#1480 Ergo, You Probably Have Hypothyroidism

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Tammy’s 13‑year‑old was diagnosed with T1D a year ago; she shares her journey from anger to acceptance as her family navigates autoimmune challenges.

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

Tammy 0:14
Hi, I'm Tammy. I have a son who is going to be 13 in a couple of weeks and he was diagnosed with type one almost exactly 11 months ago.

Scott Benner 0:26
Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d exchange, org slash juice box, and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t, 1d, exchange.org/juice box. It should not take you more than about 10 minutes. A g1 is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure you check out drink ag one.com/juicebox to get this offer. Today's episode is sponsored by the tandem Moby system with control iq plus technology. If you are looking for the only system with auto Bolus, multiple wear options and full control from your personal iPhone, you're looking for tandems, newest pump and algorithm. Use my link to support the podcast, tandem diabetes.com/juicebox check it out. The show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get ever since cgm.com/juicebox

Tammy 2:25
Hi, I'm Tammy. I have a son who is going to be 13 in a couple of weeks, and he was diagnosed with type one almost exactly 11 months ago. What's his name? His name is Devin. Devin, 11 months ago? Yeah, wow, that's almost exactly

Scott Benner 2:44
that would be very, very, very recently. How about that? Yeah, yeah. Other kids. I

Tammy 2:50
do have an older son who's 15, and that that's it, though, just the two, okay,

Scott Benner 2:54
uh, any type one in the family, extended aunts, uncles, there's

Tammy 2:59
quite a bit of diabetes in general. On his dad's side, his dad is type two at this point. I believe he's got a couple of I don't know there's at least one grandfather that's type one, and I think the other one might have been type two, and they're all you know passed at this point. I'm not sure if there's more on his side. There isn't any on my side, but we do have hypothyroidism on my side that I know of, but besides that, I don't know of any other autoimmune, any other type one stuff. Okay, my older son actually is has hypothyroidism. Found that out accidentally when he was like three or four testing for allergies. So he's been on medication for 12 years.

Scott Benner 3:40
12 years. How old is he now? I'm sorry, he's 15. Wow. Oh, you figured that out when he was three.

Tammy 3:45
Yeah, he was having a lot of allergy symptoms, and so we were we didn't want to do a skin test with him. He's a toddler, you know. So they let's do a blood test, and that came back. We know he never had any symptoms or anything. Of course, he's three, so how would you even really notice any symptoms or anything at that point. But did that blood test and were like, hey, you need to be on medication, okay? And they said this may actually help with his allergy symptoms, like, it's somehow kind of interconnected. I was like, that's interesting. I don't remember if it helped, because at that point, we started doing other allergy, you know, treatments and stuff anyway, so Okay,

Scott Benner 4:19
listen, that's crazy, because you didn't know anything about autoimmune stuff. Do you think of allergies as auto immune? Now, I

Tammy 4:27
think they can be connected. It seems like they can be at least. I was told that, like, like I said when my son was diagnosed, and now I'm kind of dealing with that myself. I'm kind of going through my own thyroid battle. I'm thinking I might be trending towards hypo as well. I had some blood work done a couple of months ago, and it was very close to the edge of normal and abnormal. And I'm doing more testing next, actually, next week, to see if it's continuing to trend that way. And so I've had conversations with my doctors. I now have an endo ENT, all these people I've been working with because I've got. Bow drills and all this other stuff too. So dealing with a bunch of crap too, but they're like, it can be related. It can be, you know, it can I've had awful, awful allergies for, I don't know, the last four or five years. Probably I have a severe allergy to dust and a bunch of other stuff. And we got it under control, and then within the last year, it started kind of springing up again. And I'm like, I didn't put it together until I actually listening to one of the episodes, probably about thyroidism, and I was like, oh my god, they said that about my son. And now I'm dealing with a lot of allergy symptoms that I had under control before, and now they're all kind of coming out. And it was around the same time as my last normal test, and now I've got this close to abnormal test, and I'm having all these symptoms and, you know stuff. And so part of me thinks, yeah, it might be, it might be related. I mean, I'm no doctor, I'm no scientist. I don't know anything like that, but my experience seems to be related at least a little bit.

Scott Benner 5:57
Yeah, I don't, I mean, like, I'm not a doctor, obviously, but seasonal allergies as an example, are your body overreacting to something that feels like you're, you know, being hit by an outside influence, and your body is overreacting to it, you know, having a larger response than is what's probably necessary. You know, plenty of people get dust in their eyes and their eyes don't explode, you know what I mean. And like, start hearing and make you like, that doesn't happen to everybody. So the person that it's not happening to, are they not having an over modulated response? And I don't know, like, you know like, you the your kid has this big allergy event, and then they figure out hypothyroidism. And then, you know what I mean, like, it all feels connected to me, is what I'm It does. Yeah, it

Tammy 6:44
does. And I'm also wondering, you know, if you know, we talk about autoimmune diseases kind of being triggered by an event of some sort, I'm also kind of curious is, is every autoimmune disease triggered by an event? You know, like, we talk about viruses and stuff, and how type one just exploded after COVID, and, you know, that was the thing that kind of triggered your body into killing itself, you know. So I don't know the answer to that. I'm curious if there was some type of event that caused that to start to come out. You know,

Scott Benner 7:14
my son was diagnosed in college during an incredibly stressful time. So maybe, like, I don't know, but like, but that's also to say that, you know, when he was checked by the doctor, he had nodules too, and like, were they just there and it just finally gave up, or, I guess we don't really, really are never gonna know for ourselves, personally, and

Tammy 7:33
I think it's different for everybody, you know. I mean, we know that with type one, everything's different. So why wouldn't a thyroid issue be also different for everybody, you know? Yeah, I don't know. I was in a, I was in a car accident almost two years ago now. And I can kind of link, now that I think about it, now that I'm looking back and I am mad that I didn't put it together. But I can kind of link some of hypothyroidism, you know, symptoms starting sometime in that first year,

Scott Benner 8:00
kind of traumatic thing happened to you? Traumatic? Yeah, yeah. I had broke

Tammy 8:03
a lot of bones and had surgery, and it was really awful. But that could have very well been, you know, my body's trying to recover from injuries, and, you know, could have been a triggering event. I don't know. I don't think anybody would ever be able to tell me that for sure, but it makes sense.

Scott Benner 8:15
Yeah, no, it's interesting. It's tough too, because if you try to talk about it online, too much, you come off way. Conspiracy ish, like 100% right? And it's funny, because I see people trying to have those conversations, and, I mean, often they go very well, but if you're a poor typing communicator, right, a poor written communicator, and you and you just sort of say it a slightly wrong way, you come off like that. COVID gave me the and, and then, you know, people are like, then it just, you know, and everybody's politics comes out in their head, and which is such a strange thing, that COVID is a political idea.

