adam 1:01:49
Yeah, for sure. Yeah, every meal is like, you know, we don't we don't like weigh out her food and measure it. Like, you kind of just learned, like, you know, this pile of food is like, maybe, you know, 15 or 20 carbs, but you don't know how much she's going to eat. And it's different every time. And that's like another thing with having a kid so little, I think in the beginning, they told us to dose her after she eats. But she would sit down and like, you know, they play with their food. They take like an almost an hour to eat. Yeah. And if you wait until after that, like her blood sugar is already 300 By the time you get insulin. And it messes like all your carb ratios up and stuff. Because you're not you're not timing it right. So even even at a Yeah, like before we went to the pump, we were doing like a pre injection of Pre-Bolus. Before but it was just so hard because we could give like the smallest dose he could with a syringe, right? And sometimes she wouldn't eat enough food. And then you had a lot of times have to dose after she gets out because you don't. We never wanted to like inject her while she's in her highchair. Like it just feels kind of wrong to like, interrupt her eating that way. So that's like another reason why the pump is so helpful. And then how do you get really good with the injections?

Scott Benner 1:02:55
And when all of these variables are possible? How do you explain that to somebody? For babysitting? Exactly, right?

Adam 1:03:02
Yeah,

Scott Benner 1:03:03
yeah, I don't think you're being overprotective. I think you're being pretty realistic about the situation.

Adam 1:03:08
Yeah, we're still definitely worried about what's gonna happen. But surely, I think we'll do as best as we can to prepare whoever's here and, and try to figure it out.

Scott Benner 1:03:17
Have you ever had to do anything emergency for low blood sugar? Have you always been able to bring it up somehow?

Adam 1:03:21
No, yeah, we've always been able to bring it up, I think, with the Dexcom. And like our alerts, and I use something called the extra app on Android. So we both my wife and I have alerts on our phones. We have like watches set up so we can see our blood sugar on there. But yeah, we have our alarm set, I think at like 90 or 80 During the day, maybe 90 At night, so we can wake up and treat it a little bit in case of like, for some reason starts diving. And that's like 140 during the day. But yeah, with the with the alarms, it almost never happens. There's been like a couple of times where she dips into like, like 50s And it's like, okay, like she already ate but it's not hitting yet. And sometimes you have like compression lows at night where the sensor like all of a sudden drops straight down. So you wake up and you're like, okay, is this real? Like roller over? Yeah. But yeah, we've never had to use anything other than she really likes fruit snacks right now. So that's her. Her like choice of treat right now for when she's going low, but it doesn't happen too often. Maybe like once, once a week or every other week. And some you know, you'll have bad weeks where you need for snacks a couple of nights in that week or whatever. But yeah, we always know she'll have a fruit snacks. She'll never like say no to that. What's the go to right now? And of course her brother always wants a fruit snack when she gets a fruit snack. So that's always fun.

Scott Benner 1:04:41
What's her level of understanding about her life? Do you think?

Adam 1:04:45
I would say she's, she understands it pretty well. She actually does her own finger pokes or blood sugar checks or whatever you want to call it like she's, she's in a phase right now. She wants to do everything herself and her one year checkup Like either you have to give like a finger prick to do your agency check. So the nurse whoever was in there was like, really surprised that Bryn like, we gave her like the meter case, she ends up that she took out the meter. She needs help like opening the strips container, but she'll take the strip and put it in and give herself like a finger poke on her finger. And then there's like, they were like, That's so crazy. Like, he's like one and a half years old or whatever, when you are nine months old. But yeah, it kind of is frustrating sometimes because like, if if you need to check her fast, like she's dropping or something or the sensors wonky on the first day, she like insists on doing it all all by herself. And sometimes she'll take her time. So it's it can be like, you know, a little frustrated you like come on, let's do it already. Let's go like pick a finger and she does her toes a lot, too. When she was really little we just did like pricks on the toes because the fingers are so tiny. Yeah. But I think she she understands she knows like, which what her her CGM is she calls it Dexcom. And she can like point to it. She knows which one her pot is. She like wants to rip off. Like when it's time to change, she'll rip off the pod. She can't really reach the next conference on the backup leaves like upper but for Dexcom. But we do paws on like her stomach or her arms or her thighs. She's like, she's really good about it. Yeah, she's really good. I don't know, if she she doesn't really understand what it's like not to have diabetes, because she's She's had it forever in her life. Right. But I would say she's, she's, for the most part comfortable with doing all this stuff. She really, she's like, more recently, she's been not liking the injection. Like when the pot clicks in. She's been like, you know, trying to avoid that that part, but she lets us stick it on. And sometimes she'll want to put it on herself. But with the adhesive, like, it always gets messed up if you don't put it on there nice and flat. So that's like frustrating for her. I think that she needs help. That's to help her.

Scott Benner 1:06:53
What about her brother? There's like, what's her brother's like, understanding of what's happening?

Adam 1:06:59
I mean, we try to we try to talk to them and explain to him all the time. Like, I think it's hard for a sibling like that, because like every meal were like, my wife and I are talking like, oh, how many carbs? How much insulin? You know, like, what did she eat? Like, if we weren't watching, one of us has to ask, like, how much did she actually so he hears that like all the time. And I think at first it was it was like clearly really hard for him like, like attention wise, he was having to give up all that attention to her. And you could tell like, you could tell it was hard on him. Like it's definitely hard on the sibling as well. But he he understands like a low blood sugar means she needs a fruit snack, or she needs some kind of sugar. And he knows that like high blood sugar, you need insulin, right? He wouldn't know like, obviously, like how much or whatever. But he's always excited when we check her blood sugar because he usually knows that means she might need a fruit snack. So he's like, he knows how to read the like, he can read numbers already. So he he'll read like the number and he knows like if it's a certain number that she's a fruit snack or whatever. But he also doesn't know like how much insulin is onboard of that stuff. So sometimes you'll see it's like 80. And he's like offered snack. And right now like She's good. She has like no insulin on board or whatever they understand. So we tried to talk about it to him because like we want him to be able to help her. Like when they're both in school and stuff. So I think he understands it pretty well. Like at a high level

Scott Benner 1:08:27
does he feel any responsibility for do you think or no,

Adam 1:08:30
he definitely has his moments where he'll like go and run and get a pack of fruit snacks or something. Like he'll help or he'll run and get like the meter or like you need a Kleenex or a tissue to stop the bleeding. And he he'll help out with stuff like that. I don't know if he fully understands, like, you know how to care for like, yeah, he should help care for her. But you could tell he he has like that in his heart like he wants her to to not be heard. And he can see like, if she's struggling with an injection or something like he'll, they'll go and like rubber back or like hold her hand and it's really sweet how he tries to help out.

Scott Benner 1:09:04
That's, that's amazing. Oh, that's really terrific. Do you have any advice for people who have little kids with diabetes, like anything that really sticks out in your head? That wouldn't be something that the rest of us would even know.

Adam 1:09:15
I think I probably covered it all. I would say like getting the pump as soon as you can definitely like a CGM like that's number one. But a pump is so important because like if you think about how many times the pod is giving insulin in a day, like you don't want to have to do that many injections for a young kid. We've she's always had the only pod so I really can't speak to like two lists versus not. But the tube this pump is amazing. Like even on her tiny body. It doesn't seem like that big and clunky. Like her shirt can go over it and stuff. But yeah, get a pump and get a CGM and I can't recommend diluted insulin enough. I know that's kind of like a it's going to be a little bit harder for some parents to do. And a lot of places will give you diluted insulin like our our hospital will do. Like none of the pharmacies around here will actually dilute it, they, they insist on doing it like in the inpatient pharmacy, in the hospital. So they mix it, it's kind of funny because they mix it in like a chamber where it's like, very safe and not gonna get contaminated. And then we at home, just like go and fix it ourselves, like on the table. But like, after doing research, a lot of a lot of hospitals just give you like the human log and give you the diluent. And they tell you to die at home. So yeah, it's just different. What advice you get, depending on you know, what part of the country you're from, or wherever you're from, right? What a lot of people are comfortable diluting at home. And sometimes like they say, Oh, you can only get it from this hospital. And it kind of sucks if you're like a 45 minute drive away. Sure.

Scott Benner 1:10:45
Do you think how long do you think she'll use the little insulin?

Adam 1:10:48
I would say, like, a few years at least, like, just because of the additional control you get. Like a lot of times, you'll hear endocrinologist won't give you a pump until they're using like, a certain amount, like 10 units a day or 15 units a day, or Omnipod. Five, I don't know what number they suggest. But it's mostly because if you're under a certain amount, like the algorithm is not going to be that efficient. Like it can't take away and add basil very much if you're already on the minimum basil or close to it. So now she's on she's on about 10 units a day, even if she was on like 30 units a day or something. I feel like using some form of diluted is always going to help. I think we'll probably slowly ramp up like right now around a youth 30 like 30% strength. I think we'll probably settle on like, you 50 It seems like that's what the for the kids that do diluted, they usually end up on like you 20 to 50 until like five or six years old either.

Scott Benner 1:11:45
Wow. So when I just feel like we should go over this once because we talked about it so much. You're diluting the insulin, what did they dilute it with? So

Adam 1:11:57
we obviously had homologue and lucetta. So I can speak to that I think theosophy has their own dilute and but basically there's a dilute that like Lily has for the HELOC insulin. It's like some probably saline mixture. I don't actually know what it is, but they call it like Humalog Bailu. And so you can actually for the people that dilute at home, they get a prescription for that diluted and a prescription for the HELOC and they mix it themselves. So they're they're basically just watering down the insulin to a certain ratio. So that's like 10% strength or a lot of people do like 25 you 25 That would be 25% strength. But for us for the to create our mixture, like you have to do some math because I don't have dilution and like we've asked for the prescription but are our endo is like on maternity leave for a while. So we haven't gotten the doula and so we're just kind of using what we have right now. Right? So I use a u 10. mixture, which is basically like, you know that that diluted insulin from the UN 100 Human log and the diluent. And then I mix that with the EU and EU and 100. Luke Jeff to make you 30. So I did some math to figure out like, you 100 is basically like how much insulin per milliliter. So I think 100 is like 100 units of insulin per like 10 milliliters or something like that. So if you know like the, the math behind like, what those ratios represent, you can calculate, if you want like a u 20. Or u 30. You need this much of your diluted insulin and this much of your even 100 insulin and you can you can figure it out if you so I mean, you might need to be a little more like math savvy to do it. But it's not super complicated.

Scott Benner 1:13:34
So when you do like, let's pick one, you want 100? Okay, so does that mean, if I use a unit of real insulin, I'm getting a unit of insulin. But if I use a unit of diluted insulin that's diluted to you 100, then every unit of liquid I push is has that 10th of the power of a unit of on diluted insulin. Exactly.

Adam 1:13:59
When we were on you 10 Like one unit of you. 10 is like point one units of you and 100. So you just you 10 is like the easiest diluted because you can just move the decimal over one, right? Because it's just 10%. Yeah, so like, five units of you 10 Insulin would be like point five, like a half unit of you and 100.

Scott Benner 1:14:19
And the value there is that the pump can do full units pretty well of liquid. But it would have trouble more trouble doing a 10th or a 100th of or you know if you need to less

Adam 1:14:31
than less. Yeah, so the pump can only do like I think at least I know how many pot I think there's some that support like a smaller drop, but the smallest drop Omni pod can do is point 05. So that's point 05 units of like if you're using a full strength insulin, but if you put 10% strength insulin in a pod that point 05 is actually quite five units, or it's actually point 005 units of insulin.

Scott Benner 1:14:57
I've heard people have these conversations so many times. And it confuses them every time. It's hilarious, actually.

Adam 1:15:03
I mean, I do why because yeah, you're dealing with something like, very important, like even insulin is one of those drugs like at the hospital, like anytime they, they're going to administer it, they need like a second person to look at it and sign off, right? Like, it's a very important drug. So like, you don't want to mess up the calculation. And like, when I did it, I was like, I checked my math like a few times, and I'm like, okay, is this right? Like, double triple check?

Scott Benner 1:15:28
Well, yeah, what was that like the first time where you just like, I hope I hope I have this or you just did it until you like, I can't be wrong about this. I've checked it. So she

Adam 1:15:37
was at like a point where with the u 10. She had gotten to the point where she was using, like, 200 units of u 10. And she was like running out of the pod because you can only fit 200 units in the Omni pod. So she was having to change pods more often. Like every instead of three days, they were like, we were running out of insulin after two days. So that's when I was like, Okay, you tennis is too much dilution, we need to change it. And that's around the time where I wanted to try the loom Jove. So I had like, calculated how much insulin do we need in the pod for like not not to run out and to have a sufficient amount never have to worry about running out. So I came to like a u 25. Are you 30. The reason I went to U 30. Is because just based on the lines on the Omnipod syringe, so they have like a min line on there, which I think is 80 units, if I remember, right. So I feel like 80 units of that included insulin using the Omnipod syringe, I put that into the Omni pod. And then I take just like a normal syringe that you'd use for a manual injection and take 25 units of litter, Joe, and put that into the pod. And then I swirl it around. And if you do the math, that's like, so you have 25 You and 100 units of lumed, Jeff, and if you have 80 units of YUTAN, that's really eight units of like full strength insulin. So you have like 33 units of full strength insulin equivalent, and then you divide it know like how much insulin you put in total. So that's at plus 25 units, you have 105 units of insulin. So if you take 33 divided by 105, that gives you like the strength of your insulin. You just fried up to like 31.4 or something. So it's the 31.4 if you want to be like really technical about it.

Scott Benner 1:17:19
Yeah. Okay, you fried my mind, then

Adam 1:17:23
go ask your doctor, or maybe some other people can understand.

Scott Benner 1:17:27
Oh, my God trying to simplify it. No, I know, it's, it's, I don't in the end, I don't think it's that. I think if I was doing it in front of me, it would it would have the feeling of like if I had two beakers in my hand, and one of them had like blue liquid and one of had yellow liquid. And I'd be like, Look, we're gonna put a percentage of this, this that this is the mix, and I go, Oh, that makes sense. Like, visually, I would get it just

Adam 1:17:48
like a mad scientist for a little while. But after a few pods, it's like you do it enough every three days where like, you don't even think about it, like my wife or I can fill a pod and neither of us have to like, look up how much we're doing. It's just you just kind of figure it out. And if you do it enough, it's just, it's just like filling the bog by normal now,

Scott Benner 1:18:06
right? I wonder what will happen when she stops using it? Like, if it'll be difficult for you to talk about the unit's correctly at first, I guess it won't matter, right? If you don't,

Adam 1:18:15
it's a little hard now. But when we have her checkup, so she goes every three months. And every time I have to like sit down and convert to the UN 100 units because our endos like, if you told me it and like you 10 Or you 30 Like I'll just be really confused. So just we convert everything to you and 100 like her current ratio or sensitivity factor and everything to explain it. So we talk about it and four units to her. And I think this this, this diluted stuff, but also be really hard if you have other caregivers to try to explain to them because the part that's tricky is if the pod fails, we usually use loom Jeff now because we have it. But we can't just use the same units right? Like one unit of loom Jeff is like way more than one unit. If we plug it into our controller, that's like three units of the diluted or whatever. Yeah. Wow. As long as you're aware of all the ratios and stuff, it's not too bad. But if Yeah, if you have like someone else taking care of your kid during the day, like a school nurse or something, it would probably be really confusing for them for

Scott Benner 1:19:14
either mine. Yeah, because your kid will sound like they're using just a an odd amount of insulin for their size, right?

Adam 1:19:23
Yeah, so if I look at like her loopback she's using like 20 or 30 units a day. But really, that's only like nine or 10.

Scott Benner 1:19:32
Like you would 100 Eat. Yeah, yeah. Yeah. Yeah, that would that would throw someone off. If you handed them like a two year old. They're like here. She uses 50 units a day. They'd be like, what? Wait, stop what?

Adam 1:19:42
Yeah, for a while, she was like on the utet. She was using like 200 units a day. And that was like another thing we hit was like the volume of liquid going into her was so high like she was up to like, I don't know, 25 or 30 units for like a Pre-Bolus and it would just take you know, it takes like a few minutes or whatever. For that to actually get in. And I think her sites were just getting like over flooded like her body so small you can't you can't shove like too much insulin in that same site. Like it I think it just slowed down the absorption a lot. Yeah, it floods. So that's another thing like when you increase the strength of the insulin like, if you like we went 30% Stronger like, like from utente 30 She's getting like a third of the volume of liquid. Yeah, so that's like another thing to keep in mind is if, like, you'll, you'll know pretty quickly if you're not eating too much, because you'll run out of like, the pot will run out of insulin. But you might want to switch even sooner if if you're like, using like huge boluses. Like now her Pre-Bolus is like, you know, five to maybe nine units, or eight units at the most Hmm,

Scott Benner 1:20:41
do you? Do you see tunneling where the the the liquid goes in and actually comes back out near the near the cannula?