Tammy 8:50
Oh, my. Well, a funny story about COVID. So Devin actually had COVID. It was probably about a year before he was diagnosed with type one. And that was brought up in the hospital, you know, because he was asking, like, where did this come from? Like, how this certainly, like, well, you know, sometimes viruses can trigger, you know, this response in your body and this and that. And, you know, he's like, Well, I had COVID. They're like, Yeah, that could could be. There's no way to know. They're just kind of explaining to him, it could be the flu, it could be, you know, some injury, you know, whatever. And so he called my mom on the way home from the hospital, and she's like, Oh my God. What happened? He's like, Well, you know, they said it, you know, could have been a virus that I had that started this, you know, it's but he tried to explain it to he explained it very well for a 12 year old, you know, he was like, it's always been in me. Is this just like a triggering event that started? It could have been a virus. It could have been COVID. When I had that last year, she goes COVID, gave you diabetes just like you just said, like, exactly like that. And I was like, Oh, my God, no, no, right? That's not what happened, if

Scott Benner 9:49
you look back at it, Arden got diabetes after Coxsackie virus, right? Really? Yeah, and that's a really common one, by the way, so it's so. Common actually, that a gentleman that came on here one time, CEO of the company called prevention bio, that was making tea sealed, which I guess eventually after it came to market, they sold to Sanofi. But while he was on talking about T Z, he said, I'd love to get a vaccine for Coxsackie virus to help slow down people's type one diabetes. And I was like, at first, I was like, What's What's he saying? And then I realized what he was saying was, is that Coxsackie appears to be the trigger for so many people's type one diabetes that what if we could just stop them from getting Coxsackie? Would the diabetes take longer to arrive or never arrive? And I was like, wow, that's, like, that's some chest level thinking about the idea, you know, yeah, but 100% that happened. Arden, wow, yeah. So it's interesting. Also, those episodes about those early episodes about T Z old, I think back then, was called to miss a blob. They're interesting to listen to. Yeah. Arden was like, you know, barely two years old, actually, probably before her second birthday, she got Coxsackie virus, which is colloquially called Hand, foot, mouth, yeah. And, you know, he went to the doctor and did the things, and then some weeks later, I was like, back at the doctor. I'm like, I don't understand. Like, she's like, still sick, you know? And he's like, it looks like the hand foot came back. And I remember him saying, that's weird. That doesn't usually happen. Yeah. I was like, What do you mean? He goes, it's more like, like, chicken pox, like you get it and then you don't get it again. That was his explanation at the time. And I was like, Well, it seems like she has it again. He's like, Yeah. And then it's a couple weeks later, and she had type one, had it completely cleared up in between, we thought it was gone, and then, and then suddenly it felt like it was back again. So anything I say out loud is just me guessing was her immune system. Like, oh, Coxsackie, I got this. And then in the middle went, What's that over there? Is that her beta cells? Yeah, maybe I'll jump off this Coxsackie and go do this for I have no idea. Obviously, I'm cartooning it up, and it's not how it actually works, but, like, that's how it felt in the moment, right?

Tammy 12:03
But how would it go back to the original thing? Yeah, I mean, you know, like you're saying it's kind of it moved on, and now it's doing this now, but at the same time, it's like, let's do that again. That was really fun. I don't, I don't understand. And

Scott Benner 12:13
I might just be again, you know, doing that thing where people, you know, say their dogs feel a certain way. I might just be putting something onto Coxsackie virus that, uh, I do that a lot. Doesn't really exist, but I think that's kind of the point is that that happens to a lot of people, which is, they see something, and they go, Well, this is what I think happened. I'm like, Yeah, you probably don't know, but it feels very important to people, doesn't it? To like, to know what happened?

Tammy 12:37
Yeah, it does it. You gotta have something to blame you think that's it? Yeah, I really do. Yeah. I that's at least a big part of it, in my opinion. Of course, I don't know anything either. I'm very new to this, but that's I was. I was very angry, very, very angry. Why him? Yeah, yeah. You know, everybody in the hospital kept saying, Oh, he's young and he's healthy, and he's active, he's he's gonna be fine and he's healthy everybody, literally, every nurse that came in, every single nurse, every single doctor, he's healthy and active. That's great. And I'm like, okay, then why? You know, like, that's where my brain went. Was like, He's the healthy one. Why are we doing this?

Scott Benner 13:12
Yeah, because the other one had had the hypothyroidism earlier. Like, he's

Tammy 13:17
got ADHD, he's got bad allergies. He's been doing allergy shots to try to get those to go away for like, four years. The poor kid's sick of it. But we still have another year to go. Like he's he's got issues, nothing like threatening, you know. But he has

Scott Benner 13:31
ADHD, too. Yeah, that's another thing that, after talking to people forever, I see I feel like is inflammation related at times. You know, I mean, I don't listen again. Barely got through high school, I probably wouldn't be listening to me, you know, if you're looking for absolute certainty, but a lot of people come on here say, Hey, I have type one, or someone in my family has type one, etc, so on. And there's also ADHD, there's also this, there's also, you know, like, I kind of famously on here say, like, how many people have come on here and said they have, like, an extended family member with bipolar disorder? Like a lot of people,

Tammy 14:06
yeah, I've heard you. I've heard you ask that a lot. Yeah, that's that's a really interesting connection.

Scott Benner 14:12
That's weird, you know what I mean. But again, like, at some point you also have to go live your life. You can't spend your whole life sitting around wondering, like, how did this happen? I mean, I understand the feeling. Did you I was gonna ask you earlier, were you able to let that go eventually?

Tammy 14:24
Yeah. I mean, it still pops up here and there, but it's not anything like, it was like, it was really, really intense. I went to a very, very dark place. Just, you know, I it is, you kind of want to know why it happened, how it happened, so that you can put it aside. It's like, once you know that, then you can move on to the next piece. At least that's how it feels in my brain that you can Okay. I know how this happened. I know how we got here. Now, what's the next step? You know? It's like, it almost feels like you can't move to that next step until you get that piece figured out. And I don't know why that is, but if you look at like other parts of your life, you know you. There's similar things that happen, like my tree fell down, right because it was windy and we had a storm. I understand what that happened. Now the next step is to take care of it and make sure it doesn't happen again, or take the tree out, or whatever, like you were talking about. And that's a really awful example, but that's, that's kind of how people's brains work. You need to know where this why and how. Okay? And now let's, let's solve the problem, or let's move on to whatever the next piece is, whether that's fix this, or learn this, or go here, or, you know, whatever it is. Yeah,

Scott Benner 15:29
no, I hear you. Do you think it was time that got you through it? Did you go to therapy? Like? Did you talk it out? Did you like? Do you feel like you know how that happened? Today's episode is sponsored by a long term CGM that's going to help you to stay on top of your glucose readings the ever since 365 I'm talking, of course, about the world's first and only CGM that lasts for one year, one year, one CGM. Are you tired of those other CGMS, the ones that give you all those problems that you didn't expect, knocking them off, false alerts not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link ever since cgm.com/juicebox, to learn more about the ever since 365 some of you may be able to experience the ever since 365 for as low as $199 for a full year. At my link, you'll find those details, and can learn about eligibility ever since cgm.com/juicebox check it out. This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pump and algorithm, the tandem Moby system with control iq plus technology features auto Bolus, which can cover missed meal Bolus and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandem diabetes.com/juicebox, this is going to help you to get started with tandem, smallest pump yet that's powered by its best algorithm ever control iq plus technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead, and it adjusts insulin accordingly. You can wear the tandem Moby in a number of ways, wear it on body with a patch like adhesive sleeve that is sold separately. Clip it discreetly to your clothing or slip it into your pocket. Head. Now to my link, tandem diabetes.com/juicebox, to check out your benefits and get started today.

Tammy 17:36
No, no, I don't. I don't. I can't pinpoint the moment where I felt better. A lot of it was our experience with our doctors, which is why I wanted to talk to you anyway. But when, when we kind of got through that disaster, it was like a weight had lifted, like a huge weight, just off my shoulders. I literally felt it go up into the sky. You know, it was, it was incredible, because on top of being angry and on top of being sad and, you know, disappointed and frustrated and everything, everybody always feels in this scenario, I was dealing with assholes in the doctor's office that I couldn't get straight answers from that I couldn't get any information from that were treating us like children. It was, it was an awful, awful experience. So it combined that with what everybody feels in this scenario. And I just, I was in a really awful place, awful, awful, awful part of what got me out was Devin just being super good about this. He definitely had his moments where he would just refuse to eat, refuse to give himself insulin, or he would give himself in then refuse to eat because he was really angry and frustrated. You know, a couple of scary moments, they're like, Okay, I guess I have to call an ambulance because you're refusing to eat. I can't just shove food in your mouth. He had a lot of those. We had a lot of discussions, a lot of talks, and I think that helped him, that helped me. I kind of said, you know, this is where we're at. It sucks. Everything about this sucks. If you're feeling it. Tell me, Don't treat me like garbage. Don't yell at me. Don't scream at me. Let's Let's not fight about it. We're on the same team. Tell me that you're feeling that way, because I'm probably feeling that way too. So we'll sit down. We'll cry about it, we'll scream about it. We'll do what we got to do, and then we're going to move on. I refer to like the idea of a windshield wiper. Okay, there's a lot of crap going on here. We need to clear it off so we can see. Let's get rid of all those emotions. Let's, let's get them out of us, not ignore them, obviously, but like, scream, yell, cry, whatever we need to do so we can clear that off and see where we're going and what we need to do next. So a lot of conversations like that with him. I mean, that was me knowing that was the right thing to say, but I couldn't do it for myself. That was me trying to tell him, like, it's fine, you know, it's fine to feel all of these things. I feel them too. If you're feeling it, I'm feeling it, you know? Well, we'll never understand exactly. I'll never understand exactly how you feel in this scenario, and you'll never understand how I feel in the scenario. But we're very much on. On a similar page. So let's work through it together, because it sucks.

Scott Benner 20:03
Where or how did you learn to do that, to do what I mean, be so emotionally intelligent and like, handle that situation so well? Were your parents therapist like, did you, God, know, quite the opposite. Okay. Did you have one of those experiences growing up where you were like, Oh, God, like, I now I know not what not to do like, it was that it or like? Because that's a really like, I think, a very measured, intelligent and thoughtful response, and that it sounds like it worked for you, so you actually implemented it, put into practice, and were patient about it, because it did take more than one, one conversation I would imagine. So, oh, yeah, yeah. How did you know how to do that?

Tammy 20:44
That's a great question. I don't know if there was anything necessarily like from childhood that I there were a lot of things where I was like, yep, never doing that. Like that was, yeah, you know, you know, parents acting this way, or treating people this way, or whatever, like they weren't bad people. But, you know, I don't want to be like that, but I don't know that that's where this necessarily came from. I'm not a licensed counselor or social worker or anything like that, but I do counsel a lot at work. I'm a probation officer, so I'm, I'm working with people that are having going through some going through some stuff, and they're, they're having a really hard time, and so maybe learned through that. I mean, do you

Scott Benner 21:23
think of it as common sense when you, when you think about it a little bit? Yeah,

Tammy 21:28
but it's hard to get there, though, and I recognize that too. It's not, it's not easy to to really acknowledge your feelings, acknowledge somebody else's right that that's incredibly difficult for most people to acknowledge somebody else's feelings, you know, and myself included, I'm not perfect at that, but, I mean, I can see what's going on with my kid, but couldn't do it for anybody else, probably, but you know, or my clients at work, I can

Scott Benner 21:50
your husband this one day,

Tammy 21:52
has no idea. I have no idea what's going on with him, but my clients at work, I know exactly how and my kids. There's something to be said for the work that I actually do and what I've gotten out of that, there's been a lot of trainings that I've done, and I actually do trainings myself, like, I go to trainings, but then I also run trainings and stuff like that. So like, a lot of those things have really helped me understand other people. Yeah, no, it sounds like it, it kind of recognizing what people need in certain scenarios. Like, like, I, you know, like I said, I train people at work, so I'm trying to really get into their personality and understand what they need in this scenario. Are they this type of learner? Are they that type of learner? So I'm doing that all the time anyway. I guess that's not really the same thing. But I think that has kind of built up. I guess,

Scott Benner 22:38
no, it sounds like, is that an on the job training thing that you learned? Or did you go to college and then get the job? Well,

Tammy 22:44
yeah, my job requires a bachelor's degree, but I don't think I learned anything in college.

Scott Benner 22:50
I'm hearing that a lot from my children recently, yeah, be

Tammy 22:53
honest. That's how I got into the field. I didn't know what I was gonna do when I went to college, so it was a few years of exploring different classes and stuff before I got into my field. But that's where I figured out this is what I want to do. So it was at least beneficial that way. But did I learn anything? Not really. Yeah,

Scott Benner 23:06
that's something. How long you been doing the job? About eight years. Have you gotten better at it? Or were you just instantly good at it? I've definitely

Tammy 23:15
gotten better at it. I don't think, I don't think anybody's doing their job right, if they're not learning something new every day or getting better at it in some capacity. I asked because,

Scott Benner 23:23
isn't it interesting that if your son would have been diagnosed earlier and had this experience, you would not have had the skills at that point maybe to deal with it the way you did? Yeah,

Tammy 23:33
I may have reacted differently.

Speaker 1 23:35
That's very possible. What did you want to come on the podcast for? I don't know. I forgotten. I forgot

Scott Benner 23:41
the look, hold on. A second, hold on. I figured out it says,

Tammy 23:44
here this doctors experience. I listened to your the doctor one where everybody's awful stories, oh,

Scott Benner 23:52
the cold wind stuff. Yeah,

Tammy 23:55
yeah, that's I listened to a bunch of those. And I was like, Oh my God. Like, sounds way too much like my Not, not too much like my experience. But there's, there was a lot of similarities there. And I just, I, of course, I went through the experience and then listened to those, and I was like, holy cow, this. I'm not the only one like, who's been dealing with this. I'd like to

Scott Benner 24:13
hear about your experience. Also, by the way, for people listening, I would love if more people did those like, there was a fury of people who were willing to come on and record them, and then it kind of stopped, which sucks, but if you're a health care provider and you want to tell me about what really happens at your job, and not the stuff you tell people, but what's really happening, please come on like, I'll make you completely anonymous. We'll change your voice. No one will know it's you. What was the experience that you had with your your son's health care or or, I guess either your kids.