Adam 1:20:52
Yeah, we definitely did more with the when she was getting way more insulin. And for a while when we first switched to lhundrup. That's one of the things that people complain about with Vyasa lube is like they have tunneling or occlusions. And it's always, it's always kind of hard to trust what you read online because you don't know if like, is it really tunneling or an occlusion or did like they hear a miss on a Bolus, and they can't, yeah, they can't figure it out or whatever. So you kinda have to take it for grain of salt. But when we switch to loom Jeff, we did for a while have pods that would seem like you can tell if the site's going bad. And it would go bad after like two days or two and a half days instead of the full three days. But that was also happening with the UN hunter or the uTec. When we were using like way too much insulin for pot, like pretty early on, we got the prescription switch to switch to pot every two days. But now we're at a place where it almost always last like past three day limit, because you get like the what 12 Beta eight or 12 hour grace period. So we're always always getting the full sight. You know, every once awhile, you have a site that just goes back a little earlier, you switch it, but for the most part, it's working really well and she doesn't have like any, like inflammation or swelling on her sites with the loop, Jeff. And part of that might be because it's diluted, like I've read people that start with like a diluted like 5050 mix of lhundrup just so it's not, you know, like the reaction for the vasodilator in the insulin sometimes makes like people's pump sites read or swelling or hurt when like painful and the insulin is going in. Right. So they dilute it for a while. And then over time, the body kind of gets used to that that as a dilator. And then they like slowly like other people I've read slowly go to you and 100 Or like, they don't they like back off that 5050 mix. And that's actually where I read people mixing in the pot directly and where I got the idea to do it. Because most people that use diluted insulin like they buy like sterile vials and they'll do like a huge batch and then they'll just use that one sterile vial and that's always like the insulin that they pass around to like when they go to school and stuff so it's always the same Yeah,

Scott Benner 1:22:46
they you're maybe you're making me think about it again, because I fast definitely worked better for Arden in our like limited testing but it just stung and so she didn't want to use it anymore. But I did a couple of times mix it with an insulin that I knew didn't burn. And she she couldn't tell the difference then so I wonder if I could

Adam 1:23:08
recommend so the ask is the same as Novolog like the chemical makeup yeah like the house was just like Novolog with like the additive for the vasodilator and it's like the same as like loom jam is Pima logs like bass rapid acting insulin or whatever. So from what I read you want to like keep the families together like always dilute loom Jeff with p log or fiasco with Nova log but I've definitely read people that mix like they might just have he'll a log and they got fi OS when they fix them and it seems to like I'm not a doctor or anything but people say that works like I don't like you could probably make some Phaedra with the Aspen it would probably less than the stinging but I you know the thing that becomes unpredictable is like the duration of insulin action the DIA like the there's like a exponential curve on like you know when the insulin hits its peak and when it backs off right so if you're sticking with like the same kinds of insulin it's it's less of a

Scott Benner 1:24:04
I would never have mixed a pager with the ass

Adam 1:24:08
Yeah, I would recommend it No, I would not people mixing the US with Heba log or whom Jeff was noble log, like I see that happen all the time where they do like 5050. Right, less than the burn for a while. Yeah, I gotcha. But yeah, Dr. Blah, blah, and

Scott Benner 1:24:23
it's not a doctor at all. He doesn't even have trustworthy brothers. Don't listen to him. Now I mean, I appreciate you doing this. Is there anything that we missed or should have talked about that we didn't? I

Adam 1:24:37
don't think so. Cool. We talked about like Hashimotos and celiac and all that fun stuff. I wanted to thank you for the podcast and like, like even not not just for my daughter's like Karen diabetes, but even for me like figuring out the celiac and the thyroid. I don't know if I would have gotten that as fast if I didn't hear So many people talk about it and you explain it in like your podcast episodes. And like, even when I got my TSH back, I think my doctor had like a quote, that was something like, you know, your thyroid labs look perfect or look good overall. So like having a TSH of 2.7. And like, I never would have dug into it without without hearing about the stories on our podcast. So I just wanted to say I really appreciate it. Oh, I'm, I'm for that stuff. And also all the diabetes like advice, like, it's been super helpful. I can't thank you enough. No, it's my pleasure, thank

Scott Benner 1:25:33
you for saying it's very kind of you. Thank you. I just make sense, right? If this many people are going to listen to the podcast, and a pretty large fraction of them are going to intersect these other issues, we should talk about them and try to make them things that, you know, come to mind and, and make you feel like, oh, I should ask somebody or push about this a little bit. Like, you know, I think another thing that we talked about that we almost don't talk about enough is like low iron anemia, things like that, that that intersect so many people and doctors will absolutely look right through it. Like you can have anemic numbers, and they'll just be like, Oh, you're anemic. That's it, but just what happens.

Adam 1:26:15
And like, it's funny how the ranges they use, like the reference ranges are just, they're just like a best guess. Like, everybody's a little bit different. And you know, one number for one person might be horrible for another person.

Scott Benner 1:26:26
Yeah. And no, it's stunning to me. Like, it's stunning to me to see somebody that like anemic and the doctor is just like, well, you're anemic. You should take a supplement. Like yeah, that'll help in 20 years. Thanks. Yeah, big help. I'm dying. Now. That's crazy. Yeah. And

Adam 1:26:41
literally, like, with the experience, I definitely like second guess a lot of like, opinions from doctors are like, you spent a lot more time doing your own research on the side like you, you take what they tell you and that add your own stuff. And also, I learned like, it's really important to advocate for, you know, what you want for yourself or your kids or whatever. They'll just do, like, I mean, every doctor is different. They're not all bad. Like there's no other times they just do like the minimum Right? Like, yeah, like probably just get stuck in their day to day and

Scott Benner 1:27:10
100% There are plenty of doctors, they'll see low numbers to go, Oh my God, you're anemic, we need to get you an infusion and get your blood work, you know, together so you can feel better and blah, blah. But just the amount of times that it's ignored or even in other like medical situations where you're having other problems. While you're anemic, too. We'll talk about that later. Like, we need to talk about that later. Like, stop that too. Like it's pretty simple to give someone an iron infusion. And and yet they they just act like it's not a thing. And then same thing with your TSH and you're talking to your doctor, I'm assuming you've listed your concerns. And then they see your TSH over two and they're like, it's fine. Yeah,

Adam 1:27:47
I went in there, like for that first test. And I had a whole list of like, the symptoms I was having. I was like, none of these are like, you know, it's not affecting my day to day life. They're all like kind of minor things, but they add up. Yeah, and even with that, it's like, Oh, your thyroid is good, like 2.75 It seems fine. And

Scott Benner 1:28:03
they are they are you, you just don't realize it until they get cleared up.

Adam 1:28:09
That's when you'll know even even after I had like I have a special endocrinologist now for thyroid, and even after like taking the 25 McG dosage for six weeks when I went back. She She like asked me if I wanted to increase my dosage. It was so weird. It was like, you know, your TSH is three like still like 3.35 or whatever it was. And she's like, do you want to try doubling the dose? And I was like, Should I try and like, from listening to you and stuff I I kind of knew like I wanted my values to go up. But she didn't like come out and say, I think we should double your dose. She like asked me the question, which was so bizarre. It was like, aren't you supposed to be the one like telling me what to do? Like, I don't know. It's just weird. Oh,

Scott Benner 1:28:49
no, it happens. Every time it happens. I stopped myself from going oh my god. What do you say? I

Adam 1:28:57
was like, I was like, I asked her what her opinion was. And she was like, I mean, I think you could try it if you want to. And I was like, okay, like, let's do it. It's just weird. Like, having so many different experiences.

Scott Benner 1:29:11
How many people do you hear on the podcast? Who a doctor says no to them? They go come on and the doctors, okay. Because you have no firm opinion on this. Like you just said no. And some people go, Oh, no. Okay, I guess no. And then some people go well come on and do it. And they don't even resist. They go Yeah, sure. Well, I mean, if you want to let's try that. Like you see, you have no medical opinion. You just said the first thing that popped into your head. And now that I've pushed back the tiniest bit, you're willing to change your opinion 180 degrees. And

Adam 1:29:38
then there's doctors like our first doctor who is like, definitely no, like, I'm not going to be your doctor kind of thing. So like there's such a big range of people that you have to deal with and learn and, you know, kind of fight for

Scott Benner 1:29:51
Adam. What I hear in your stories is you had a doctor who was didn't know what they were doing and then said they did and went the wrong way. And then you have another doctor who Who like sees the numbers? It's not right yet. And goes, I mean, it's up to you, Adam, a software engineer? Is that what you do? Is your software engineer? Yeah, great. Well put you in charge your thyroid decisions.

Adam 1:30:14
I mean, I found it's not easy getting like an endocrinology appointment these days, like how COVID and stuff I had to wait like months or whatever. So I dug around and found one who would like basically say, Yeah, I'll give you a prescription because I know there's some who you have to fight with a lot harder to get even get the thyroid medication with a two or three TSH. So Well, good for you, I probably will get a different doctor at some point. Like even my gastroenterologist for celiac like, I wouldn't say either from her great, like, I'm not gonna bash him or anything. But you can tell like, what knowledge level people have and how confident they are just by spending some time with them.

Scott Benner 1:30:50
I'll tell you right now, like, we live in a world where I'm fairly comfortable saying that if you can get a doctor who will give you lab results, and we'll be amenable to your suggestions about your medication, and you can go listen to the episode with Addy about thyroid, you can probably manage your thyroid better than many doctors that you're going to meet.

Adam 1:31:09
That is all for doing my own research. And as long as you have a doctor that will sign off on prescriptions and do your lab work, then yeah, that's all you really need. It's

Scott Benner 1:31:18
a bizarre statement, but mostly true.

Adam 1:31:21
Yeah. Sorry for going back. But I just thought about what we were talking one more thing about, like infants with diabetes is breastfeeding. I don't think we talked about that very much. But in some of like, the Facebook groups for young kids like all the time, you see, like, they just kind of give up on breastfeeding. Like, if you have like an eight month old, or nine months or 10 months or whatever, because it is really hard. And that just kind of like breaks my heart a little bit. Like, if that's like something you're trying to do. And you stop it because of the diabetes. Like, there's definitely ways to figure it out. It's a lot of work. But I guess the advice I would have for that is just like trial and error. And you can't just like wait with the carb ratios that they give you like, I think when we left the hospital, they like did some rough math. Like she had to pump some breast milk. And they're like, Okay, like this much feeding is my this much milk. And then they have like, breast milk typically has like this many carbs per ounce or whatever. So they were like, each feeding, why don't you just try to put an eight carbs or 10 carbs or whatever they said. And it didn't work at all. So like, you have to you have to do trial and error. But I just like you can like you can definitely figure it out and do it. You don't have to give up. Like if that's something you want to do. You don't have to give that up because of the diabetes like, yeah, it's hard, but you can figure it out. And you just think about, there's like a lot of fat and protein in breast milk. So you have to know, it's gonna hit hard at first because there's there's also sugar, but it'll, it'll like kind of stretch out over time. And it's, I think the hard part is like, when you're diagnosed at that young, like, it's so hard on the parents, like you have very little sleep as is because babies already wake up, you know, yeah, once or twice at the night without diabetes. And then with diabetes, it's like multiplied. And but the biggest help with that is having a pump, because you can dose like over time, you don't have to like wake up the baby or dose every like hour or whatever, spread it out and getting diluted insulin. And then like I think the ultimate, the ultimate thing you can do is do a do it yourself loop. Maybe like 75 Five, or some of the commercial options are good enough now. But yeah, just like you can do it, you just have to really try an error. And don't be afraid to, to like do more, do less like change the stuff yourself. Because if you go back and forth with your endo team, like it can take two or three days or a week before they come back with a recommendation on what to change. And they don't really know like, what it's like to care for a kid like even even somebody who has diabetes, like a child that young is so much different than like an adult.

Scott Benner 1:33:52
Oh my god, and where are they gonna get the feedback from about what it's even like from an infant? Right? Like you're

Adam 1:33:58
from it as a parent, you're, you're looking at the graph every five minutes, pick your you have way more data than they had, even if you send them the graphs. They don't know like, you know what time she ate something or what time she had milk or Yeah, like it's really all on you to figure out like you can get some advice from you know, the endo team, but if you don't like if you're not confident doing it yourself, like it's it's really hard to get right.

Scott Benner 1:34:24
That's a good place to stop out. And because that's great advice. So thank you. I really appreciate this. Thank you so much. It's an amazing, amazing experience you've had for such a short time and it's kind of you to come on and share like this so I appreciate

Adam 1:34:38
it. Yeah, of course.

Scott Benner 1:34:39
Yeah. Hold on. What is good talking to you. Oh no, I had a great time. Thank you so much. Hold on one second for me.

Arden has been getting her diabetes supplies from us med for three years. You can as well. Us med.com/ juicebox are called 888-721-1514. My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com to us Med and all the sponsors. I'd like to thank Adam for coming on the show today and sharing this story. And I want to thank you for listening. If you're enjoying the podcast, please leave a five star rating and a thoughtful review in the podcast app that you're listening in right now.

Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

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#1104 Fifty Five and Fab

Denise was diagnosed during the covid crisis at fifty-five years old. 

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android  -  Radio Public, Amazon Alexa or wherever they get audio.

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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
Hello friends and welcome to episode 1104 of the Juicebox Podcast.

At age 55 In the middle of the COVID shutdown, a 55 year old audiologist named Denise was diagnosed with type one diabetes. She also has a 17 year old daughter with an immune deficiency. Of course, her doctor thought she had type two, but you know the story and if you don't know it, here it comes. Please remember 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. 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 juice box at checkout to save 40% at cozy earth.com If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes this episode of The Juicebox Podcast is sponsored by the insulin pump that my daughter wears Omni pod learn more and get started today with the Omni pod dash or the Omni pod five at my link Omni pod.com/juice box. This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us met.

Denise 2:16
My name is Denise and I am 57 years old and I was diagnosed with type one diabetes when I was 55.

Scott Benner 2:25
Oh wow, this just happened? Yes, it did a couple of years. Well, then the obvious questions are is there autoimmune in your family, other people with type one or any reason you would have expected this to happen?

Denise 2:37
Yeah, no reason that I expected it to happen. No type one in the family. No other major auto immune that I know of except some of my own. So I've had minor episodes of psoriasis. I've had I know you've talked about it in some of the other podcasts. I have a history of endometriosis. In I know they're looking at that as potentially autoimmune inflammatory. I have lots of inflammatory responses, did not expect it to happen. And so yeah, kind of came out of left field, have a medically complex and chronically not functionally, chronically, chronically ill child until he was diagnosed with an immune deficiency in the middle of COVID. And so I was chalking up some of the symptoms to stress. I mean, we've all talked about and heard on the podcast of, you know, well, I attributed this symptom to this thing and that symptom to something else and never put the whole picture together. Yeah,

Scott Benner 3:43
you were doing the same thing. Lots of fatigue and

Denise 3:45
yeah, yeah.

Scott Benner 3:47
How old is your child?

Denise 3:49
She will she just graduated high school. She's 17. Okay. All right.