Tammy 24:43
Well, the funny thing is, we already had an endocrinologist, because my 15 year old was, you know, seeing her every six months when we were in the hospital. She was there, and we got, you know, all the same stuff. Everybody else gets all the rules that don't work, and the the books of information that are different depending on who you. Ask and all that kind of stuff. But we, you know, we met with all the educators, nutritionists and all that kind of stuff and and one thing that kind of blew my mind was how specific the details, the math and everything. When it comes to insulin, you have to round up here and do this and add this and, you know, and you have to stare at this syringe and make sure it's in the exact right spot. And then, you know, like, it's all this very exact stuff. But then, when you talk to a nutrition you talk to a nutritionist, they're like, Yeah, that sounds good. You could eat that. Sure. That's okay. It's super vague. I'm sure you've probably heard that before, but that's incredibly frustrating for somebody like me who, like, I need like, actual like, directives, guidelines in this scenario, because I know nothing. I hate being the guy that doesn't know anything. Like, I don't want to be the new guy at work, you know, I don't like that, so not knowing stuff just was driving me insane, and getting different answers from people was driving me insane. And I know everybody says that, and that's not a unique experience, but that was another thing that kind of added to my to my downfall. You know, we would ask the nutritionist, okay, well, what about this kind of food, and what about that kind of food? And how would we kind of calculate this and that no actual answers. You know, nobody ever mentioned anything about protein fat. Nobody ever mentioned anything about, you know, candy. Actually, they did mention candy. Said, don't have candy if it breaks down into, like, pure sugar, so like gummy stuff, or, like, Sour Patch Kids, you know, no sugar, juices, stuff like that. And I was like, oh man. And he's just devastated. He plays golf and so he has, he does private lessons with a coach, and their thing is, they do competitions all the time. So if he wins, he gets a bag of Sour Patch Kids. If he loses, he has to do push ups and vice versa.

Scott Benner 26:30
So you're paying for this, by the way, for the torture of the push ups. That's nice. 100%

Tammy 26:34
yes. And I'm sitting there watching, this is how I learned to play golf when he was younger. I mean, now I just drop him off, you know, like he's old enough and can go do his own thing. But when he was when he was younger, I would stay and pay attention, and I was like, and that's, that's how I learned how to swing a golf club. No

Scott Benner 26:47
kidding, that's how I got free

Tammy 26:48
sour patch kids too. He's

Scott Benner 26:49
ever yelled at the instructor two for one sucker.

Tammy 26:55
I will next time. So he had just gotten this huge bag of sour patch kids, and his dad ate them after he heard this from the nutritionist at the hospital, but I felt so bad for him. He's like, You ate all my Sour Patch Kids. Because at the next visit, the first, like, the one week visit after we were out at the hospital and everything, we just met with a nurse, she started telling us, don't restrict anything. Like he can have sugar juices, he can have Sour Patch Kids, he can have whatever he wants. Just make sure you're giving insulin for and of course, Devon's like, Are you kidding me? Are you freaking kidding me, right now, she already ate my Sour Patch Kids. And I said, Call, call your dad, tell him to buy you another bag. I felt awful for him, but that's, you know, going back to the actual point here, different information depending on who you asked. And I hated that. And that's just a drop of the bucket for what, what we were dealing with. But you know, the nurse was saying, How many times have you checked for ketones? And I'm like, Well, none, because the book says over 300 she says, No, you should be doing it over 250 Okay, well, we'll do that from now on, I guess, you know, until somebody

Scott Benner 27:54
else comes along and tells me something different, I guess. And then, and then, how do I know which one of these things is important to do, and which isn't, yeah,

Tammy 28:01
exactly. I don't know. I I'm an idiot at this point. I don't know any of this. I don't understand any of it, and I'm just reading the book and trying to follow the rules in the book, you know. And I've since thrown the book away, of course, you know that that was just one of those things that just didn't make any sense to me. And so shortly after that, well, we got the first Dexcom at that visit, but nobody told us that it would be wonky for 24 hours. That was a really fun ride. And then we started getting ready to go back to school, and the doctor's office would not talk to the nurse at school. If you don't know, like that could just be normal, but this nurse is calling me constantly. She's like, I can't get them to talk to me. I have concerns about the stuff that's in the report, you know, in the in the medical plan and everything. She's like, I want to talk it over with them. I was like, Okay, well, I'll call them and tell them, I give you permission to talk to, you know, or something like that. I ended up having a call like, three times, like, Yeah, we don't do that. We don't talk to school nurses. Well, why not? If I'm telling you, you can, well, we relay the information to the parents, and then parents relay the information to the nurse. I said, okay, so you're a nurse, and she's a nurse, and I'm an idiot who knows nothing. Why am I getting involved? You're what you want to make me the middle man and pass on information that I don't have any knowledge of. That sounds safe, you know, like that sounds like a really stupid thing to do after

Scott Benner 29:13
you've shown me a number of times already that there doesn't seem to be any consistency on what you think, right, either, as an office

Tammy 29:20
well, and how do I, I mean, again, I'm a week into this. How am I? I'm not confident enough to pass on the correct information or relay it in the way that you want it relayed, right? You know, that seemed really, really odd to me, but

Scott Benner 29:32
three people in that triangle, it's the doctor's office who doesn't want to take responsibility you, who doesn't know what they're talking about, and the school nurse, who may or may not know what they're talking about. You have no idea, but Right? You probably think, like, Well, they probably know more than I do. Like, I just learned about this a week ago that That lady is at least a nurse, yeah? And by the way, who even knows if she's right, right? Yeah,

Tammy 29:54
right. Well, and what she had told me, what that school nurse had told me, she told me what her concern concern was, and it made. Sense to me, because Devin still was super high. He hadn't gotten down to even, like, a normal range at this point, you know, he was slowly coming down, and it was, you know, it was okay, but he was feeling low at, you know, 141 50, because he wasn't used to that yet. And I understood that we had at least gotten that information out of somebody, you know, right? And the nurse was saying, is this saying to treat him, if he feels low, I don't want to treat him at 150 Right? Kind of it was some something along those lines. I don't remember the exact details, but it was something like that, and it made sense to me. And she's like, so I just want, like, a temporary something added to this plan from the doctor's office saying, until, you know, blood sugar, stabilizing it, you know, something for these first couple of weeks when he comes back to school. Comes back to school, because we don't want to do the wrong thing. And it made sense to me. And so I was like, Okay, well, I'll get I'll tell them, they can talk to you, yeah, you know. But I, like, I said, I had to call a few times. And like, we don't do that, we don't do that,

Scott Benner 30:52
and that would be a nice thing to understand, really, to Tommy, like, by the way, because that 150 when he felt low, he really did feel that, oh yeah, 100% but at the same time, you know, it would be nice if someone told you, like, this is going to be a bit of a process. His blood sugar has been high for a while. His body got accustomed to that. It's getting accustomed to this coming back down. Because if you don't know that, you know there are people who will treat that 150 and then that'll be their target blood sugar forever. Yeah,

Tammy 31:17
right, yeah. And that's unfortunate, right? Because that's, that's not what you want. He doesn't like being over 150 now, you know, I wouldn't imagine, yeah, he feels like garbage at 200 which we don't, we don't get to very often, but he knows he and he remembers how that was 200 felt good for a while at the beginning. You know, it's like, I actually feel better now. It's, you know, it's garbage. It changes over time, yeah, and it seemed like the school nurse understood this and was trying to get something put in place, at least until he got, you know, down where he where he should be on a daily basis, and they just didn't want to talk to him. So I'm not sure that anything even happened there, honestly. If then, by the time it was all said and done, he was, you know, he was getting back down to normal range and was staying there. So it wasn't the end of the world, but it just seemed really odd to me, because she was like, I've never had a doctor's office not willing to talk to me. That's never once happened. She now, this is the district nurse. She was not the nurse for our specific school, but see, this was last school year. There was at least four or five other kids in his school with type one. So this shouldn't have been like, Oh my God, we've never had a type one kid before. Like, I don't know what to do it was. We've done this before, and we've talked to these doctors before, and this is the first time this has happened. I'm like, that's weird. That's really weird to me.

Scott Benner 32:30
Imagine being the school nurse too, where, you know, you have five kids with type one, you're probably hearing five different things from five different endos offices, right? Imagine how confusing that is on their end as well.

Tammy 32:39
I yeah, I don't. I don't want to imagine that. That sounds awful.

Scott Benner 32:44
Do you ever think, oh, they don't seem to know what they're doing about the diabetes. I wonder if they're managing my kids thyroid correctly. Yeah,

Tammy 32:51
I did think about that. Yeah. I mean, I did, yeah. I mean, but at the same time, we do blood work twice a year, we see what the numbers are. I didn't know what they mean. I do now I didn't really know what they mean, but I actually have looked back since all of this, at all of his test results to make sure that they were all around the same number, that there wasn't, like, huge jumps or drops or something that maybe should have been addressed. I mean, I don't really know much other than that. I know that it shouldn't go up by two or three points in six months, you know. So it seemed like they were managing it. Okay, yeah, yeah, luckily, luckily. So I didn't have to yell at somebody for something else if they yell at somebody else, yeah? Well, I mean, it would have been the same person, you know, and also my other kid, what are you doing with it? You know, it would have been that conversation. But no, we've we're no longer associated either, either of my kids, they both have a new Endo.

Scott Benner 33:43
Oh, okay, how about you? You mentioned earlier for yourself, what do you have going on?

Tammy 33:48
I started experiencing a lot of symptoms, and I didn't put it together that they could have all been related to hypothyroidism. And then I was like, Wait a second, you know, listening to episodes about it really kind of made me start thinking about it a little bit like, you know, you were talking a lot about, if you have symptoms, then you should be treated, regardless of what your numbers are. I remember something along those lines, and I'm like, I wonder if that's what's going on here. And I had had an order in from my doctor from my last, you know, annual checkup thing, to get my thyroid checked. I had to be fasting for the other blood work he wanted me to do. And I just now, just never found a day that worked. And then, like, two months later, Devin was diagnosed, so I completely forgot about everything else in my entire life. And then it, you know, just dawned on me a few months ago. I was like, I think that's still in there. I think I could just go get tested for that. And so I did, and it was two points higher the TSH was two points higher than it was two years ago. I was like, that's interesting. And so, of course, the doctor it was still within normal range, but the doctor was like, it's normal. You're good. And I was like, Wait a second, I'm experiencing symptoms. I sent back a message, and I'm like, I'm experiencing symptoms. I'd like to talk more about this and explore other ideas for your medication or something else. You know, I just want to talk about it. So ended up going in and he did a full blood panel. My t4 was at the lowest possible number it could be to be in the normal range. And so, of course, I'm googling all of this, and it's like, okay, low t4 high TSH. That equals hypothyroidism. And he felt around my neck and said, Oh, it feels a little enlarge. My send you for an ultrasound. Okay, so again, with the blood work coming back, he's like, everything's normal. And I'm like, Yeah, I don't think it is. I really don't think it is. I think I'm I'm heading in a bad direction. But again, I'm not a doctor, but I, you know, he referred me to Ent. I sent a message back and said, Why Ent? And why not Endo? Can I go see both so I can get all of the information I could possibly get. I already had an ENT established, so I was just going back to somebody I already knew. So I had that appointment. I got him to send a referral for Endo. I went and had that appointment, did an ultrasound, did all the things. So now, at this point, where, where we stand right now is, I'm doing more blood work next week, because it would have been a couple of months since the last one to see where we're at now before deciding about any medication, she was willing to give me medication, but she's like, if you don't actually need it, and this is all, like, perimenopausal symptoms, because it's all the same stuff, you know, then your hair is going to fall out. I'm like, Cool. That's what I'm trying to stop from happening. So that sounds awful. So let's just, you know, let's just hold off and see what the next one says. Yeah, go from there. The next

Scott Benner 36:19
one's gonna say worse than the last one? Probably, probably, yeah, probably. And

Tammy 36:24
so on top of that, I've got a few nodules, which I know are super, super common. One of them is right on the cusp of being a little bit bigger than they want to get a you know, and wanted me to go do a biopsy, so I did schedule that.

Scott Benner 36:38
They're gonna give you a biopsy, but they won't give you a Synthroid. No, you get, though she did get Where do you live? So I don't move there, Chicago,

Tammy 36:47
Chicago area. So I'm

Scott Benner 36:49
kidding, you can hear it in your voice. We all know you're from Chicago.

Tammy 36:53
You can, of course, you don't hear it. No, I live here. Of course I don't hear well, you know what's funny about that side, that not relevant story at all. I went to University of Illinois in Champaign, so that's central Illinois, and I actually lived down there for several years after I graduated. So I was down there for probably seven years, six or seven years, and I was working in a town that was about a half hour east, and it was like Southern like, you know, like in the college town, you don't get a lot of accents and stuff. You mean the local people, for sure, but like, the town I was living in was all people that were from that area, and they're very Southern accents. And I started hearing it towards the end, before I moved back up north, I started hearing myself saying words in certain ways, and I'm like, Oh my God, I've got to get out of here. This is awful. When I did move back to the area, I was working at a police department, and this guy comes in, and he's like, the super fans, like hardcore. And I'm like, oh my god, I never heard this before. Now, like it was normal to me when I lived here, yeah. And then when I moved away, I started sounding like them. And then when I came back, I could hear it. It was very strange how that worked. But then, you know, once I was here for a while, like I was, I don't even notice it anymore, but it was like, everybody around me was the super fans, like the embarrassed, and I was like, Oh

Scott Benner 38:10
my god. So you have, like, a mix, like it is obvious that you moved away a little bit, because you're not doing the SNL like skit, right, but you're also not drawn out and more whiny, like Wisconsin, oh yeah, right near Chicago feels like Wisconsin, but shorter, if that makes sense, yeah, I'm definitely Midwest. Yeah, definitely midwest. I just like, when you were like, I'm in Chicago, and I was like, oh, did she think we didn't know that

Tammy 38:38
you asked all right, I definitely talk too fast. I could never be in the South. Like, I will not survive there. I will be like, Okay, can you just speed it up already? Just talk fresh

Scott Benner 38:47
start. Everything's so slow when Arden was in Savannah, like, just everything, you were just, like, I just want to eat and I want to leave. I'm not looking to have an experience here.

Tammy 38:58
No, I would never survive. I actually, when I, when I train at work, I have to actively think about slowing down what I'm saying and make it come out in a way that's easily heard and understood, versus me, where I just kind of like it. My normal is I go off on tangents and I'm just talk, talk, talk. I get I get too fast. I

Scott Benner 39:17
don't think I speak quickly at all, I mean, and I know I do, but it doesn't occur to me that way.