Scott Benner 3:54
Okay, so during. So, this is all happening. Are you having any of the real big classic signs you're losing weight or

Denise 4:02
I was losing weight, but you know, I'm a 55 year old at that point, perimenopausal woman so I wasn't concerned that I was losing weight. I was kind of trying to lose some pounds, right. And it was coming off. I mean, I didn't drastically over the course of about six, seven months, I probably lost I think 12 or 15 pounds, but you know, a couple of pounds a month and I'm working it getting healthier and exercising more and watching what I eat. So I wasn't overly concerned about the weight loss. I was drinking more in an interesting one. And I think you've talked about this one too. I have always been averse to having ice in my drinks, but I couldn't get enough ice. I mean, I wanted I wanted ice water. I wanted ice cold water. I was getting up in the middle of the night and filling a glass with ice. which was unusual for me but I wasn't going to the bathroom and people like Aren't you going to the bathroom? More didn't weren't you and I'm like no I wasn't but you know, I'm a busy mom who works so I ago breakfast, lunch, dinner Bed Breakfast. I mean, so I didn't have time to stay take the time to go the bathroom. But yeah, so fatigue, a lot of thirst. In hindsight, I hadn't attributed this either. I've had lots of orthopedic issues, I was having muscle cramps in my legs, okay. And as soon as I got the diagnosis, I hadn't even told the doctor about that one, too, did the lab work and came back with the diagnosis. And then when I went for the one week follow up, I'm like, oh, yeah, by the way, I've got all these cramps. She's like, Of course you do because you're dehydrated. I thought I wasn't eating enough bananas. And I was working out trying to lose weight. So I thought it was all related to that. Honestly, that's really intense cramping in my legs. Like, it's

Scott Benner 5:42
really interesting to hear an adult tell that story. After hearing so many, like parents talk about all the things that in hindsight, they see and that they wish they would have understood better. But I mean, how are you going to do that? Like you've been alive a long time, you've obviously you're helping a child that has issues you're not you're not, not alien to looking into things. And and still, that's what happened to you? Well, okay, yeah. So what pushes it over and helps you figure it out. So I

Denise 6:08
was having lots of fatigue. This is through the winter holidays. So Christmas time. diagnosis came in the first week of January, if we back up in time, and that summer into July, early August, I was ill, and was in at the doctor, she did lab work. So at that time, she didn't do an A onesie, but she did a cmp and my glucose levels were fine. I think I was like 110 After eating breakfast, like mid morning labs or something. So nobody flagged, oh, wow, that's a problem, which is the general glucose level. So it was all fine. In July, I was ill had a virus had all of the stress around my daughter's diagnosis and her management and her health. And I just was still really, really fatigued coming off a Thanksgiving into Christmas. And I'm like, Okay, I just got to make time for me. I just gotta go the doctor and see what's going on here. Yeah, so she did some lab work, a fair amount of lab work. Did a physician like yeah, I don't, you know, maybe it's a sister, you know, your cortisol levels are probably through the roof with all the things that are going on in your life. You know, and so talk to me about stress relief and trying to balance that. And then she did lab work. And it was on a Friday, very clear. She called me as I was driving to work instead. And so this was during COVID. So I wasn't seeing a whole lot of patient. It's just, well, I'm just gonna say it. You are I was driving to my workplace to get some things I don't typically work. I didn't usually typically work at that time. She's like, you are a diabetic. Now. I'm going to tell you, Denise, I don't think you're a typical diabetic, but I need to start you on some oral meds. I mean, so I think she meant, quote, the stereotypical type two. Okay. So even though I was wanting to lose a few pounds, I was not extremely built as she would expect a type two, I exercise. I have lots and lots of food sensitivities. So I eat a fairly low carb whole 30 type diet I had been for years just because it helps with inflammatory other things in my in my body. And so I felt better when I ate that way. So I ate that way anyway. And she's like, so I know what you eat. I know, you exercise. I know you do this. So I don't think you're typical. But we need to start you on Metformin, we need to start you're on this, we need to do that. I'm like, Yeah, hold the phone. Can we retest? Because this just seems like really strange. Because I agree. I don't know that. I've seen any markers for that. Can we retest tomorrow? She said, Absolutely. Let's hold off. But I do need you to get some insulin. Because my blood blood glucose at that point, I think was it was not high. It was like 300, maybe 300 400 something. My a one C was 13.5. Wow. And she's like, so how do you feel? I'm like, I'm feeling different than I did yesterday, or three days ago, when I was in your office, I'm fine. Like because maybe you need to go to the hospital. I'm like, why I've got this at home. I've got that at home. I don't feel any different. I'm just tired all the time. Why would I want to go to the hospital because they're gonna keep me and she goes, Okay, then I'll send you home. But I need you to get the insulin and probably will shut down Metformin tomorrow, but we need the insulin to get it down right away. And, and we'll retest tomorrow.

Scott Benner 9:23
I love how easy it is to push your doctor around on any thought whatsoever.

Denise 9:30
If you like that, just wait until the next step. So then I go home, I go into work. And I'm like, I don't know that I can do this right now. I was picking up some paperwork and we were trying to schedule some things. I'm like, they just told me I have diabetes. We're not sure what's going on. She thinks I'm pretty sick. I think I need to go home and processes. So I did and I called my phone a friend neighbor who is my walking partner in the neighborhood and she has a daughter who is in her mid 20s now but was diagnosed it 11 with type one diabetic diabetes, and they went to our small school parochial school 200 students, so I mean, so knew her very well. And I'm like, and they just told me I have diabetes. And she's like, I'm coming over. She's like, Look, I know you. And I know this sounds judgmental, but I'm telling you, you're type one, you need to call that Dr. Back. She had called me from her personal cell phone on a Friday afternoon. She's like, I don't care. Call her back, call that number, leave a message. Tell her you want to GID 65 Run, because I'm telling you right now, this was autoimmune. I know you I know your life. I know your lifestyle. Make sure that they run that because we're not getting this wrong from the beginning. Wow. And she was right. They ran it and God 65 The next day, they ran an insulin assay. Okay, so looking at the total insulin in my body. I just pulled that back up to look for the podcasts. The normal range was three to 20 something plus I don't remember the high end because I remember I was 3.2. Right. I thought I didn't have enough insulin in my body. Wow. And the GA D 65. Came back flagged. She's like, how did you know you are right. You are type one, my doctor. She's like, so now I need to get you to endocrinology. And we're not going to start metformin and take that insulin. And

Scott Benner 11:15
did you tell her I asked my neighbor instead of a doctor. I know,

Denise 11:18
right. But it just goes to support what you're doing here too. I mean, again, I talked to someone who lived the life walked the walk. And she's like, Yeah, no, you know, I've been in this space. I'm telling you, I think this is it. And she knew about my other inflammatory issues. I mean, we chat like members who aren't on our walks and stuff. So she knew about some of my health history and food stuff. So the transition wasn't terribly hard, because of the way I ate already. Right? Yeah. I mean, so I didn't have to quote I modify my food, even in the beginning to get hold of it. To get hold of how the insulin

Scott Benner 11:54
worked. Was there any kind of a honeymoon? Or did you have a pretty significant knee?

Denise 11:58
And actually, yeah, fast forward to it. i She's putting an urgent call to an urgent referral to the endocrine office. And they come back and said, We can see you in three and a half months. And then like, I come back, I'm like, yeah, no, that's not gonna work for me. All right. Mind you. I have a medically complex daughter. So yes, I do push the switches around. And they're like, No, but that's when we can get you in. I'm said, Excuse me. I was not just diagnosed as type two. I'm not taking some oral meds. I need to know what the heck I'm doing with this insulin. And you need to see me now. Yeah. And then I got it in three weeks. Do you

Scott Benner 12:33
think that because of your age, they just assumed you were trying to change practices at first, or did they know you were a new diagnosis?

Denise 12:41
No, they knew I was a new diagnosis. Because I didn't call my physician referred me over and said, I have this new diagnosis. All right. You put it in the referral and the endo office called me I didn't even call them I was

Scott Benner 12:52
trying to give them the benefit of the doubt. Yeah, I heard a stat yesterday I don't. I heard a stat and I'm going to tell you, I don't remember any of the numbers. But there are not endocrinologist in like a significant amount of counties in the country. In 2015, I needed support to start making this podcast and Omni pod was there. They bought my first ad in a year when the entire podcast got as many downloads as it probably got today. Um, the pod was there to support the show. And they have been every year for nine seasons. I want to thank them very much. And I want to ask you to check them out at Omni pod.com/juicebox. Arden has been getting her diabetes supplies from us med for three years, you can as well, US med.com/juice box or call 888-721-1514 My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com to us Med and all the sponsors.

Denise 14:04
So it doesn't surprise me yes to again. I had a support network, my neighbor across the street to other families in that small school another. I had children with type one in another family in our neighborhood that also went to our church. The husband had been type one since he was like eight or nine and he was in my age range. So I had lots of resources right away. By the time I got to the endo office three weeks later, this goes back to your honeymoon. I'm like, okay, so I said, here's, here's my insulin. We figured out in the first week, my insulin to carb ratio, My correction factor all with no Basal insulin, no long acting insulin. And so I went in to meet virtually during COVID. I met with the CDE nutritionist first and then I met with a physician but the CDE said Yeah, I Okay, so we'll skip all what we usually tell you because you just told me your insulin to carb ratio. You just told me your correction factor you just told me. She's like, and then maybe in the next appointment, we can talk about technology. I'm like, no, no, no, I want a CGM. And she's like, Okay, well, there are two kinds. I'm like, Yeah, I know. And I know which one I want. And she goes, Okay, well, which one do you want? And I told her and she goes, Oh, good, because that's the one I would have recommended. I mean, so it all went different. But she told me she's like, you know, you will probably honeymoon. And actually, you may honeymoon forever. I mean, the, the way you've described your lifestyle and your food and stuff, you may. Yeah.

Scott Benner 15:38
adult onset sometimes can take forever. She might have thought maybe you but maybe she's a lot, a lot or something. Right.

Denise 15:44
And so, but I go back to I had labs six months before that were normal.

Scott Benner 15:49
Yeah. So the onset was really fast. I think the onset was really fast. Yeah. Also you the way you describe it. I don't think it was not just fast. But I don't think it had been very long either. Like when you when you look back, right? It wasn't something that lingered for you're here, correct? Yeah,

Denise 16:08
I'd say six to seven months that it was kind of building up. So interesting, though, then as we go back. So she's like, I think you might honeymoon forever. I think we may have you in this special box over here by yourself. You know that. But I think I'm coming out of it now. Because in the last few months, I noticed a difference with fat and protein. I mean, because before that fat and protein, I'm like, yeah, they could talk about this fat protein rise and Warsaw method and all this and I'm like, I don't see that. I don't see that in my lines. I don't see issues with that. But now, but now I'm starting to

Scott Benner 16:43
they're letting me out of that special box. So

Denise 16:47
I'm trying to claw my way back in to the mainstream here.

Scott Benner 16:50
So in your mind, what shape is the box?

Denise 16:53
In my mind? I think it's a very special diamond shaped box.

Scott Benner 16:57
Oh, that's lovely. I was thinking that Nirvana song heart but wait is that isn't Ivana song heart shaped box? Or is that a remake that nirvana? I

Denise 17:06
don't know. My husband's the music person in the family? I

Scott Benner 17:08
don't do I don't think it matters. Also, I think a lot of people listening are like, what's nirvana? Yeah, yeah. But I knew that I knew you're old like me. So I figured, yeah. So okay, so you're, you're married, you have kids? There's a lot going on in your life, this happens, not something you're expecting. How would you say you accepted the news?

Denise 17:30
So I mean, it's like, okay, fine, especially with my phone a friend, if this is what my life is, let me get this figured out. I am, as I described myself a type a firstborn, OCD control freak. So I'm like, Okay, I don't have mental space for this, because I got all this stuff going on with the other family members. So tell me what I need to do. Let me get this figured out. My walking buddy is an engineer math person, who's so we're like, okay, so she's like, I'll step you through. I mean, and so we got it figured out right? For me. I'm like, I don't have time to deal with it. So I just need to get it figured out, too. I found juicebox Facebook page. So diagnosed in January, how to CGM by mid February after fighting with the insurance for a couple three weeks. And then I started dash in May. Well, the CDE said I could start them both at the same time. And I said, Thank you. I've got a lot going on. I think I want to learn learn one thing and get it and get it figured out. And then I'll add something else in and I was fine. My doses were low enough with MDI that it wasn't like I was trying to push in tons 1015 units at a time. I mean, my Basal dose was four units. And if I was taking three to four units at a meal, because I also ate and still eat so low carb that I wasn't taking much in. So I'm like, the injections really aren't bothering me. Let me get the CGM. And I mean to tell you, I had it two days, and I had a sensor failure. And I put on a new sensor and then transmitter failed. And then I called my friends with these other families. And I'm like, I can't I don't have it. They're like, No, we told you you as soon as you got it, you were gonna love it. And you were gonna have a love hate relationship with it. Because as soon as it goes out, you're gonna go What do you mean? Where's my data? And finger breaking? You know, to get the trendline? I mean, within two or three days, my engineer brain is following that. trendline. Can I missed it?

Scott Benner 19:24
I have a question in the beginning when you had a failure of the device, right? Have you had a lot since then?

Denise 19:30
No, no, it was just a fluke thing at the transmit. I mean, so the sensors. I think maybe in the two and a half years, I've had two or three sensor failures total. So that first one, so not really, but I don't know why that transmitter failed sensor failure, user error. Listen,

Scott Benner 19:47
I wasn't there. Right. And this is anecdotal at best. Yeah. But a lot of the failures, I'm not that stuff doesn't fail. I'm not saying that. But a lot of the failures that I see online are very frequently with people who are newer to the equipment to

Denise 20:01
well, it was interesting because it didn't fit. It feels like on day three. Yeah. I mean, so it wasn't after an insertion. So then the sensor failed in, in. So I don't know if I damaged the transmitter trying to get it out. I don't, because then I put in a new sensor, and it started giving me a transmitter error. And I'm like, What the hell? Like no, no, no, the center was bad, not the transmitter, and I called support. And they're like, well, we can get you something in a week. I'm like, You don't understand. I just got this. And I don't have a backup yet. I've built a backup.

Scott Benner 20:33
Again, not to say that that's what happened to you just anecdotally, i That doesn't surprise me. Also, a favorite of mine is there is this person a couple of weeks ago in the Facebook group. And she's an adult, she hasn't had diabetes for very long. And she's like, there's something wrong with my pump, I'm going to change it changes that change. And by the time I'm watching this thread, she says, Well, I've changed my pump three times. And I'm like, I got it. And I was like, hey, stop doing that. I was like, every new site doesn't work great. You're just staying in this, like, just leave it on, push them insulin through it. And that's the thing you learn one day, and then that doesn't happen to you anymore. And it's just, I mean, it's very common. And again, not that this is what happened, because it doesn't sound like it is but when it's always interesting, when people then jump online, they go, this stuff doesn't work. And I'm like you've been using it for eight seconds. Why do you think you're the arbiter of what works or what doesn't? It's just interesting. That's all I

Denise 21:27
deal with that professionally, too. I'm an audiologist. And so then I'm prescribed hearing aids. And for the last 10 years, I've worked with the VA. And so then trying to explain technology and Bluetooth connections and medical devices. So so when I when I got the news that Oh, well. Yeah, don't update your your iOS yet, because we got to work out the bugs first. I'm like, Oh, well, yeah, of course. Because that happens in the hearing aid world, too. They're like, that makes sense. Used to answer my phone. And now it doesn't it rings different and why does it keep alarming every time I get a text message? And I'm like, okay, here, let me help you with your settings. So I mean, so I get that. And

Scott Benner 22:04
so I'm incredibly amused and managing. You're sitting in a room with an older person like yelling. It's Bluetooth. It's Bluetooth. It's how the phone connects. Can you hear me Bluetooth? Yeah.

Denise 22:16
So different hearing aids connect differently. So along that same line? So then I'm like, do you have an apple or an Android phone? Or do you use a flip phone? And they're like, I don't know. It's a Verizon phone? I'm like, yeah, yeah. And so I mean, I'm very much Okay, so now we do you have a computer? Yes. Okay. So you know, like Windows is part of it. And then you can have a, you know, a Dell computer and you get your cable service in your. So I don't want your service provider. I want the brand of your phone. You're already Verizon.

Scott Benner 22:48
Yeah, you're on my phone. This seven, the eight and the nine are in a line. Do you know which one that is?

Denise 22:55
I know. Right. So yeah. So so I get the work through the troubleshooting and stuff. So yeah, I don't know if that's what happened. But it was for sure knew, but it was for sure I was depending on that. And then. And then like, yeah, you won't care as much if a pump goes out as you will if that CGM goes out once you get rolling with this technology, and I totally agree with that.

Scott Benner 23:14
So where why did we have you on the podcast?

Denise 23:18
You reached out and I said I'm an adult? Who started on Omnipod five. Oh,

Scott Benner 23:23
so wait, but you're using dash now? No, no, no.

Denise 23:27
So I had the dash within a few months. So then I Okay, diagnosed in January of 21. CGM. I got a Dexcom in February of 21. Dash in May of 21. In Omnipod, five in June of 22.

Scott Benner 23:40
That is definitely why I wanted to have you on because to ask this question, but when you kept saying dash, I was like, oh, maybe she just went back? No,

Denise 23:48
no, no. So I switched that. No, that was just what I started with. Okay, so I started with, it was interesting, because the adult that I talked to in the neighbor, I mean, the my go to resource, I told I asked all of them, okay, so how long? Do I need to wait till I get a pump? And they're like, it's going to be six months, the insurance will make you and the doctor's office will make you and I'm like, Yeah, well, I don't know about that. I'll get it when I'm ready. Okay, but, okay. And so, in, I said, Tell me about the different kinds of pumps because I knew the families that had children, even high school aged children used Omnipod, which tubeless was very appealing to me. And then the adult use, I think he's Medtronic, he had a tube to pump. He had just switched to a TCM I think when I talked to him, okay. And so, he said, I said to what can tell me, I'm an information gatherer decision maker type. So I'm like, so tell me about tell me about tell me about and I said, So what time, what time, how long and what kind and he's like, you'll probably want a tube to pump because they'll hold more insulin. So you'll get 300 units into the cartridge versus a tube pump. You can only put 200 units and so that was probably cycled through faster. So you probably will end up getting a tube to pump like, Okay, file that away. And I'm like, Yeah, I want one of those. And then I'm looking at my charts and my data log and my paper and pencil notebook. Because I'm old, I did paper and pencil for about three months. And then I went to an app, one app for a few months. And then I switched over to sugar main app and tracked all of my exercise all of my carbs, all of my food and everything in there until I remember hearing you say, and I'm like, I don't know that I'll ever get them to type a and I'm like, yeah, no, I'm over it, tracking all of it. Like, yeah, no, that's about No, I'm in a way that learns a potato or because I eat carbs. So infrequently. Those I need a little more specificity and but he's like, you're gonna want the more insulin. I'm looking at my charts going, you know, right, even out of honeymoon in Bolus seen for fat and protein bumps to correct. I use about I can get the 80 hours and I use about 80 to 100 unit. Yeah, was that at our Ardens

Scott Benner 26:06
insulin to carb ratio is like one to 4.7 right now or something like that. And she doesn't have any trouble using it on the pod. It does. It does the 200 units doesn't run out and Shinto

Denise 26:16
minus one one to six right now.

Scott Benner 26:19
No, no, I

Denise 26:21
mean, I eat but I eat so look few carbs that it's like, I don't even I learned the hack on how to underfill them to begin with. So I wasn't throwing out

Scott Benner 26:32
your Facebook group, you think you only need ad units to initialize Nami pod? Is that right?

Denise 26:38
That's what they tell you. Okay.

Scott Benner 26:42
I don't know if I'm allowed to say what that what's

Denise 26:45
actually my my, my mom trainer, I had told her I'd heard about a hack. So maybe use a little bit she's like, we and again, I've worked in medical device. As an audiologist, I actually worked for a medical device company for about four years. So worked with the FDA FDA approval, so totally understand that process, too. I'm like, I understand you cannot support this. I also very quickly started putting my Dexcom other places when I saw that in European markets and other places it was approved. I'm like, Well, this is an FDA thing. So I'm going with that. But she said what I can tell you is when you hear the two beeps, you can stop. Right? Okay, so there is a way to get the two beeps to happen with less than 80 unit going

Scott Benner 27:29
slower. Interesting. going slower. Yeah, I'm never gonna,

Denise 27:33
she's like, I'm not gonna tell you how many units I'm just gonna tell you. You may stop when you hear the two beeps. I'm like, Thank you.

Scott Benner 27:37
Good enough. You just made me laugh. Arden had she's on g7 Now Dexcom g7. And she had one failure of it. And we were trying to figure out what happened. And so we were actually on the phone. She was a college I was home, we were like three way calling with Dexcom trying to work it out, like figure out what was going on. And the guy on the phone says, Where are you wearing it and Arden's like, like Oh my God. And he goes, it's not approved for their art and goes, You think my guess is the problem? And I'm like, This is hilarious. It's so we're on the phone. And. And he's like, he's like, Well, no, you're trying it on your arm. And she goes, I'm gonna put this on my arm to make him happy. She's texting me like outside of the things she does. But there's no way she's like, I have bigger problems If my guess is the problem. And I was like, okay, and it turns out it was not us. And but I mean, I think I think Ardens wanted Dexcom on our arms. I have four times in her life maybe, you know, like and she's been wearing it for years and years and years and years. So it's not FDA approved for where she wears it and it works terrific there. Right so what are you gonna do so on the pod five algorithm, but on a lower carb like lifestyle? So can you tell me how many carbs you eat in a day approximately? 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 888721151 for a huge thanks to Omni pod. Not just my longest sponsor, but my first one Omni pod.com/juice box if you love the podcast, and you love to boost insulin pumps, this link is for you. omnipod.com/juice box, usually

Denise 29:37
probably on, quote heavy day where we're out at some kind of activity or celebration. Maybe 100 to 120 but on an average day, it's usually like 60 to 80 Okay, and how to fruits and vegetables and proteins is where most of that comes from

Scott Benner 29:55
and how active are you the course of a week.

Denise 29:58
I used to be more active because at my new position with the VA, I'm 100% remote seeing patients via telehealth so I now sit at my desk 40 hours a week before that I worked part time. And so I was up and about in the part time was in person patient care as an audiologist. So I was up and moving a whole lot more so not as active. So I have noticed a change in actually talked to my new supervisor and said, I think I need to make some changes here. And I may need to plan because I don't get up even to quote, go get the patient from the waiting room anymore. So I show finishing chart notes. So I'm sitting, we're in this 40 hours a week,

Scott Benner 30:40
I have an idea. Most people would say, get a standing desk, but that's an investment. What about one of those carts? Like it's a standing rolling thing, you're like, your laptop would go on it, there'd be a little bit of desk space in front of you. And you could like move around with it while you were walking. I don't

Denise 30:56
know, because I've got three monitors because I'm doing diagnostic testing. So I've got one that's a video audio feed. I've got one that's the remote computer where I'm running the audio metric equipment. I've got one where the charging is going.

Scott Benner 31:09
Oh, I didn't know you were very special. I didn't know you work at SpaceX. Okay.

Denise 31:13
Yeah, yeah, exactly. Right. So no, I worked for the federal government. That's who I worked for. Gotcha. I worked for the VA.

Scott Benner 31:21
Oh, nice. So I mean, it's a it's a great job. But yeah, you're gonna have to like, Hold

Denise 31:25
on, I need to build in breaks and stuff. I said, I'm noticing a difference.

Scott Benner 31:29
Have you seen? Have you seen the little pedals that you can put under your desk? No, but that

Denise 31:33
might work. Because that I mean, yeah. So I have noticed a difference. I was more active. So I do workouts and stuff. And I'm still doing those, but the day to day activity has gone down. Now

Scott Benner 31:43
I understand. Okay, well, but But So how was the device working for you? Because that's one of the things you hear people go like, well, I don't know, like, what if I'm very low, lower carb, like how's it going pristinely?

Denise 31:52
It works really well. And I'm, I'm after this trip contemplating a reset, but I was one who very quickly ascribed to your here, set your ranges and set your target. And so I again, I was pretty obsessive about my numbers and my math. And so when I was on the dash, I, you know, had those nighttime targets at 85. And I rode at 8587. All night. Yeah, I was very concerned, my a onesie was gonna go up. Because that's just a thing that we all worry about. It actually stayed the same. So I got the dash in June, my next a onesie was that following August, and it was exactly the same as the one six months before. Great for you. And then the next one went down. So even though it still says that it's targeting 110 I'm still holding my own in the mid to low fives.

Scott Benner 32:46
Well, good for you. And so Wow, how far did it drop? When when you saw the drop?

Denise 32:51
But not I mean, within those tolerances? I went from a five, four to a five one. Okay, so

Scott Benner 32:57
I mean, jeez, that's amazing, though. So that's a lot to do with your your diet. You think? I think so? Yeah. What do you eat mostly?

Denise 33:05
Fruits, vegetables and proteins and things. So I mean, I'll, I will eat and we will bake, but I'll bake with almond flour. So I am grain free. So no corn, soy, no corn chips, no flour. No wheat flour. No oats. No rice.

Scott Benner 33:21
Is that because of your inflammatory stuff? Yes. Okay. So

Denise 33:25
I was eating that way before the diagnosis. Yeah. So my number ratios, I'm still look to be most days. 3070. So 30%, basil. 70%? Well, I mean, so they are off. But yeah, I'm about sugar mate says I'm 90% in range with a range of 65 to 140. Oh, that's

Scott Benner 33:46
terrific. Good for you. Well, congratulations. That's really wonderful. You know, I so

Denise 33:52
it's been a learning curve. That was the thing I wanted families to know, I think coming at this as an adult, there was a huge shift, once I went MDI, to dash. And in a whole relearning, and it took almost a month to stabilize, again, mentally numbers ratios to kind of relearn the whole system and how my body is going to react with the variables. And then a year later, when I did it with Omnipod, five, it took, I think, three to four weeks before I settled in, and that's why I thought the agency that was just going to be a couple months later was going to be off, because there was absolutely a learning curve. Significantly more lows, significantly more highs, trying to kind of get it balanced.

Scott Benner 34:34
And it took you a few weeks to get it straight. Yeah.

Denise 34:37
Each shift. There was absolutely a learning curve

Scott Benner 34:40
on your own too. Right. Do you have anybody helping you? I mean, besides your walking buddy, my walking

Denise 34:45
buddy helped me and it was very interesting because once I started listening to the juice back so her daughter has married and grown and lives in another state. So and then we've got the other couple of families but it was once I started and I've been telling them all about juice box Once we started listening to juicebox, so I was in the Facebook group mid spring, somebody had recommended it in, I think, a Dexcom group. And so I was watching the Facebook group and I'm like, I don't do I don't have time to do podcasts. I got all this health appointments. I got these doctor's appointments. I don't have time to do podcasts. Yeah. And then I got a COVID vaccine. Right? And then I was laying in bed. And then I'm like, I got this. So like, I binged over those couple of days. And then I'm like, oh, no, I'm sold. I gotta find a way to make time to listen to these. Until then my support network, then we kind of transition she's like, and I'd say think she's like, wow, she's like, No, no, no, I think the student is being I think, you know, more now than I helped you with. I'm like, I couldn't really got started without you. So in some of those other families, I'm like, these things that I hear you saying that are problematic, or that you're concerned about or whatever? Maybe they weren't? Yeah, maybe maybe you can listen to and there might be some solutions. Check this out. I learned this here. Try this.

Scott Benner 36:01
That's so nice. I'm glad to hear that.

Denise 36:03
There are no I talked about you at the airport to like clear in security. And they saw my things. I'm like, oh, yeah, you know, I'm like, I'm like, get my CGM. And they're like, what about this? And what about that? I'm like, Yeah, but if you really want to learn, you need to check out this podcast. I write it on a sticky and handed out.

Scott Benner 36:17
You're very nice. Thank you so much. And probably part of what's happened been happening to me the past week, I have been recognized in public three times in six days in three different states. Really? Yeah. It flipped me out. Honestly. Yeah. happened in Georgia. at a gas station, it happened in South Carolina while driving on the highway. And they're

Denise 36:44
like that just box bumper sticker that that guy has, wait a minute, that's Scott driving,

Scott Benner 36:48
I swear to you a car like kind of drove by me a little and then it dropped back again. And then I looked over thinking like, Oh, I'm going to be shot. Because it was really, it was very strange, you know, and I just looked, and there's this gentleman there. And he's like, like, I think he was like pointing like I like pointing it himself. They pointed his ears and then pointed at me. I listen to you. And I was like, okay, and I thought, Well, that won't happen again for a while. And then we got back home, and art and needed makeup. So we were at the altar. And this, this lady is coming through the door. And she's got like, she's putting her phone in her pocket. But I noticed I just have we're walking to the register. And she's coming in the door. And I noticed that her flashlight was on when she stuffed her phone in her pocket. And we happen to intersect each other. And so I said, Excuse me, I noticed when you put your phone away through the flashlight was on. And I think she just thanked me and we got in line art and I paid and we're getting ready to walk out. And then she's sort of there again. And I was like, and she goes Excuse me? Do I know you? And like, but I'm close to home now. So I think like, I'm looking at her. She's like, Seriously, she's my ages. Yay. And I'm like trying to figure my way through that. I'm like, I don't I don't know, like where we're from. And she goes Facebook. And my first thought is I'm never on Facebook. But I'm never on Facebook is me. Like I'm on Facebook constantly managing the group, right? But my stupid brain just goes like, No, I don't I don't I don't really use Facebook. And then she just goes diabetes. And I went, Oh, yeah, you might know me from that. And then we chatted for a couple of minutes. And then we walked outside. And Arden goes, Yo man, if people are going to be recognizing you, you really have to like step up your game. He she's like your shirt doesn't even match your shorts, right? And I was like, Well, I was making the party all day. And then I took you to the altar so I could pay for your makeup. So like I'm like, like, just like just give me the money next time. Yeah, she's like, you want to dress better. She's like, you're dragging me down. If people are going to recognize you, they're going to then they're gonna see me and I was like, okay, she was an Ilocos. So like, I was like, alright, but anyway, thank you for for sharing the podcast with people so much. Honestly, when you're talking about it. It's so heartwarming to think of how well it works. But I have to tell you my brain almost immediately after it feels good switches to like, I'm like, Why can't you reach more people dummy? Like, like me, like, like, like, how do you get to I guess I can see the numbers in my head. Ya know how many devices everyday download the show how many episodes they grab, I hear your experience. And I think, Oh, I'm not reaching enough people, you know, but that's

Denise 39:34
the way of the world and that's the way of medical we do the same thing to do you know how many people who have hearing loss actually have hearing aids?

Scott Benner 39:40
Yeah. Or once they have them can use them and can use

Denise 39:44
them or how long it takes that that statistic last I read it it's like seven years from onset of when people know they have a hearing loss before they'll actually even try one and then if you can get it to get them out of the drawer, right. So I think it's the way of the world and

Scott Benner 39:58
I know it's not my fault and I also know the podcast overwhelmingly reaches more people than probably any other thing in this space, to be perfectly honest, but it still feels like it just still feels like you're not doing quite enough like because there's someone like you, not just someone like, Look, you had this circle of people around you who all were like telling you what to do, and saved

Denise 40:19
my life, literally and figuratively got me off on the right foot. I mean, I hear these horror stories of being misdiagnosed as an adult and in that could have been it could have gone that way very easily.

Scott Benner 40:31
But in a short enough amount of time. It's two years they're looking at you going wow, you know a lot about this. Yeah. Yeah. And then I think, why didn't reach any of them? Yeah, like, that's how it feels yet so, but we had, I mean, I don't know we're working on I'm getting old. Like, I gotta get to it now. Yeah. I

Denise 40:46
did have a couple other things that make my story interesting. The, the, oh, now I'm gonna have a total blank out. The survey, type one survey.

Scott Benner 41:00
The one I did? No. Exchange.

Denise 41:03
That's the one. Okay, so I did that before I found the podcast. But one of the things that they asked about that I'm like, Oh, see, I knew it. I knew I had to frozen shoulders. In 2018 2018. I ended up having surgery on one we couldn't get it going and the orthopedic I went back to the I said, as I'm still in PT, about four months, four weeks post op, I said, I think the other one's going he's like, No, I'm like, No, I think the other one's going No, I know my body I got he's like, that'd be very unusual. I'm like I get it I think and he looked at his like the other ones going saved myself a second surgery but so I had two frozen children's who's like you know, do you have any autoimmune things going on? I'm like, like, just the psoriasis as a kid I mean, on and off minor minor that kind of self treated with cortisone. After we learned what it was not major flares, but that in a little rosacea, and the endometriosis, I'm like, so no, not not major stuff. He's like, I think you need to talk to your GP, I think they need to look for some type of something because I wonder if there's something autoimmune because we don't see the two frozen shoulders. It's unusual. Like okay, so she did kind of a workup with just a basic sed rate and a Basic panel at that point to didn't find anything. Did we check for the five t one D antibodies? No. But then so I'm wondering even if that was predisposing again, if something was happening in that, I don't remember what they call it. Now. They don't call it pre diabetic. But if something had tripped in that I had the antibodies and there was damage being done but my pancreas was still cranking out enough insulin that I didn't

Scott Benner 42:48
where maybe the auto immune implications even from the major frozen shoulders led to the type one to what can you breathe still

Denise 42:58
the type one d the T Wendy exchange asked if as an adult if if I had had a history of frozen shoulder that they put that in the Okay, the red flags?

Scott Benner 43:08
Can you briefly describe what it was like the frozen shoulder? Yeah,

Denise 43:12
it so it literally is what it says so that it's something with the nerves and the capsule in the shoulder tightening up so that I couldn't move so I would get shooting tingling pain downs, my arms in gradually to avoid that I stopped moving is where the directions where that goes, right? Because that hurts. And so then I would get less and less range of motion. So I mean, I couldn't hardly move my arm at all on the first side. And so then basically what they do in the frozen shoulder surgery is they anesthetize you, so you don't feel it. And then yeah, busted around. Yeah, yep. I've heard and then so the other side started doing the tingling and stuff and he's like, no, no, it's the other side just fatigue because you're compensating and I'm like, I get that but I've also had six orthopedic surgeries on the ankles. I've got a fused ankle got a complex medical history with or the peds and I'm like, I know what my body feels like. And there's a difference between sore and pain and fatigue from overuse. I'm telling you, I'm getting a tingling in my fingertips again, and it's the same thing going on and he Chinese like you do have, like,

Scott Benner 44:17
what were the surgeries on your ankles for?

Denise 44:20
I had a congenital bone defect that there was an extra piece of bone that connected my heel to a part of my ankle. They started bothering me when I was 10 on one side. And then five or the peds later, I got a correct diagnosis when I was 16 went away to college. At that point, they told me it was probably in both ankles, but they didn't check the other side because it didn't hurt. They told me they could do surgery, they would have to fuse my ankle and it would be six months in a cast and my leg would forever be atrophied compared to the other and we're like yeah, we'll just grin and bear it a little bit longer. He's like, you know, I get the pain but if the pain is manageable with pain meds, let's wait The time I got to college and went to a big 10 campus, I was walking everywhere and activated in the other foot. It was not manageable when it's an orthopedic there who sent me to a specialist in Chicago who said, wow, you're kind of old for this. Usually we see this when people are 1011 12. I'm like, let me tell you my history. So I'm one surgery on the side that it only had been going for two or three years, and it took five surgeries, a fuse ankle, that didn't totally work. So they went in and broke some bones and realigned things and redid tendons. So

Scott Benner 45:31
wow, that's so crazy. How long have you laid off from that.