Tammy 39:22
Yeah, it doesn't either. But I have to force myself to actively think about it when I'm training other people so that they aren't getting lost and looking at me like I'm nuts, which they often do. So is what it is at the

Scott Benner 39:34
end of your story there, like I just would tell you, I mean, go get the blood work, but it's ridiculous. If you have the symptoms, your TSH went up two points. You have nodules. That's not perimenopause. Also, how old are you? Not that part, I'm 45 Yeah, you know, do you think you're in perimenopause?

Tammy 39:52
I sure could be. I suppose I've got all the symptoms. Well, what are the symptoms? You're tired, similar. You can't sleep. Yeah, yeah. Like, the exhaustion is, like, overwhelming all of a sudden. Like, I laugh about how I haven't slept in 15 years, because that's when I had my first kid. And it's not a joke to a point, you know. Like, it's an when you have kids, it's an exhaustion, exhaustion like no other you don't. Nobody understands it unless you're a parent. Like, it's a tired group never felt before, at least in my experience, and a lot of the people that I know, the constant broken sleep breaks you, and you just don't get that solid sleep anymore. So I joke about, like, I haven't slept well in 15 years, but like, this is something different. This is, yeah, no, I'm awake for hours in the middle of the night, and I and I'm exhausted, like, to the point where I come home from work and, like, I need to make dinner, I need to do this, and I'm like, I can't do it. I just, I physically cannot do it. I have to sit down.

Scott Benner 40:43
I think that that one thing that happens there is that, that the slow matriculation into exhaustion and the, well, I have kids, I'm older now, blah, like, all the things that make you feel like, Oh, I'm supposed to be tired. But I'm telling you that 45 year old people don't feel like that, yeah, if everything's working well, like, there's almost no doubt in my mind that if you go get that medication, that in a month, you're going to be like, Oh my god, I can't believe I waited this long.

Tammy 41:09
I know it's it's funny, when I started putting all the pieces together, I was like, God, I really hope I have this. There's an answer. There's a way to make me feel better. I just want to feel better, you know, and it's kind of crazy, but

Scott Benner 41:23
no, I wish you luck. I'm going to tell you right now my red flag in your story is when the doctor got the right answer and then sent you to an ENT, because that's that. What I'm hearing then, is that that doctor doesn't understand thyroid,

Tammy 41:36
right, right? I mean, good for him for sending me to somebody that understands. You know, what's interesting is that I saw both endo and ENT, and they both said the nodules shouldn't have anything to do with my levels.

Scott Benner 41:47
I mean, that's all well and good, but the levels are up and my and I'm having all kinds of symptoms,

Tammy 41:52
right? And I thought that was odd, because I, you know, how does that there being something on this thing not affect how it works?

Scott Benner 42:00
Well, how did somebody tell you not to test for ketones to 250 and somebody else told you 300

Tammy 42:06
Yeah, they told me to give him 15 carbs if he drops below 82 and that was stupid. So it seems

Scott Benner 42:10
upsetting that a lot of your medical advice is like, you know what I heard, but that's coming from the doctor, instead of a guy with a podcast,

Tammy 42:17
100% 100% nobody mentioned anything about pre bolusing. You know, that's that's not a thing. Our doctor now talks about it. But did

Scott Benner 42:26
your wolf just kill the UPS guy? What happened there? Yeah, what was that? What kind of dog do you have? My god,

Tammy 42:32
she sounds mean, but she's not, no, not chocolate. She's

Scott Benner 42:35
a chocolate lab. Oh, just excited. Then I got you big and loud, a guttural thing, unless it was happening in a hallway or something was like echoing. I was like,

Tammy 42:44
oh, it's possible. It's possible I have locked myself in a room. So she is probably outside the door, which is a hallway, and it's open to, like the front door, so it's like a tall ceiling, so she could be there barking, yeah,

Scott Benner 42:58
an open floor plan. What are we discussing? We should turn this into an architectural podcast, tell people that your son wanted to stay home and be on the podcast, but you like a terrible person, made him go to

Tammy 43:09
school. I made him go to school. He's missed enough school. Yeah, he really wants to talk to you. He's listened to a bunch of episodes. When I started listening, I was writing down which episodes I thought he would really benefit from being 12, you know, he really picked up on everything. It was really, really incredible to see. And I think that was the other piece that I started talking about before, about how I kind of pulled out of this God, awful, dark cloud of doom that I felt like I was in and just couldn't get this together. Was that he was really, we were learning together, and he was picking it up. And he's basically independent at this point, which is, God, amazing, absolutely amazing. Yeah, that's incredible for I mean, he's almost 13, and we're not even a year in, and he's on it like he does stuff on his own. He'll change his car ratio. He rage Bolus the other day. What did he have? Pancakes? It's her first experience with pancakes. My God, it was awful, yeah. And he's like, I'm done with this. I'm just putting in five units skirt. And I was like, all right. And at one point he had like, eight units on board, which would have dropped him to like, zero, but not with those pancakes. Like, let's do it. But it didn't, you know, it didn't, obviously. But no, I was like, I'm proud of you. No, that's really what it comes down to. But

Scott Benner 44:18
Uncle Scott taught him that. What are we talking about here? What happened? I was partially joking,

Tammy 44:22
no, no, and I know you hear this all the time, but it was, well, we had one more experience with our doctor's office that just put me in a full on rage. And I had our I joined a couple of Facebook groups, and they were all gar garbage, and they were mentioning Juicebox Podcast and all that kind of stuff. And so then I started listening to that. And that's really, honestly, I'm not gonna lie this. I know you hear this all the time, but that really pulled me out, like I was saying before. I'm the kind of person that doesn't like to not know something that I'm trying to do. I just dove in. I listened non stop, all the way to work, all the way home, writing things down, sending them to Devon, you know, just. Well, this one, this one's really good. We're on our way to a golf lesson. We're listening to this one. This one's really good. I want you to hear this and really think about it, you know, like we were 100% learning this together. I was involving him in everything, you know, anything I heard, I would tell him about it. Hey, what do you think about this? What this is an idea we could try this, you know, he's just on board with it. I think that was a great way for us to do this. Instead of me just taking over management, this is what we're doing. It was, hey, what do you think about this? This is what I'm you know, I'm no better than him, and I didn't want to come across that way, you know, like we knew the exact same information about type one going into this, so why not share it with him? But 100% that's what kind of pulled me out of everything. Is just the knowledge I needed, that I absolutely needed it. I just went head first into it, and that's what worked for me. Well, that's kind of who I am, though. And it was really funny because months later I would talk to friends and or whoever, and kind of talk about that a little bit. It was like I just literally had breakdown after breakdown after breakdown, like, I can't do this. I can't I literally cannot. And people like, Oh no, you're so strong. I'm like, No, I'm not, like, I not kidding when I say I can't, I don't know how to do this, and I don't want to, you know, because the anger was still there. So on top of I don't know what I'm doing, it was also I don't want to, yeah, you know, I would tell the story later and say, like, you know, I just kind of just jumped right in and I learned everything I could possibly learn every spare minute I had of the day. And they're like, yep, that's you. And I'm like, what? Like, no, that's 100% who you are, all right? And multiple people across different areas of my life said the exact same thing to me, and I was like, okay, so I guess that is, I didn't recognize that until this all happened. That's who I am. Do you

Scott Benner 46:37
think you'll handle the next thing in your life differently? Because you know that about yourself now, probably interesting. Hey, how much of this is your husband involved in beyond eating those Sour Patch Kids?