Denise 45:34
And by that point, I wasn't laid up six months, I was laid up six weeks. So I mean, I had a walking cast, I was able to bear weight. And three, four of the surgeries, I was able to bear weight coming straight out of the hospital. And on the other two, I was weight bearing within four weeks, and then a cast eight weeks, so crazy. So in those five years, medical technology had advanced enough that the grim prognosis that they gave me when I was 16. By the time I was 21, was not so grim. That's pretty

Scott Benner 46:04
great. Do you have any? Like, what are your better, like best tips for on the pod five? What have you learned along the way?

Denise 46:14
Um, I've learned exactly what you've said to trust what you know. And it's amount about a mountain timing. So that even though oh, this was one that I heard on one of your recent podcasts, so changing the numbers in automated mode, does it change anything, and I've decided that when I changed my insulin to carb ratio, it doesn't change the automated per se, and how much it micro Bolus is, but it does change what it predicts I need for a meal. Okay. So it changed, it changes what's in the calculator. So it changes how much I'm going to give myself yeah, so but I have not been afraid to override what it says, again, trust what you need to know. And so I know it's going to take some away, right away after I Bolus, it will stop there micro doses. So then I gotta calculate some of that into what I'm doing. So I have the autocorrection off. But if you use the calculator and use the CGM amount, you can only turn it off so far. So it still wants to take some away. And so I've learned to trust what I know is going to happen in either except depending on the activity level, except that reduction or say, no, no, I want the full amount.

Scott Benner 47:29
So you've just basically taken good practices and applied it to how the algorithm works.

Denise 47:34
Correct? Yes. Okay. I just recently listened. And I'm sorry, I don't remember anything. But the team player when I totally agree with that, the episode where the title was even a patent five as a team player, that, that I take what I know, and use that to make my life simpler. Again, just to give me more bandwidth to deal with the rest of the stuff that's in my life. Yeah,

Scott Benner 47:56
I think it's valuable if people can get out of their head that the any pump like me modifies what we're talking about, but any of them yeah, that are automated, that they're just gonna be perfect. And you're not gonna have to do anything. Like, if you can just get rid of that idea. At first, I think you're going to be much better off and then you know, do what you know is what works. And then when it's when it's smooth sailing, just enjoy it like overnight. I imagine your overnights are probably great with only about five, right? Yeah. And, you know, times away from like, heavy carbs are probably terrific stuff like that. Yep. Yeah, it's just what's

Denise 48:30
hard for me with the pump is that I don't eat heavy carbs. So when I want a gluten free piece of birthday cake, or my daughter has graduated from high school, if I wanted to have things because I don't have celiac, I know that these things that I avoid what they'll do to my body, but they're not life threatening or dangerous in the long term. I fully believe from all of my physicians and understanding of how my body works, that I have these food sensitivities and inflammations. Because of the decades that I took NSAIDs as anti inflammatories to manage the pain in my orthopedic issues. Oh, interesting. So my gut is not what we would prefer it to be working on healing that. And so I know what the food sent. And so corn will give me rashes on my elbows, arms and feet. I mean, so that I know what so if I choose to do it, just to enjoy what the group is doing, then I don't know what to do. I mean, because then I'm doing my best guess, but I don't have enough experience to know. How much do I give up front? How much do I give an hour later? And so that's where my spikes come from? Is just still I feel like I'm even though I'm several years in early days in the learning curve, because I don't eat that way often enough to know how to manage.

Scott Benner 49:51
Yeah, that's very interesting. And, you know, I just did, I mean, I just put up an episode today with the founder. of beta bionics. So they have that new islet bionic pancreas. Yeah. And we spoke for two hours. And it was clear what they did was they they made a device that can get your a one C to about a seven. But it's with almost no effort. And I realized as he was talking like at first I thought, oh, people are going to be like, Well, why don't why can't I do it for this? And then I just thought like, why are we talking about what it isn't? Like, like, look at what it is, is yeah, there are so many people living with double digit a one sees who are going to have terrible ends so much sooner than necessary. They can't, can't won't excetera of what doesn't matter the reasons, right? They're not getting diabetes, right? The way you're getting it. And you're telling me I put this thing on them? And yeah, their blood sugar's he said like, you might see spikes to 200, they might stay for a while, but they're gonna come down. And when it's all said and done, you might have an A one C around seven. And you know, and I thought, well, that's great. Like he's targeted a section of the population who's suffering greatly, who was never going to get relief. And you know, and I'm my thought was, is I don't want the online community are people who are doing, you know, like, who understand that the way you and I do to be like, well, that's not good enough like, for you. It's not good enough. It's an insane improvement for them. You know, and so, I don't know, like, I just think that it's important to talk about it that way. And I don't know if we have always so anyway,

Denise 51:32
support network. The other piece, I just had that note down here, too. Yeah, there were two other pieces as we're kind of looking at the end here. The other piece that made my case, I think, interesting, and a little bit of more of a stressor. When you asked how I accepted it, we had to get over one hurdle, which is my dad died of pancreatic cancer. So with this fairly sudden onset of mine, the endo did immediately once I got in and three weeks order a full CT and panel to make sure that that wasn't why my pancreas suddenly stopped

Scott Benner 52:04
working. Oh, good. Yeah, that was worth looking at. And I'm glad that wasn't. And then

Denise 52:08
once we got past that and went, Oh, no, that's not it, then then it was easier to accept. And then I do have a husband at home who is very helpful and does 95% of the cooking and so forth. But that has been a training piece to all my anti inflammatory. And then I'm like, No, but this matters. We finally had discussion when I'm like, no, no, no, you are balancing all this. And I so appreciate all of the cooking you do and all of the help in the grocery shopping and all of that, but, but you don't get to tell me that you just adjusted this a little bit, and it won't matter and it won't hurt because you don't know how much exercise I got that day, or what time the sun came out or what time my shower was, or if I just had a pot change or not. So I do most 90% of the management. But it's hard. Because I do 90% of the management in that 10% of the time I need help. He doesn't kind of like me with the carbs. He doesn't have the experience to help. Yeah, well, let's one to help. But he doesn't have

Scott Benner 53:06
a boy, you'll be training him his whole life.

Denise 53:07
Right. Now, so those were the last couple of things. I mean, the CT scan, and then the fact that Yeah, so I mean, I remember one time, he went to go get takeout for us. And I'm like, No, I need to eat. And this was early days within probably the first couple of months. And I think the first month I don't know, I think I was on MDI and he went to go get takeout. So I didn't dose before he went, but my numbers are all over. I'm like, I need to eat, I need to eat because my numbers are dropping. And I haven't dosed and I'm just in that honeymoon. And there was a problem at the store and his phone died because he's a boy and he didn't hadn't charged it. And so he's sitting in the Mexican restaurant getting ready to bring home food and have a margarita and I'm like, where is my food? And I can't call him and he came back and I'm like, You didn't you are gone an hour and 20 minutes and why were you gone? And he's like, why didn't you order takeout? And unlike, because I couldn't remember how my numbers had I mean, the brain fog that comes. That was the hardest part for me as an adult, especially a type a firstborn control freak, that I didn't seem that I noticed I have that mental fog, up bleeding on the uptick to diagnosis. But when we started bringing my numbers down, I remember very much trying to balance some of my daughter's medical records and my mom helping me and I'm going no, my brain hurts. No, I don't have a headache. I just I can't think

Scott Benner 54:28
Yeah, and that's something I am like, look what happens. Just one Margarita and look where you ended up.

Denise 54:33
I know, right? Yeah. I mean, I can't I can't think I mean, and so the loss of that, and I had no vision problems until they tried to break my sugars down. Yeah, that happens too. Right. So they said aren't wasn't your vision blurry before? I'm like, No, it didn't seem to change. It didn't. So as my sugars were rising pre diagnosis, I didn't notice a difference. But as soon as we tried to drop on my dead Yeah,

Scott Benner 54:57
I have a thing for you at the end here. So I want to ask you Before I get to that, if we've missed anything, or or No,

Denise 55:03
I knew you're gonna ask. So I threw those couple of things in about the CT scan and about my husband. So I'm good. That was my list.

Scott Benner 55:09
I'm gonna thank you for a second. Okay. You very much by mistake or the perfect person to be on this podcast today, and this is going to seem sad, but it is sad. But about two or three hours ago, I was woken up from a phone call that my mom was having a stroke. Oh, no, she's no your mom's had health. Yeah, she's in surgery right now they're removing a clot and talking to you really helped to pass this hour for me. I really, I really appreciate and because of your type a nature. I think when you started talking in the beginning, I thought, Oh, good. I'm not gonna have to talk too much. But at the same time, just having this conversation, I got lost in it a number of times, I forgot about what was going on. It was really helpful for me. And as I was, as I'm watching, I got people don't know like, I there's a timer running in front of me while we're talking. Right. So it counts up. Yep. And I know you're on a schedule here because you're you're you're on vacation, which is lovely of you to do this during vacation. I also like new, like that number is going to get to the end and I'm gonna, I'm gonna get back on the phone and get back on the phone and find out about my mom. So I am actually going to get off with you in a moment. I am going to I'm going to look oddly, I'm not choked up my my throat just I am going to look for flights and I am going to come and we're going to my brother and I are going to fly out to where my other brother is and see my mom. We have no idea what's going on. I spoke to the surgeon to make the last decision about what to do. We got this talk. We talked to my mom before she went into surgery. But anyway, this was really he did a really nice thing for me today. You don't know it. So thanks. Thank you. Thank you. Yeah, I appreciate it very much. If you hold on for one second, I'll check button this up for you. Yep.

Oh, a huge thanks to Denise for coming on the show and sharing her story with us. And I also want to thank Omni pod for being a longtime sponsor remind you that you go to Omni pod.com/juice box to learn more and get started. Don't forget about us med us med.com forward slash juicebox 888721151 For call or use the link. Get started today with us med if you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

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#1103 Cold Wind: Healthcare Whistleblower, H.R. and Insurance Professional

"Anonymous female" is a former Human Resources professional and current Insurance company employee.  Her voice and name have been changed to protect her identity. 

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android  -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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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
Hello friends, welcome to episode 1103 of the Juicebox Podcast.

I'm back today with my second installment of the cold wind series. On today's show, we'll be calling our guests, Laura. She is on the show today because she has worked in human resources and in private insurance 23 plus years in human resources, and she has seen some. Now Laura works in insurance where she's also seen some if this one doesn't kill you right down to your you know what's nothing's going to. 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 are becoming bold with insulin. 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 juice box at checkout to save 40% at cozy earth.com.

This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us met this episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next one.com/juice box.

"Laura" 2:11
My name is Laura. I have two type one children for the past like 23 for 23 years, I worked on the benefit side of it from HR standpoint, like for your company. And then the last like year and a half or so I made the change to work at the actual insurance company.

Scott Benner 2:33
You work for those people. Yeah. You have two sons. Yep. They both have type one. So this is all within the last four years for you. Yes. Okay. Do you have type one?

"Laura" 2:45
I do not have any other autoimmune issues? Yes, I do. And all four of my children also have some sort of autoimmune. So

Scott Benner 2:55
hypothyroidism for you know, mine

"Laura" 2:57
is more of a Lupus issue. My daughter has Hashimotos and my son has grave. The older one of the younger one. His twin brother has graves. Four kids, my 21 year old has Hashimotos you have lupus diagnose diagnose lupus. No, not yet. We're still in that process. I have to go again Tuesday. On fun, husband anything? Nope. Down the line and your families know if we're being completely honest. I think my dad had undiagnosed type one and not contributed to his death 56 Which is why I had all my older three children tested and they all came back negative. So the one twin went into DKA. I never suspected type one because I was told he didn't have any antibodies. Everything was clear. So it came on here last a long time. Yeah, to like, wrap my head around that.

Scott Benner 3:59
And this isn't why we're here. But your father was sick and died pretty quickly.

"Laura" 4:04
I know he was from what we knew healthy. Great. I hadn't been out of you know, I hadn't lived at home in many years, but he just fell over at Easter dinner actually. In 2012 he was 56 he didn't get back up three days later. Nope. I'm so sorry. I don't know how we weren't gonna say no. Okay, I apologize. No, we've made that joke a million times worse. Yeah.

Scott Benner 4:35
Don't touch him. He'll be up in like 72 hours. Oh my gosh. So your dad had a real fast onset of what you think was type one diabetes DKA died? Yep. He's he

"Laura" 4:45
lived in a small farm town and they did CPR for like an hour and couldn't revive them. And I was like, Okay, so once I got the autopsy and I started putting it all together and thinking back of like, the symptoms that I noticed now Now that I know what they are, I was like, okay, yep. They did an autopsy because they thought it was Pontius Pilate. Yeah. They thought he had a heart attack.

Scott Benner 5:08
I say, Okay, you're not gonna keep going with this joke about the religious. So anyway, don't want to cry. Oh, I'm sorry, how long ago was this?

"Laura" 5:17
2012 So it's been an 11 and a half years. It still hurts. Some days, just because, uh, you know, I, I feel like not that I could have prevented it. But if I had been able to educate him to be like, listen, dad, like, Oh, I understand, you know, but also, he was my biggest champion and trying to figure out what's going on with me. And so I have a lot of guilt of, I didn't help him, but he helped me. You

Scott Benner 5:46
know? No, yeah, I helped my mom a lot with her cancer. And I think I think I made decisions that directly elongated her life. And I still feel bad about whatever it is, I didn't think to do. Yeah. Which is, you know, not really fair. But I understand how you feel. And I'll stop joking about I apologize. Mike, I need to laugh. Yeah, well, I think in a minute, you're gonna get to let your aggression out in other ways. So. So you're on the show today, anonymously. Because obviously, you have some backroom knowledge about human resources, insurance. And now about type one diabetes? Yes. So let's start with your career as an HR person. What is it? You saw that now in hindsight, you think, Oh, that wasn't? Right, we shouldn't have done that.

"Laura" 6:35
Um, it's always about the cost, right? Like, it's always, what can I do to save the most money so I can make the most money. And 110% of the time, it's, we're not paying for technology. In my previous experience, obviously, you know, 20 years ago, technology wasn't then what it is today. But I had no understanding of type one, what type one was, or why the technology was important. And I look back and I'm like, Oh, my God, even today, like I'm like, Oh, my God, why are insurance companies forcing people to live barbarically? Like, we have technology use it. But it's always about, I didn't fight hard enough, you know, to help this person. Why can't we add this to the formulary? Why? You know, just, it's always why like, Yeah,

Scott Benner 7:27
let's, let's break that down for people so that they can understand because I think that the phrase that your company feeds, you is Oh, the insurance doesn't cover that. But they're the ones who chose what the insurance covers. Right? Yeah. So when the insurance cut when your employer is saying, insurance doesn't cover that, what they mean to say is, for reasons of cost cutting, we decided not to pay for you to be covered by that. Right? Yes. Okay, especially

"Laura" 7:53
on a self funded plan, when they're fully insured, then the insurance company does have a little more control over that. But I am from the Midwest, it's a hotbed of self funding. I have never worked for a company that wasn't self funded. And they 100% control what's covered and what's not. And what that cost is,

Scott Benner 8:15
can we define those two things? So what is tell people that self funded means? So

"Laura" 8:20
self funded means the company itself is paying medical bills, fully insured means that the insurance company is paying the medical bill?

Scott Benner 8:29
Why would a company choose one over the other cost? It's

"Laura" 8:33
a gamble, obviously. But if you're self funded, and you have a relatively healthy population, then you're going to charge you know, $1,000 a month and an insurance premium, but you're only going to spend $400 a month. So you have, for example, so you have the ability to make a whole lot of money, right? And just sock that money away. When you're fully insured, you're paying $1,000 a month and insurance, but someone else controls okay, what portion of the bill gets paid.

Scott Benner 9:07
So fully insured is the company is paying a premium. And then that premium is set up based on the tier of insurance that they've purchased. And then if you get sick, the insurance company is the one taking the risk there. They're collecting money every you know, however, how, however frequently from your employer, and they're risking if you guys don't get sick, then we get to keep this. But that costs more because it shifts the it shifts the risk onto the insurance company so they charge more for it. Right self funded is yes, a company is a silly like you might have a card out and it might just say Aetna on it like great. And you think oh at this my insurance company. But really Aetna is just handling the billing and everything. And they literally send a bill to the company probably quarterly and say look this quarter are this is what it costs to give healthcare to your employees? write us a check for? Great.

"Laura" 10:05
Yep. Yeah, you're simply borrowing that network. So network United Healthcare network does not work, etc.

Scott Benner 10:12
So when you're in human resources, do you ever see someone come in, say they interview four people for a job? And they get it down to two people and they're equally qualified, and one of them's 50 pounds overweight? They go through this, then one, because maybe that'll be better for us.

"Laura" 10:29
The reality is, yeah, there is a little bit of that that happens. I

Scott Benner 10:34
mean, I'm just thinking of it. From my own perspective, I own the company, I'd be like, let's get the one who wasn't winded walking up the stairs? Like, I just, I think I would do that. So yeah,

"Laura" 10:42
I have one employee that I worked with, who had a blood disorder and needed lots of blood transfusions, lots of different things. And I was like, This guy is amazing. And so I took him with me to my next company. And they were like, what, why? Why do you know how much money we're losing on him? And I'm like, because he's making a lot of money to like, you can't just look at it from one perspective, but also, we're not discriminating. So don't talk to me about that.

Scott Benner 11:12
But if, if we can all do it with a wink and a nod, then why not? And so when, when people say the conversation I usually see online is like, well, when you go to a job interview, you don't have to disclose your health. And some people are like, Well, I have type one diabetes, I want people to know, and I'm not hiding it. I'm like out about it. But the truth is, is that if you got into that situation, they might go, oh, that lady looks like she's wearing an expensive gadget on her arm. Like, let's not go with her. Yep. Okay. So

"Laura" 11:43
my children will always be covered up, I don't care if it's 100 degrees, and you're interviewing for a job outside, you're going to wear long sleeves, and I just or you're gonna not wear your device ID or whatever. Just because I know that the discrimination from an HR side is legit

Scott Benner 12:00
gonna happen. And you can't prove it, right? No, how would you because nobody says it out loud. Nobody writes it down. So that's that?

"Laura" 12:09
No, that's why you have closed door meetings and you get yelled at.

Scott Benner 12:13
And you're all covered by NDAs. When you go in that meeting, you can't you go back out. And so therefore you kind of have to do this, which is be anonymous about it. Yep. Absolutely. Yeah. Well, I'm glad we're doing this. Actually, I have to be honest, I asked for health care professionals. And you reached out and said, Hey, I was in HR and I work in insurance now. And I was like, Oh, why didn't I ask for that? That's great. I was like, Thank thank God, Laura is thinking for me, you're producing the show. Now, some other examples. So your company might set up, you alluded to this earlier, but like to be clear. They they'll look at tiers and say, Okay, well in this tier, if you had type one diabetes, you'd get a CGM. But in this tier, you don't. And we pay less for this tier. So we're going to take this one, right,

"Laura" 12:58
or they're just going to exclude it completely. And so you're not, we don't cover CGM at all.

Scott Benner 13:03
So when you're making the contract, you just go through and you go, we like this tear, but like, scratch out these things.

"Laura" 13:10
So the company kind of tailors, the insurance coverage, ala carte, but honestly, it's about money, not about choice. Oh, absolutely. So like compound prescriptions. For example, one company that I managed benefits for just wiped those out completely, like, I don't care what it is, it's not being covered just because compound drugs are expensive. Up until last year, insulin prices weren't regulated, they would be like, Oh, we're gonna charge $200 a month for insulin, or we're gonna do you know, XY and Z things. Or we're going to, I don't know what the the post Obamacare term is, but before it was, we're gonna laser this out like this person has, you know, this is lasered out, so to speak. Now, with ACA laws, it's the verbiage is a little different, but the practices are still happening.

Scott Benner 14:00
Interesting. Yeah. So the world is the way I expect it. That's what you're telling me?

"Laura" 14:08
Unfortunately,

Scott Benner 14:11
I thought it was by the way, I'm actually generally speaking, I'm usually surprised when people act Pollyanna about things. And they go, Oh, that couldn't happen. There's laws against that. And I'm like, What? What are you talking about? Of course, that's happening. You know, like, it's not the way I see it is, generally speaking, you either work for somebody who has so much money that it doesn't matter, which some people do, like, you know, like you work for such a large corporation, that they can be fully funded. And it's still not be super expensive because the insurance companies still making a boatload off of them because they've got 20 3040 50,000 employees so they can get the price down because they've got overhead the insurance they've got they've got enough people and the insurance companies still making The money they want to make on the policy. But smaller companies are going to go self pay, because they're going to bet on their population not getting sick. diabetes comes with a lot of things to remember. So it's nice when someone takes something off your plate. US med has done that for us. When it's time for art and supplies to be refreshed, we get an email rolls up in your inbox says hi Arden. This is your friendly reorder email from us med. You open up the email, it's a big button that says click here to reorder. And you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives, we click on a link and the next thing you know your products are at the front door. That simple. Us med.com/juice box or call 888-721-1514 I never have to wonder if Arden has enough supplies. I click on one link. I open up a box. I put the stuff in the drawer. And we're done. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three, and the ducks comm G seven, they accept Medicare nationwide, over 800 private insurers. And all you have to do to get started is called 888-721-1514. Or go to my link us med.com/juicebox. Using that number or my link helps to support the production of the Juicebox Podcast.

"Laura" 16:36
Yep. So statistic in full transparency, I worked for five different companies, all of them self funded. And all of them had around 500 employees. The biggest difference that I noticed was the CEO. If the CEO is not, obviously he's always worried about the bottom line. Like that's his job. But also if he has a little bit of integrity, he's going to you're going to have these conversations like there were times it happened all the time, he would walk in my office shut the door, and we would talk about something, you know, at 7am before anyone else got there. In another instance, it was I don't care how you do it. But you do this, and I want them out. I don't I'm not paying for this. Like, we just got a $250,000 bill from UMR. Why? Like no, I'm not paying, figure it out and get rid of the problem. A person

Scott Benner 17:29
has looked you in the face and said, Get rid of that person. They're killing us on health care costs.

"Laura" 17:35
Oh, absolutely. happened more than once. Gotcha.

Scott Benner 17:39
Oh, all right. Well, this is uplifting. That's what I expected. By the way. You know, like when you said you'd come on? I thought this isn't to tell me how great everything is. That's Do you think people right now mostly I miss I'm imagining to two distinct different reactions for listeners, either someone's like I know it mother, or more. They're thinking, Oh, my God, I don't understand. But I'm on the I knew it side for sure. Did you know before you got into it?

"Laura" 18:09
No. I mean, I was 19. I was still in college. Like I had no idea that it was this discriminatory. I had no idea that I also had no idea that there were so many health issues out there. Like I was a young, healthy, 19 year old, I had no idea that you know, so and so John over there has whatever going on. And even though he's like an employee, he's costing the company a lot of money from health insurance wise. So then you're like scratching your head, you're like, what this is happening. And you want me to fire him kind of illegally, like, so those are the unemployment claims, you just don't fight. If I'm being honest.

Scott Benner 18:48
So you owe so it's a calculated maneuver, then we're gonna ask this person, we don't have a real reason. But we got to get rid of him before another $250,000 bill comes up, they'll sue us in unemployment, for unemployment reasons, we'll pay but it won't be nearly as much as we'll lose in the health care cost, right? Yep. Absolutely. Does the company get dinged for that somehow? Is there like a thing that keeps track of it or anything like that? Yeah.

"Laura" 19:15
So there is an unemployment amount that you have to pay every month. And obviously, the more claims you have, the more you have to pay in not just because you're paying that unemployment, but also because you're being quote unquote, penalized by the government for having that many claims is that thing people can check on when they're looking for work?

Scott Benner 19:35
That can I see. I mean, the companies who seem like maybe they're getting rid of people. Yeah,

"Laura" 19:40
I'm not sure about that. But there is a way to check and see if a company's getting ready to do a mass layoff like major companies are getting ready to do a layoff. I'm looking up as we speak the exact parameters. But I have one of my my best friends works for a major company and they're doing Doing layoffs and I was like, Hey, why don't you check and make sure like, she was like, I don't know if it's my department. And I'm like, well, they don't specify departments or names, but they do have to give the government 30 days notice why they're doing it. They can be really discreet about that. Okay.

Scott Benner 20:18
I know from when, when my wife's companies say they're going to do a reorganization, that's usually means everybody. And it's funny, I always think of it is every few years. They hire, they hire they hire, and eventually the bad employees shake out, you figure out which ones aren't as valuable as you hoped they would be or or didn't end up being necessary. And they move them along which business wise makes sense to me. It never occurred to me that we'd sprinkle in a couple of people with a heart condition or something like that. And to that list, too.

"Laura" 20:50
Yeah. And they're always going to say it's for budget reasons. And of course, it's for budget reasons. But the reality is, it's also because you have a health condition, and you're costing too much money. That's the budget issue.

Scott Benner 21:03
The budget is you coughed too much, I gotcha. Right? Would it be out of line to say, so I know a person who lost their job. This person was, by all accounts, fantastic, their job, a great employee, they were a little higher on the pay scale than anyone else. And then one day, out of nowhere, one of these little like, rules in the handbook on like, the last page, like literally, you can't chew gum while you're at work. That kind of thing. Someone walked up to this person said, is that gum in your mouth? And they went, Yeah, I'm sorry, I forgot. And went to throw it away. And they said, No, nevermind, come to the office. And they fired him.

"Laura" 21:46
Those are the stupid reasons that HR has to come up with to fire a good employee. Gotcha. Or whatever other reason, I can't wait to tell that person that. Yeah, but definitely, when you're looking at jobs, like you want to check the war notices for your state, W AR n that tells that gives a decent indication of layoff,

Scott Benner 22:07
if they're coming or how many you've seen in the past? Both,

"Laura" 22:10
it'll tell you, it's me, I hold on, I look up what it stands for Worker Adjustment and retaining Notification Act.

Scott Benner 22:20
So if you see a company that is consistently laying people off, they might be one of those companies who bring you in make a big, like, oh, it's gonna be great here, you're gonna love it. And then when they're done with you, or the work dies down, or whatever else, they just sweep everybody out with the trash on Friday afternoon when nobody's looking.

"Laura" 22:36
Great. Gotcha. Huh. Not always. I mean, sometimes they're for legitimate reasons, you know? Yeah. Yeah. But I mean, many times, it's just because

Scott Benner 22:47
so if I told you that that story I just told you about that person happened right after a new company took over the business that would even be less shocking to you, right? Honestly, not shocking at all. Right? They come in, they evaluate where do we it's always money. Where do we cut money?

"Laura" 23:04
Yeah, always. You're never a person. It's always about a number.

Scott Benner 23:08
You've never been in a room where they were like, Hey, how can we make everybody happier today?

"Laura" 23:13
It's happened a couple of times. And I convinced the CEO to serve everyone breakfast, just you know, to be like, Hey, I'm normal. And not a total asshole. But normally, yeah, I mean, it's all about money. Like it's always, where do we cut? How do we put the most overhead? And so I've been through a couple of sales, right? And you always make a spreadsheet of salaries versus expenses. And whoever is in the top obviously goes.

Scott Benner 23:46
That's why they say don't get too high. Like, don't make too much. I used to hear people say that, like, I don't want to make I don't want to I don't want another promotion, or they're going to take my head off in four years if I do, right. Yeah. Gotcha. Can I ask, since your kids diagnosis is did you have any, like quiet moments where you look back and thought, Oh, I wonder how many people's jobs I helped get rid of that had this stuff going on?

"Laura" 24:13
Absolutely. Because there are a few I know of. So I wonder how many I didn't know love. And I it kills me.

Scott Benner 24:21
But in the moment. I mean, imagine especially when you're younger in the moment, you're like doing your job which by the way, I also I'm not coming down on you like some this is how business works. I don't I mean, some people might have been surprised by it. I wasn't. And so people are going to do these jobs. Not everybody's job is pleasant, that I'm not coming down on you at all. I'm wondering about like, personally, like you have this moment where you think oh god, I was in a meeting and i i I came up with a reason to get rid of that person. That contour next gen blood glucose meter is the meter that we use here. Arden has one with her at all times. I have one downstairs in the kitchen. Just In case I want to check my blood sugar, and Arden has been at school, they're everywhere that she is contour next one.com/juicebox test strips. And the meters themselves may be less expensive for you in cash out of your pocket than you're paying currently through your insurance for another meter, you can find out about that and much more at my link contour next one.com/juice box contour makes a number of fantastic and accurate meters. And their second chance test strips are absolutely my favorite part. What does that mean? If you go to get some blood, and maybe you touch it, and I don't know, stumble with your hand and like slip off and go back, it doesn't impact the quality or accuracy of the test. So you can hit the blood not good enough, come back, get the rest without impacting the accuracy of the test. That's right, you can touch the blood, come back and get the rest. And you're gonna get an absolutely accurate test. I think that's important because we all stumble and fumble at times, that's not a good reason to have to waste a test trip. And with a contour next gen. You won't have to contour next.com forward slash juicebox you're gonna get a great reading without having to be perfect. Yep, yeah. Is that hard happened?

"Laura" 26:20
It's very hard. Especially when I think about, like, you know, because there are times like, I'll find out after the fact like, oh, so and so had this health condition or so and so was pregnant and you didn't know yet or whatever. And you're like, I mean, I can't tell you Scott, how many times I've put my hands on my head. And I've just been like, Oh my fucking god, what did I just do? Now,

Scott Benner 26:43
to give you the flip side of this, how many employees have you dealt with who are habitually taking advantage of like short or long term? Like coverage? Like somebody's like, oh, I, my doctor says I need to take a month off. I have a cough. Like there are people who like do that, right? Like they work a little, quote, get sick, take off three months on like long term disability, then come back, want their job back work six more months, get like that this happens? No,

"Laura" 27:13
it absolutely happens. And that's why FMLA laws are what they are. That's why it's 100 or one year, and, you know, the all the hours like, because to stop that. And it sucks. You know, when you're in a position where now I'm on the flip side of it, and I'm like, I needed FMLA, like two years ago, but I didn't qualify for it until one year ago. You know, yeah. And then, but then you see that all the time of like people that are requesting STP or Ltd short term disability or long term disability and you're like,

Scott Benner 27:48
No, over and over. So they they limited to a year for to stop people from taking advantage of it. But the flip side of that is there are actually some people who need it for more than a year and they just get aged out of it. unscrew them. And that's part of doing business. This is what this is what the speed trap catches, it catches people who need it and people who don't need it as well. Yep, absolutely. That's upsetting. Is that hard to watch somebody because that's stealing, in my opinion, you know, Oh, yeah. So did they ever prosecute people? Do they ever go after them? Or is it just too difficult?

"Laura" 28:20
I don't know that. I've seen any one prosecuted for it. But I have definitely seen short term disability and long term disability claims denied because they were frivolous. Yeah, they just tell him Look, come

Scott Benner 28:35
back to work or you're done. That's it, right? Yeah. Gotcha. Am I missing anything so far? Like, is there something you should be telling me that I'm not going to ask about?

"Laura" 28:45
I just want to reiterate that, especially if you work for a self funded company, your HR has total control over the formulary and what's covered.

Scott Benner 28:55
Have you ever heard my story about artists dental work? No, I don't think so. When Arden was really little, obviously, we didn't know what we were doing. She was drinking a lot of juice at night, like, you know, saving her from lows over and over again. And a lot of her baby teeth got cavities. And it was too soon. She couldn't just take them out. Because she needed them and she wasn't going to get teeth for a little while. They had to be fixed. So we went to a dentist who looked at her and said Look, I am not comfortable putting her under has her blood sugar get low. We need to do it in a hospital. I am not comfortable doing the office. I want to do it in a hospital where I can have somebody monitor her blood sugar or have her on a sale, a drip of glucose if she needs it, that kind of stuff. And I was like okay, so then our insurance denied it. Okay, yeah. And they kept denying it and kept an eye even though it's now a medical procedure because it was happening in hospital wasn't dental anymore. They denied the data and it just went on forever. And it was like 15 grand, I think and we were young still and I don't want to say that $15,000 Not a lot of money to me. It is but on They're like penalty of death, I can probably pull it together for one of my kids if I needed to. But back then I could not have, right. And so I called my wife's company. I literally called Human Resources. My wife's like, they're not going to help. And I was like, I got nothing else to do. So I called the company, I spoke to somebody. And they said, let me see what I can do. And they got back to us a couple days later. And they said, Yeah, it's fine. Go ahead and book it, we'll pay for it. But it was a self funded company and a big company. So all I had to do was actually get to the person in charge. And they were like, what's 15 grand to help this kid will do that. And that was it. It was just over.

"Laura" 30:39
Yeah, and that's the thing I think a lot of people don't realize is, I can't tell you how many spouses I've talked to, I've spoken to over the years, let alone the employee themselves. And you know, it's true, the squeaky wheel is going to get the grease, however, don't call in and be a jerk about it, like, you know, have like a decent conversation because we're people too, we're just trying to do what we're supposed to do

Scott Benner 31:03
yelled at a lot.

"Laura" 31:06
But like, at the end of the day, you know, I'm, I, we've I've been able to make dozens of changes to plans mid year, like you have to give appropriate notice legally, obviously, but like, you know, each quarter, you can change your plan from a company's perspective. So I've been able to pull that off many times helps people.

Scott Benner 31:28
Yeah, I just called and I honestly, I didn't understand self pay and full pay back then. This is actually how I learned about it. But I just called and said, Is there anything you can do to help us like, I thought I was asking them to call the insurance company. And like, you don't mean like, I thought I was asking the company to call the Wizard of Oz and talk him into letting us into the city. Like Like, that's what I thought I was doing. And they were like, oh, no, that's on us. We'll just pay for it. I was like, Oh, okay. So we just got lucky when I told my wife. She's like, what I was like, See, I told you I work it out. But the truth is, I just got lucky. So good. I don't know what the hell I was talking about. Even at the time.

"Laura" 32:03
No, you asked, the only thing they could do was say no. Yeah.