Tammy 46:48
Well, that's my ex husband that did that one. Oh,

Scott Benner 46:51
wait a minute. Oh, sorry, I didn't realize. Okay, okay,

Tammy 46:55
and that's why we're divorced, because I ate Sour Patch

Scott Benner 46:59
Kids, you're like, that's the

Tammy 47:02
what pushed me over the fence. Yep, that was

Scott Benner 47:04
you guys were already divorced before the diagnosis, long before,

Tammy 47:07
yes, we've been divorced 10 years. Okay. Now I think I'm I am remarried, so we are a three parent team. My husband is physically here in the house, obviously, and pays attention. I tried to get him to listen to the podcast. He's like, I tried, but I just can't. He listens to podcasts all the time, but there, if he

Scott Benner 47:23
ever hears this, go yourself, I don't like that a lot. What

Tammy 47:28
about it like? I will tell you why. Though he he will listen to podcasts about sports. Oh, he's a boy. That's a boy. He is very much like he likes to learn new things, and it does, but he can't do it through that avenue. That's not his way of learning. And I understand that, like, it's not, it's not for everybody. I never listened to a pod, not one podcast. I don't think before this, I was like, podcast, okay, I'll give a shot, yeah, but that's not, that's not his way of learning. And I, you know, he listens for entertainment. I hear

Scott Benner 48:01
you. I think I've drug A lot of people into being podcast listeners that otherwise wouldn't have been. Yeah, I don't

Tammy 48:06
want to listen to another one, though, right? Like, it's still not necessarily my thing. But I think the first episode I listened to was the glucose goddess. And I was like, That's really interesting. People

Scott Benner 48:15
found that very, very interesting. Yeah, and she's got a huge YouTube channel. Now, by the way, I feel, I feel good about that. I tripped the powder upon it the other day, and I was like, my god, some of her videos have like, two, 3 million views, really? Yeah, she's, she's doing, doing a thing over there, just talking about eating food in a certain order, basically, right,

Tammy 48:35
right? I immediately told Devin about that, and it's, and it's funny, we just not that we didn't already know this. But we were at his wrestling mate yesterday, and he was like, Hey, can I get someone I want some candy. Like the concession stand was open because there's a basketball game going on too. And I was like, you don't need candy. We can have candy after dinner. And he's like, No, I just want some fine. Here you go. And he shot right up. And I'm like, see, this is why you can have all the candy you want, but for dessert after your meal, and he's like, yeah. He's like, Okay, fine. I was like, Okay,

Scott Benner 49:05
go back to his for a second to me joking about your, your husband's listening habits. So like, oh yeah, let's just be clear. He didn't hate me because some people just don't like me, which I understand at all. Okay, all right, not

Tammy 49:16
at all. Well, then I think it was just difficult for him to process the information in that way, he's he's add as well. So he just has to learn like that. This kind of information, just it needs to be given to him in another way. Yeah, so I told him there's transcripts he could read if he wanted to, but he's mostly just pays attention to me. Okay, so I'm learning everything, and he's kind of following my lead and learning that way, my ex husband, I mean, Devin. They're mostly with me. He works at night, so they're almost always here in the evening. So he doesn't have, you know, he doesn't spend as much time with them as I do, and doesn't have to deal with this as much as I do, but I do share as much as I can. And Devin, you know, obviously he knows what he's doing. They're getting there. Yeah, it's just, it's a lot harder. You don't when it's not in your face and, you know, yeah, on your mind constantly, like it is with

Scott Benner 50:05
me without the face time with it. You don't pick it up as quickly, but you do think he's getting it just more slowly. Yeah,

Tammy 50:10
that's awesome. Yeah. And I've told him to listen to the podcast too. I'm not sure if he has or not. I haven't asked because I don't want to be that person, but it's really helpful. I sent him, you know, a few of the lists, you know, the pro tips. I was like, Absolutely. This is where just do this. If you do nothing else, just do this. Yeah, you know, that's awesome. And I

Scott Benner 50:29
have to tell you, like, there's times when people talk about this that I'm like, Oh my God. Like, if you were coming from the outside, I can see how crazy this all sounds like. Our kid got type one diabetes. But don't worry, I found a podcast. You just need to listen to it. It probably sounds ridiculous. Yeah, you're right. I didn't think about that

Tammy 50:44
because I at the point, at that moment, I didn't care. And I'm sure that's how everybody is, like, I don't care. Give me, give me something. Give me some information. Help me, for the love of God, you know, like, I just, I'm I'm drowning here. Somebody give me something to try, and then they try something, and it works, and they come back. That's what happens, you know, like, it's, everybody's in crazy mode when they come to you,

Scott Benner 51:05
right? Yeah, it's, and it's not really, in hindsight, you can look back and go, just really wasn't all that much, you know, like, it wasn't really that much information. It sure as hell felt like at the time. It feels like that's why I was on a private call last night with all the group experts from the Facebook group. We were just kind of saying, Hold of saying hello and and catching up and everything. Somebody was talking about how well the podcast works at what it does. And I said, yeah, it just really it shouldn't be that way. Like, like, I shouldn't like, I think I was, I was joking with them, but I was like, I shouldn't be a deity. Because I tell people like, you might want to learn how, like, the timing of that insulin works, maybe Pre Bolus, a meal, or something like that. Like that is not crazy difficult to understand information. Or something that's like, but, but there it is. Like, no one tells most people, like the people who know hear it and go, yeah. I mean, I've been doing that forever, obviously, but a lot of people are not told that. And then, yeah, you know, it puts me in the position of looking like I know something, and I'm like, I'm just saying, like, Hey, I'd pay attention to this if I was you, because there's a lot of timing here in this and you're ill timed with your insulin. I think that's most your problem. And, you know, it's just, it's bizarre that that's a thing,

Tammy 52:15
you know. I mean that nobody's being told. You know, it doesn't make any sense. It doesn't make any sense everything you're talking about. It makes 100% sense to me now, you know, and I'm still like, what the hell happened at the beginning of this? Why wasn't I? And I'm very curious, now that we have a new end. Oh, I'm very curious what that experience would have been like. I'll never know, and that's fine. I'm just gonna go with it would have been amazing, and I wouldn't have been so angry for three months straight. Basically, after that first nurse visit, we I sent a message because I still wasn't comfortable changing anything, because I didn't have 100% grasp on what it was going to do and what it meant and everything. And so, you know, I'm still messaging them, hey, these numbers are aren't looking good. Like, what do we do? And so I got a message back, saying, okay, change this to this, change this to this, and this to this. And I'm like, that's a lot of changes all at once. Why? Why are we doing that? Because again, I'm back in I'm trying to learn everything I can mode, and I'm so I'm asking them, What did you see that made you change this number to this? What is the reason behind this? And I'm not understanding how these two make sense. You're giving him less insulin in this scenario, but more in this scenario. Aren't those just gonna balance out? And I understand why they don't know. But at the time, I was like, What are you doing? It's not gonna be the same end result, you know. And I couldn't get an answer. Did