Scott Benner 32:07
I mean, that's actually it's how I got a girl to party for me to marry me even I was like, I mean, you know, she's tall. She's pretty people don't see, they seem to be like afraid of her. It's like, I'll just try.

"Laura" 32:18
I mean, if I'm being honest, my husband, his CIO, my husband's a computer nerd.

Scott Benner 32:27
And, by the way, not what you say, but

"Laura" 32:32
um, his CIO, it has a wife, that's also a T one. He obviously has paved the way but they cover things. I mean, he has amazing insurance because his CIOs wife was like, No, you you're going to do? Yeah.

Scott Benner 32:48
Well, and so yeah, I understand what that means, too, is that once you get, you know, people here, oh, this place covers this, that cover CGM covers all that. Like every person they hire in with that. That's money going out the door. Again, that's them paying for your pods or your pumps or your insulin or whatever. That's really and so that's a real kindness when you find people doing that.

"Laura" 33:10
Absolutely. It's because you have executives with integrity.

Scott Benner 33:14
That's it. You don't see another reason for it at all.

"Laura" 33:17
I mean, I'm sure. You know, listen, I'm sure that he brings great value to his company. And I'm sure as does everyone, right? Or he wouldn't have a job. But at the end of the day, it's because you have executives with integrity, right? Because

Scott Benner 33:34
they could hire somebody as good as you who doesn't need an insulin pump. Right, right. Hmm. I have other questions that might not be connected to this, can I just ask real quickly? Go for it.

"Laura" 33:45
I'm a wealth of information.

Scott Benner 33:47
I think you might be back actually one day, but we like when the company's like, Hey, you can get life insurance through us, for example. And it's like up to one to nine times your pay or whatever. There's always value in doing at least what they're what the company is paying for. Is that right? Absolutely. Yeah. Always, always take that. What about health care spending accounts? Is that a good thing to do? Depends

"Laura" 34:10
on the plan. So previous to diabetes, we always had an HSA. But since diagnosis, we have gone to back to a traditional PPO plan, with a low deductible because HSAs are hit and miss because they only find as you get paid and you fund them. So if you have a $3,000 bill in January, you may not hit $3,000 in your HSA until June, right? So they're tricky, and it's always something to look at.

Scott Benner 34:46
That is what happens to us. We so we we take the mat I actually we put the maximum we're allowed into our HSA and because you're really it's just the tax shelter for the money, right? Right. Yeah. So but like you said, In January, when like, it's pomp time or this time, you're like, ooh, the first time like your your CGM is cost $2,000. And you're like the other 20 bucks in June, what the hell, you know, like that, that kind of stuff is shocking. And if you don't have cash aside for it, it's obviously problematic. Yeah. Or it's like that initial hospital though, when your child first goes in and is diagnosing, you have to pay it literally on the spot. And you're like, Okay, I'll

"Laura" 35:27
give you whatever you need. Just keep my child alive, right? And you're like, Holy shit, that was a lot of money. Like, how did I just come up with five grand to give them like literally on the spot, and then you're re evaluating, okay, we maybe need to change our insurance, because I don't know that I can do that all the time. That's not necessarily practical. Yeah, it is a thing too. I

Scott Benner 35:50
never forget when I moved into my house, my neighbor was older than me by almost 20 years. And he was already sending his kids to college. And I was like, how do you pay for all that? And he goes out, you'll figure it out. I was like, that's your advice. And he goes, that's how it works manually to figure it out, or you won't, I was like, Okay, thanks

"Laura" 36:09
for being college right now. And I'm like, Oh, my God,

Scott Benner 36:12
how are we doing this? Nicholas, I mean, they call me I am working art in art in just left school, like five hours ago, striving home, like the semesters or the quarters over. And she's like, there's, I need money in my account for the drive home. And I was like, okay. So I'll transfer some money in your account.

"Laura" 36:31
I mean, I literally had to send my daughter $900, a couple days ago for a new computer. And I'm like, okay, cool. I don't have anything else going on. Sure.

Scott Benner 36:41
I'll just keep wearing these sneakers, another six months, it'll be fine. Forget the hole in the side, I'm wrapping it with duck. It really does. It is the way it goes. So it was like you're living. You're living like you're in college. And they're there. Okay, that was going on. Anyway. Okay, so that's the HR side and what you might expect from your company, but now you work for an insurance company. So how are we getting stuck that way? Because

"Laura" 37:09
they're gonna deny everything you said to them, at least once. And then thankfully, we have a really good endocrinologist who literally, you know, when I'm like, listen, they're not gonna, like, they're not going to approve it, you know, blah, blah, blah, like I work, not for the insurance company that we have, but like, I work for an insurance company, and they're gonna deny it, like, I know how this works. And she's like, No, no, let me take care of it. We know how to write these things to make sure that it gets approved. And I'm like, Okay, I don't know this, the science or the specific behind it. But I have come to realize how insanely important it is, to find an endocrinologist who will write the prior authorization requests the way that they need to be written to get approved. It's fascinating.

Scott Benner 37:58
I, I needed. So I don't know how much of the podcasts you listen to, or you don't listen to. But I've been using weego V for weight loss for like nine months now. And I really need I've lost 40 pounds. It's made a significant change. You look amazing. Oh, thank you very nice. Anyway, when I went to the doctor, the doctors like, look, obviously you need this, your BMI supports it. But I said, Do you think it'll get covered? She goes, I know what to do. I was like, okay, and boom, right through like it was nothing.

"Laura" 38:25
Yeah, like my son, he's now 19. So I can't do it for him anymore. I just send them insulin. So he doesn't die, because he doesn't get it himself. But the difference is, and the endocrinologist are like, night and day, like there's not enough words to describe it. And I'm like this, like, how do you not even have enough insulin to get through a month? Like, why is it not being approved? And he's like, I don't know. That's just what they'll give me. And I'm like, okay, clearly, I need to have a conversation with them and be like, you, you know, here's how you write this. This is where my 10 year old, I have a ton of extra insulin. And thank God because that's how I'm keeping my 19 year old alive. Like literally, I'm shipping it to him every month.

Scott Benner 39:10
Your younger kid is that a pediatric Endo, they know how to say, Yeah, let's just we'll say the need is this and that way, you'll get an extra vial and you'll be okay. And like that kind of stuff. And the adult endo is just like, they don't give a crap and they don't try very hard and your son is 19. So he's not pushing back. And that leaves him without insulin. Right? Yep. He gets about half of what he needs uninsured person. Yeah, yeah. Gotcha. And that's just because the doctor doesn't know how to deal with the insurance company.

"Laura" 39:41
Yes. And also I have a child but I got like, Yeah, whatever.

Scott Benner 39:46
He's a little dopey or whatever we got going. I don't want to say to your kid don't say, so. He might hear this one day, like I'm not dopey

"Laura" 39:55
all the time. I'm like, you're pretty mouthy for a kid who relies on his mother at all. If

Scott Benner 40:01
you're like, I'll shut the insolence pick it off, and then we'll see who's listening. But what this points out bigger picture, my opinion is that there are rules set up on the insurance side that are meant to block you from getting your services. And then doctors and other people on the outside have to figure out how to navigate the system, which is a polite way of saying write down what doesn't get caught by the computer or the checker. So it somehow slides through the machine and ends up at the end with a check mark on it. You get your thing, right. Yep, that's exactly how it works. Everyone's just trying to screw you. Yep. And if you go with it, they're not going to say this is a contention I've had the entire time. Like back when I was younger, Arden was diagnosed. Again, I told you, I didn't know what I was doing as much. But that's the first thing I said to Kelly was like, they deny everything the first time. Yep, that just happens. And it doesn't matter if it's covered even they just go No. And then because if you call if you're not willing to call back, they just saved the money. Right? It's that simple. And then if it's covered, you call back they go Oh, yeah, you know, we just needed this from the doctor. And then they tell you what to get. And then it's covered. So you push back a little bit, you get your covered things paid for. But then the what happens when things. So there's, I don't know if you're, how much you're in the private Facebook group. But there's a lot to do you know, Sam, who helps people, Sam writes letters that get people their stuff. She's magical at it. But that's really what it is, is she's able willing her brain works the right way to sit down, look at the look at the rules. And she knows how to write something that circumvents the rules that the insurance company put in place to stop them from having to pay you for the things you deserve. Yes,

"Laura" 41:55
yes. Okay. Like my I work for a small boutique insurance company, right? And they decided, when they announced the 2024 plans, it specified that CGM weren't going to be covered anymore, like in any capacity. And I, internally and to my husband through the biggest fit, I was like, Oh, my God, no, we are not doing this. And then a couple other people that like, No, my passion for this spoke out and and it quickly changed to oh, well, Medicare covered will cover Medicare covered CGM 's. And I'm like, Yeah, you will. And so why did

Scott Benner 42:36
why do you think that happened? Did it happen because they were seeing more people with diabetes? Or do you think they saw the news about people wanting to use CGM for overall health and stuff and they thought, let's get ahead of this and make sure we don't cover these things?

"Laura" 42:47
I to be honest with you, I think it was purely cost. purely a budget like we weren't, you know, it was, hey, we're gonna save X number of dollars by not allowing it CGM. So we're gonna just exclude it from coverage next year.

Scott Benner 42:59
Can you do me a favor? Can you put $1 amount that was saved? And tell me the like the operating budget for the year for the company?

"Laura" 43:07
I don't have that info.

Scott Benner 43:09
Can you guess about it? Like, how much are they saving? How much do you think they saved?

"Laura" 43:13
Oh, goodness. Well, we have I mean, I talked to probably five people a day that are on a libre, a few that are on a duck's calm that I talked to. So that's not just me. And there's 100 of us, right, that take those phone calls. So I mean, it's definitely in the millions. They're saving

Scott Benner 43:34
millions of dollars by saying so. So basically, they look at that spreadsheet you talked about, they see a line, the numbers read, they go over to the left, it says CGM and they go okay. They don't even know what the hell that is. They don't even care, right?

"Laura" 43:46
No, no, I, I would venture to guess 85 to 90% of them have no idea what a CGM is.

Scott Benner 43:55
It's just a red. It's a red line. And they need to get rid of it. Yep. It was something they wanted to laser out. Is there no, like, what if it was like cancer medication? Is there any thing where like, societal pressure stops them? Well, I

"Laura" 44:10
think that was why they ended up a week later, changing their tune was because of the societal pressure. Because there was not only employees, but there was a lot of members that they insure that we're like, Hell, no, you're not doing that.

Scott Benner 44:24
Oh, so even the companies that are buying the insurance from them are like, Hey, I have diabetes, like hold up, like that kind of thing. Do you think if they would have known that before they struck it, they wouldn't have or do you think they would just strike it just see what would happen next?

"Laura" 44:39
Oh, the way that this company operates, they were gonna do it anyway and then just take the gamble. They're always going to take the gamble,

Scott Benner 44:46
right? And then if somebody benches, then we'll backpedals. We have to.

"Laura" 44:49
Yep. Always.

Scott Benner 44:52
You know, again, I have to say purely from a business perspective. It makes sense to me. I'm not shocked I'm not even appalled, actually. I'm just like, Okay, I get it. Like I see. Now, if you told me that this is a, you told me this is a $25 billion a year company. And they, they did this and they were gonna save 3 million bucks. Then I go, come on, like, you know what I mean? Like, what are we doing here? Do you think that that's charged by operating budget? Like we want to have more in the bank? Or is it can it literally be the more of these things we cut away? The more money the CEO and the board and that those types of people end up taking home at the end of the year? No,

"Laura" 45:34
it wasn't the people. They're working on building new hospitals and they want they want the money. I know that they took a decent loss. I think every company took a decent loss during COVID. And they're trying to make up for that shortfall. By doing anything they can and have art, they're wanting to expand. They're trying to expand. It's just not able to happen as fast as originally planned. Yeah,

Scott Benner 45:58
they wanted it as capital, they needed it for operating. Yeah. You know, anybody who's got kids in college through COVID. And after COVID, will see that the incoming freshman classes after COVID don't fit in the buildings, right. And the colleges don't care if they're like, We need more like there are a pile of children in colleges they probably couldn't otherwise get into because they had money. And those colleges needed to sell those spots to get the money back. They lost during COVID. Absolutely, yeah. And then it hurts everything going forward. Everything except the bottom line, the bottom line is service. And you get poor poor experience in college you get you know less, more students to teachers, you get crappier teachers, like you get all kinds of like bad all kinds of bad comes from it. But in the end, the school will have more money in the bank when it's all over.

"Laura" 46:48
And your personal reward is hundreds of 1000s of dollars of student debt.

Scott Benner 46:51
That yes, and you'll go get a job that won't cover your insurance rates for you. And then you can just work your life away trying to pay it off. And hopefully you won't get sick but if you do, don't worry, we'll find a reason to fire you. Right. Perfect. This has been really uplifting thank

"Laura" 47:09
god, oh my god. But I have discovered like so a whole nother subject but like an LPN at my son's school two years ago when he was diagnosed like literally almost killed him not once but twice. And so I you know, we wrote the OCR, we did the whole thing. And I realized like that this is my job in life is like to be a whistleblower to like, these practices. I'm gonna hold schools accountable. You companies, you do dumb shit. I'm coming after you. I'm gonna hold you accountable

Scott Benner 47:43
for you. Well, we gotta get you a job doing that. Like, I know, we need like a small nonprofit to hire you. Yes, absolutely. People.

"Laura" 47:54
I'm literally a wealth of knowledge. I have so much legal background, like not from the employment law side anymore from like, you know, EDA, 504. I have, I'm telling you, I'm a wealth of knowledge. I

Scott Benner 48:07
know, an HR professional, pretty high up in a midsize company. And you can tell it everything about their job pulls on their heart, like, constantly, like they're always downtrodden when they're talking about work. And it's a little bit like, I can't believe I'm the one that has to do this stuff. Yeah, that kind of feeling.

"Laura" 48:26
Well, I officially retired from the HR side, when I had an employee fatality. I was like, Nope, I will never be the person to do that again. So by Can

Scott Benner 48:36
you give me color on that? They

"Laura" 48:38
had somebody die. Oh, yeah. So they were 18 came to work. Hi. And I was driving a forklift and trying to do fun, fancy tricks on it. And

Scott Benner 48:57
yeah, but it was like

"Laura" 48:58
10 o'clock, the day before Thanksgiving. And I was like, I will never, ever and of course, me being you know, the only female on the executive team got a guy nominated to make that phone call. You had to call his parents. So I had to be the one to call up parents. I had to be the one to do the press release to you know, talk to the media because it was everywhere, right? And I was like, never again, not doing it. So I, you know, had to bring in the grief counselors and do the whole thing. And I mean, you know, of course, I got a very nice bonus out of it. And literally, three months later, I was like, nope, not doing this guy's like, bye. I'm out. And I went that's why the company

Scott Benner 49:42
didn't do anything wrong. Like the kids showed up high. Nobody knew it and this is what happened. Right?

"Laura" 49:47
Yeah, the company didn't do anything wrong. And we I you know, but just with OSHA, we reinforce safety roles, all of it, but like I still personally don't want to ever do that again. This

Scott Benner 49:59
the poster on The wall now say no heroin while you're working, or I mean, what is the like? How do you reinforce that safety role? Well, ultimately,

"Laura" 50:07
the facility ended up getting shut down, not by OSHA, but just because there were a slew of other problems. And I just was like, Okay, I am putting together a lot of us, were you but like, I'm out. So I gave, I gave him like, three months. And then I was like, okay, it

Scott Benner 50:26
just made you. It made your heart heavy, and you want to move on and do something else.

"Laura" 50:29
Yeah, so I came to the benefits I thinking like, or to the insurance companies, I thinking like, that would be easier for me personally, to deal with, like mentally. And now I'm like, maybe not, Oh, hell no.

Scott Benner 50:42
I, when I was very young, like in my early 20s, I used to collect credit card debts. And I had to stop doing it. I was I was really good at it. And it just made me feel bad all the time. Like, there's no doubt these people spent this money they owed the money, like all that. And I'm not even talking about the the interest rates, like I know, they're, you know, I know that I know the game, might they get you to buy a couple things. I mean, right now people's credit cards are like it like 24%. Like, I don't even like if you're buying something on a credit card, and you don't have to please stop. But But anyway, this would happen. People get under, then, you know, they're just trying to get your monthlies out of you. Like really, I don't know that people understand that credit card companies, insurance companies, some businesses, they're all really just, they're in business to make money. So they can their investment companies, basically, the most insurance companies are investment companies, right? Yeah. So they need the money so they can invest it and make more money. So they get into something where they make a bunch of money, your health is probably 20th on their list of what's important to them. And, you know, they're just they're collecting fees, and then using the fees to, you know, buy stocks, do trading, like that kind of stuff and try to make money that way. Anyway, I couldn't do it anymore. I was just I was too good at it. And some of those people were lying, and they just didn't want to pay. But some of them were really in trouble. And I was good at cajoling them into paying. And then I just left one day and I told my wife, I'm like, I have to stop doing this. Like, it's hard. It's just it's heavy. I don't want to be the one that makes these people give somebody this money.

"Laura" 52:20
So yeah, I mean, I've experienced that with the company I work for Right? Like, the most heartbreaking stories like, is it me, it was me four years ago of, hey, my teenager just got diagnosed with type one. What do I do? And I'm like, Okay, this is what like, I give them like, line by line, like exactly what you need to write what you need to do. And at the end of the day, I know I'm costing my company money, but like, do I care? Now? Because I'm going to do what? Like, I know what that mom's feeling like, I know that the mental anguish, the emotional, the physical, like, I know exactly how she's feeling because that was me a few years ago,

Scott Benner 53:00
we will at some point your company, do an auditing of the people who have your job and say, Laura is costing us more money than other people. I think she's being too kind to them. No, they

"Laura" 53:12
actually have offered me a promotion. I declined it because I don't want to be in management anymore. Because

Scott Benner 53:17
of your knowledge, because you know what you're doing? Yeah, I see because you know, your way around even their rules. Yeah. So they'll put you into management to put a stop to other people understanding how to get around the rules. Yeah,

"Laura" 53:30
I'm 100%. And outside the box thinker always happen. Like you give me a roll off, figure out how to break it not like in a mean spirited way. But like in a you tell me that x y&z has to happen it fit inside this box, I'm gonna figure out how to get a outside. Like, that's how I've always been.

Scott Benner 53:48
This is all very disappointing. Even though I was even though I was ready for it. Like I knew, I mean, nothing about again, nothing about this surprise me, I'm still incredibly disappointed. But, you know, you know where, where you have to look for, like a bright light is you have to you gotta have to hope somebody like Laura is just like, I'm not going to do this anymore. Or a person like me is like, you know what, I'm too good at collecting data from people and I feel bad about I'm not getting my son coming out of college. I had a job opportunity. And he I don't want to say what it was. But he he said to me, I don't want to police people. And it wasn't he wasn't going to be a police officer was a job where you would have overseen people he's like, I hope people are using or understanding the term policing correctly, but he's like, he's like, I don't want to be in charge of telling people what to do. I'm not I'm not doing that. And it was really good paying. And he said, I am I'm not going to be a party to to overseeing people like that.

"Laura" 54:47
Yeah. And I totally I totally get that sentiment because that's kind of how I I was I felt, especially towards the end of my HR career. I was like, nothing more than a referee. You're

Scott Benner 55:01
in general, your job is. I mean, it's nice to you to come on and take this conversation from another perspective. But your job is like, how do I screw people to save money? That's your whole job. And it happens to be around health. But the truth is, is that in almost every walk of business, that's what's going on? Oh, absolutely. That's what's going on down to the littlest things like, I take ads on this podcast, right? The podcast does incredibly well for the people who advertise on it. And at the end of every year, someone gets in a room and half heartedly goes to me, we can afford it to go up. And I'm like, Yes, you can. You know, you can, I know, you can, you know, you can't afford to stop buying ads on this podcast, like the whole thing. But we still go through the motion, every time, the same thing happens. And it's not, they're not bad people, not a bad company. As a matter of fact, they're fantastic that the podcast exists there, somebody's going to get this information for free. Because of the advertisers. I love them. They're fantastic. But we still dance the dance, every time, we all know where the dance ends up. And yet we put on our shoes and play the music. And here we go. Let's see if I can squeeze 3% out of this, like, you know, so I can go back and tell somebody I squeezed 3% out of this. It's just, it's it's miserable. Miserable is a good word. I don't know another way to put it, I actually, I'm okay with it, like big and not just okay with it, I'm happy about it. Because that means the information gets to people, and it's free. And that's important. It's important for the podcast to be free for a couple of reasons. The top reason is not everybody would pay for it. So now, for the cost of like, whatever I would have to charge $6 a month or something for you to listen to the podcast, 99 cents a download or whatever, like to save a you know, $100 a year for you as a listener. Some people won't spend that. And now Now for the love of $100. For example, there's some kid walking around out there doesn't know how to Pre-Bolus and 30 years from now we'll be getting needles in his eyes or something like that, because they didn't have access to good information. So I'm not I won't restrict the information. Well,

"Laura" 57:11
listen, given what we just talked about. People can't afford it. You know what I

Scott Benner 57:15
say? Yeah, no kidding. Like, yeah, now I'm asking, like, anyway, at my fundamental core, I am not up for asking people to pay for better health. That's not something I'm okay with. Like I just, I'm just flatly not okay with it. And so it has to be advertiser driven. Because this is a I know, some people might be like, it's a podcast, you're just talking to the microphone, you'd deck but it's a it's a 70 hour a week job at minimum 24/7. I don't take a day off. I'm managing something at midnight, while you're all sleeping. I was up till like 11 Last night making edits and ads. And then I got in bed and somebody's like, hey, somebody reported a post in the group, you gotta go look at that. I was doing that at like two o'clock in the morning. I'm recording with you and getting taxed right now. Hey, somebody put a post up. We think it has to come down. And can you take a look at it? Like it's a nonstop thing? Right. So I don't think I should be wealthy over it. I'm not saying that. But I am like, it needs to be covered financially, because I have bills and children in the home and stuff like that. Absolutely. And

"Laura" 58:17
I have to tell you, thank you, to you. We went to pediatric endocrinologist Monday, and our 10 year old agency was 5.4. And we could not have even come close to doing that without your help. Oh, that's lovely. And all the knowledge you provide us.

Scott Benner 58:33
So nice to have you. I appreciate you saying that. And congratulations. And oh my

"Laura" 58:36
god, that's the funny story in my house is my younger ones always like I just don't want to be like him because he knows that the older ones fairly non compliant. And he's like, I don't want to end up like him. Why? Why is he being so stupid? Why does he do that slide. And he's like, Mommy, I'm not moving out until I'm 25. And I'm only going to move out when I have a responsible wife and like the other because he sees what the other one's going through and how his girlfriend is like, you're on insulin. Oh, well, maybe you should call your mom. Not like Hey, buddy, you're gonna be out of insulin in three days. Call your mom.

Scott Benner 59:12
Why don't we do something? Your your I like your young sons, like I need a lady to tell me what to do, or I'm gonna be in trouble. That's some clear thinking. I'm in trouble with that a lady telling me what to do. I'm being perfectly honest. So

"Laura" 59:26
I'm being very honest about that. He's always like, we were joking about boarding school. Cuz, you know, it was a joke. And he was like, Mommy, I can't go I don't have you to manage my diabetes. And I'm like, buddy, I'm trying to teach you because like, I know you are but like, I can't do it without you. Yeah,

Scott Benner 59:43
well, and the point is, is like your point is when people are living like that. Can you imagine that? Even if I were to say like, Hey, look, I have the answer for you, but it's gonna cost you $250 a year. And you know, and I people would go no, thank you. And so from me being focused on helping people Oh, I can't put a paywall between the information. Like it just won't work. Right?

"Laura" 1:00:06
I consciously couldn't do it. Like,

Scott Benner 1:00:08
I mean, I my conscience, but I mean, you heard me with the debt. Yeah, I'm not good. I couldn't do it. Like if I if I was reaching in my pocket to buy a sandwich, and I thought I was pulling $10 out that someone gave me to learn how to Pre-Bolus I would probably vomit. So yeah, I'm not the right person for that job. But it's interesting that you made it into this kind of work, but you're the person you are. So did you, like you said, you started out really young? I'm assuming in the beginning, you didn't know what you're getting into. And then once you're into it, you're like, Well, this is how I make my living. I'm good at it, whatever. Like, I can't just leave here. And and then that's kind of how that how can I ask this? If you have a group of employees that are all doing the same thing as you, do you think if we got them all together, most of them would say, I do the thing, and I feel bad about it.

"Laura" 1:00:59
I think you probably have 5050, I've, I've run across so many HR professionals in my career, and some of them are like, I hate my job, but I'm really good at it. And it been funny, so I do it. And then you have the other half that are like, Oh, I don't care.

Scott Benner 1:01:18
You know, whatever little dangus cons, they would have been like, five, 6000 years ago, they would have been like, Whatever, let's just Yeah, that's fine. Listen, I also don't, I don't That doesn't surprise me either. That people's you know, sensibilities are different. I was just wondering how many people are like downtrodden in these jobs? And, you know, so here's my I'm gonna let you go. Right, unless there's something we haven't said. But I have a last question for you. Of course,

"Laura" 1:01:43
is there a fix in this that serves the company and the employee? Or Is there really no winning? The fix, honestly, is honest conversations, finding out what your employee base needs. But people are too scared to talk about it from both sides, not just from the employee side, but management is also scared to talk about it. So I think that that's the biggest thing is going to be lots of honest conversations, aside from the fact like, the whole system just needs an overhaul like, why am I filling out a PA, diabetes didn't go away? Like, you know, I still have it. I've had it, you know, for three years now, like, Stop making me fill out the same paperwork, but they're gonna keep doing like, that's just stupid. Yeah, like, they're gonna keep doing it until someone says something like,

Scott Benner 1:02:31
at the beginning of the year, when like, your district, your distributor goes like, well, we have to get, you know, a letter from your doctor that says you have diabetes, and like, my daughter's had diabetes for 15 years that didn't go it didn't like, What are you talking about? How it's done? Like, oh, okay, and they don't know, either you have them on? And they go? Yeah, I don't know. It's what it is, we have an entire world, that if, if you every stop for five minutes, looked at each other, and we're honest, everyone would go, I don't know why it's like this. It shouldn't be like this. But yet it is. And it perpetuates itself, and keeps everybody going. And they're, you know, there's an argument that it's just that society gives people things to do, because people need things to do, or they'll become either lazy or aggressive. So you just you build these, like, bullshit tasks into people's lives to keep them focused.

"Laura" 1:03:19
Yeah. And I mean, I have to say, like, I pride myself on I am, obviously my best interest are with the company, right? But like, I am a very empathetic person. So I always and I did a lot of project work, consulting. Once I got, like, good at my job. And I would always sit down employees, and be like, Okay, listen, let's have an honest conversation. And some of them were extremely honest with you, because they were like, Oh, my God, no one's ever talked to me about this before. And I'm like, What can we do to make it better for you know, blah, blah, blah, other employees that were like, it's fine, let's just keep it the way it is. I'm gonna go back now. And I'm like, okay, so you're you get that. But you also have to take that information up the chain, and you're looking in the white of a CEOs eyes and being like, look, the people think you're a complete douchebag fix it. Like, you know, you're you're just money hungry. You're you're not a lot like this is how they're seeing you. And so it's having lots of honest conversations, but people are scared. I've never been scared. I don't get scared about people. Hence why. I've done OCR, and I've talked, I've done all the things I've done, but it takes a lot to do that. And I I like to bridge that gap, but it also takes a mental toll on the person doing it. And that goes unnoticed, right 100% of the time.

Scott Benner 1:04:45
And this this why all this what we're talking about. This is why small companies can't even afford to offer people health insurance. Yeah, yeah. Because if they go full pay, it's probably crazy expensive because the insurance company is not making enough of a VIG off of it because there's not enough P People, and if they go self pay and one person gets sick, they're out of business. Right? Gotcha. Yep. Okay. Well, everyone jumped out a window.

"Laura" 1:05:12
I told my husband every day, I'm like, I don't care how much you don't like your job, you're never leaving it like you have anything. This is

Scott Benner 1:05:18
what's happening. I have to say my wife's benefits are terrific. And they are it is, it is the thing we passed on to our kids. As far as I've said to them, Look, you want to work for a large cash rich organization? That's your best bet at getting decent health care? I mean, am I wrong about that? No,

"Laura" 1:05:39
I don't think you're wrong about it. I would say I don't know that being cash rich as a company is like, it's a priority. But I don't think it's the biggest priority, just because

Scott Benner 1:05:48
they might just choose to keep more of that money for themselves and not spread it around. Or

"Laura" 1:05:52
they could be, you know, executives have integrity and be like, Look, we need to do this to get work a good working population, because the reality is, from what I've experienced in my career and talking to others, your highest performing employees always have some sort of health situation going on. So they're going to be expensive, but they're also going to save you your you know,

Scott Benner 1:06:18
they're going to cost you but they're also going to make you a lot more money. hardworking people are killing themselves faster. Yep. Yeah. That's, that's a joke about my wife's job that we have between us. And like, they pay you a little more because they know they're killing you. And they're trying to keep you here doing it. And the only way they can figure out to do it is to incentivize you like that. Yeah.

"Laura" 1:06:38
So I think that, you know, the reality is, there are some companies that realize that, but like, realize, hey, we've got to take care of these employees if we want them. If not, we're gonna settle for mediocrity, and we're gonna get what we get. So you either pay for health insurance, or you don't. And that's a gamble, too. Yeah,

Scott Benner 1:06:57
about that. Isn't that interesting? It's all very, it's all incredibly interesting.

"Laura" 1:07:01
I can tell you by name, every single one of my high performing employees I ever worked with, and I can tell you also by name exactly. Every one of the medications they took for every single one of their diagnosis.

Scott Benner 1:07:13
Wow. Well, that's, again, not surprising, but interesting to hear you say it out loud. I really appreciate you coming on and doing this. And let me call you, Laura. Of course.

"Laura" 1:07:24
I'm happy to be here.

Scott Benner 1:07:25
I'm gonna ask a question. Now, you told a story earlier about an accident. You think that that story has too many details? And do you think people would be able to tell who you are from that?

"Laura" 1:07:36
Now? Well, that. I mean, at the end of the day, that company doesn't exist anymore. They were bought out. That was the final thing I did. Okay. All right. Well, we can pretty much notice and I was like Carol put the package together. And then I'm out. I'm doing this

Scott Benner 1:07:49
last thing and then I'll go and by the way, you did take the bonus, which I would have as well. I just it's interesting. Oh, of course, but it's a thing we don't even talk about, like you had to do a distasteful difficult thing. And the way they did it was their like your take some extra money, like Sorry about this. Like that was really it. Like, thanks for going in there and cleaning out that sewer. Here's an extra couple dollars. Yep. Everything's money. Yep. Okay. All right. I'm gonna go, I'm just gonna go sit, and I'm gonna weep in a corner, and then I'll put my keyboard. Oh, my God, do you think everyone's scared now listening? They're like, Oh, my God, I know, it's not enough to just get a job with insurance. I have to pretend I'm not sick, or they'll boot me out eventually.

"Laura" 1:08:33
I mean, well, that's why there are laws that say you don't disclose this. You don't have to. I mean, you know, of course, everyone has a personal choice to make. But there are laws for your protection for a reason. And I highly encourage everyone to do their research before they go interview.

Scott Benner 1:08:54
And if you get if you get fired for some tic tac, little bolts reason, tell them right away, you're getting an attorney, right?

"Laura" 1:09:01
Yeah, don't do anything else don't. Like, in my positions, I always had to sign an NDA when I was coming and going, or, you know, signing different documents. And I have learned, yeah, don't do that. Because then I gave up my right to, you know, sue for sexual harassment, or I gave up my right for whatever, my sign of the NDA,

Scott Benner 1:09:23
you give up your rights.

"Laura" 1:09:26
Yeah. But again, that was also almost always in exchange for money. He was here, we'll give you $10,000 But we need you to sign this. And it's like, and of course, when I was younger, I did it. But now I'm like, oh, no, no, because your $10,000 is pocket change compared to what I'm gonna get from you. If

Scott Benner 1:09:47
you guys break these when they turn you in. Yeah. Wow. I can't believe the whole world like works like this. I'm gonna get a small cabin near a running Creek and give up. If you're all lucky, I'll get a good dinner. connection and keep making the podcast but I'm getting out of this. Like that's it. You know, I'll leave you with this. My neighbor's, like I told you like 1520 years older than me. And I was talking to him recently. And he just looked at me super seriously. And he said, Scott, I don't know how much money you think you need to get through the rest of your life, but get it together as fast as you can and stop working. It's my best advice. And I was like, Okay, thanks. Goes to Christmas future. Like, like, sad Ghost of Christmas Future. He's just like, I have medical problems now. And all the things I thought I was going to do I can't even do when I did save the money, but it took me longer than I thought I was going to. And he starts laughing. He goes, your generation is going to need way more money to live than my generation. Did he laughing and I'm like, Oh my god. Okay, I'll quit now. He's like, Oh, you can't quit now. You're gonna save up money first. And it was like, but you don't think I'll be able to save it up? And he goes, Yeah, probably not. And I was like, so I just worked till the end. And then he goes down and your feet hurt and you die. And I went, okay. Alright, thanks. I was like, again, everybody with the good news? You know, Damien was like, All right, Laura, thank you very much. Hold on for me for a

"Laura" 1:11:07
second. Sure.

Scott Benner 1:11:14
Like to thank Laura for coming on the show today and sharing her knowledge about the human resources and insurance processes and the back room things that we don't see. This episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next one.com/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 888-721-1514 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. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community, check out Juicebox Podcast type one diabetes on Facebook. If you're enjoying the cold wind podcast, please share it with someone who you think might also enjoy it. And if you know a health care professional, who would be a great guest on the podcast, please share it with them as well. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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