Scott Benner 53:33
they say? How the should I know, Connie,

Tammy 53:35
they should have, they should have, because that would have been an honest answer, you know. But instead, what I got was, well, you know, if you, if you don't want to do that, you don't have to. You can change I'm not even kidding. They're like, you don't have to change it if, if you're not comfortable with it. I said I'm looking for what? Why? Tell me what you say. I'm having

Scott Benner 53:57
a real problem here. You're a doctor. What should I do? Do do this, this, this, and this. Why? Hey, listen, if you don't want to, don't

Tammy 54:05
do it. Stupidest thing you've ever heard you

Scott Benner 54:07
mother, oh,

Tammy 54:08
my God, I wanted to reach the phone to this nurse, because this was just, you know, one of one of the doctors nurses. But she's like, this is what the doctor recommends. So, you know, I can send her a message and see if she can call you. I'm like, Yeah, that would be great, because you're not giving me anything. And I know it's not your fault, but I'm trying to legitimately understand so that I can learn what's happening here, and so that I can change myself someday, because talking to people is driving me and starting so I want to learn, and they're not giving me anything. And I'm like, how I want to know what to look for, so that I can make this decision instead of going this route. I have to tell

Scott Benner 54:42
you that I'm stunned and I love somehow at the same time, when people tell that story where they're just like, hey, you know, I think you know this should happen. Can I please get a thyroid medication? You know, my TSH assist and I have symptoms the doctors, no, you can't have it. That's not what that is. Blah, blah, blah. And then the person persists a little bit. Doctor is fine, and they give it to him, like, Well, wait, which was it like? Is it like, Dude, I mean, like, is it not important? And it's gonna hurt me? Because I guarantee you, if you pushed a little harder, that doctor would have said, like, Fine, take it. What do I care? Imagine you're in an airplane, you're getting ready to jump out with a parachute, and you look at the instructor, and you say, Hey, listen, take a good look at my rig, is this right? And they go, yeah, it looks good. And you go, are you sure? And they're like, I don't know, but jump out of the plane anyway. You're either the guy, or you're not, or you're not. You either know,

Tammy 55:31
you know what I did in that scenario. I said, I want no responsibility with pulling any cords, any shoots. I don't want to do anything. I'm just here for the ride, dude, you're doing it all for me. That's what I did. You

Scott Benner 55:41
know the answer is liability, right? Like no one, not even your doctor, wants to say for sure, yeah, yeah, yeah. That's all. You know. What they should do before they answer your question, they should go nothing you hear in this doctor's appointment should be considered advice, medical or otherwise, always consult somebody else besides you. Well,

Tammy 55:59
who else am I supposed to go to? I'll just find more podcasts. I guess nobody else wants to take any responsibility. So we had one other conversation with them. What we've had multiples, but there was another one that is right along these same lines. So we met with, like, for a one month visit. We met with the doctor in the office. We met with the with one of the nurses, and she comes in, and I think she was a CDE, but she comes in and she's like, so my son was diagnosed, and when he was 10, he's, you know, 30 now, or whatever, and I'm thinking, Oh, thank god, somebody that understands what we're feeling right now. We're a month into this, and we're like, what is happening? So I'm like, okay, good vibe. Good vibe. Lady understands what we're doing. Nope. She was as snarky as they could be. She was talking to us like we were children. She kept looking at my ex husband because she's like, saying all these things, and again, it's all contradictory and kind of vague, and he's just kind of looking like, okay. And she's like, Are you with me? Are you with me? Are you following to only him? Yeah,

Scott Benner 56:55
honey, I don't think you're with you. And how come we're acting like only the man in the room gets to know the information I got you that was

Tammy 57:01
really odd. She just kept asking him, I don't know if I had a look on, if I was nodding along with her or something. That made it look like I was understanding. And he was kind of looking at her like, What the You talking about? I don't I don't know what the issue was, but he was real pissed after that. He was like, Why is she talking to me like I'm idiot? I'm like, I don't know, but she sure did, talking

Scott Benner 57:18
to him like he's an idiot and treating you like you're the concubine. I don't

Tammy 57:22
I don't know I had, and I'm the one who had all the questions. So I had a whole list of questions at this point. But that's not the point. She starts telling us, you know, about ketones and all this other stuff, and she's telling me because she's telling me that her son, still to this day, calls her to take care of his ketones, her 30 year old son who doesn't live with her, who's married with kids, and I'm like, How do you do that over the phone? Do you think I actually asked, I actually asked him, like, you think he would know what to do by now, if he's been typos, why does

Scott Benner 57:50
he have key tone so often? And how come I'm listening to you? Yeah, yeah, yeah. Obviously

Tammy 57:55
you're not fixing them very well. If you all the time, I'm

Scott Benner 58:02
sorry. I'm just imagining, like, you know, like if she was a fireman, and the kid was, like, my kitchen keeps catching on fire, but I call my mom because she knows how to put it out. Like, can we just maybe stop the fire from happening? Can we not Yeah, why are you maybe

Tammy 58:15
buy yourself a fire extinguisher? Like, how have you not learned how to do this by now, and at this point, like, I'm really, really new, but I know what ketones are, and I know how to fix them, you know? Like, I know how to give him water and insulin. It's not rocket science, so why can't this 30 year old man do it for himself? And how is she doing it over the phone? Like, okay, here's what you need to do. I'm so confused at this point. I'm absolutely just dumbfounded by he still calls me to fix his ketones. I'm like, I don't know what's happening here. So then the doctor comes in for two whole minutes, does nothing and leaves. I ask her questions. She refers me back to the nurse. And I'm like, the one who doesn't know how to fix

Scott Benner 58:54
the lady who puts her back, bring her back. That

Tammy 58:56
sounds like a great idea. Okay, so she comes back, and she's like, Okay, so here's all the new settings. And I'm like, new settings. What are you talking about? She's like, Oh, the doctor changed his basal to this, and his carburetion to this, and correction factor to this. And I'm like, I'm sorry. What just happened? She was here for 30 seconds. She didn't tell us that. I was like, Okay, why can you explain this to me? This is what the doctor put in the orders. This is what we're doing. All right, okay, sure sounds fantastic. So lo and behold, five days later, he had three lows in the middle of the night, like not pleasant lows. And I messaged her and I said, I don't think these are working. Can we tweak something? Can we change something to whatever? This is what happened. We've been experiencing a lot of lows lately. We had three of them in the middle of the night. Last night, we got to do something about this. She messages back and says, and this is actually the doctor this time, not the nurse. She says, I didn't see any lows in this history.

Scott Benner 59:46
I said, No, you made them when you changed the settings. Thank you.

Tammy 59:51
She said, I don't see any lows, but let's go ahead and change the settings in this message. Okay, so I messaged her back and say there was a low at I give her actual. Times of day. It was 442, in the morning. Like, can you look and see this, please? Like, it's like it was a low here, there was a low here, and there was low here. How do you not see that? You know. And she messages back and says, okay, yes, I do see that. Let's change them back to what they were before, before she saw them. And I'm like, What have? What if I just listened to what you said instead of recognizing that you didn't see what I was trying to point out to you and had to point it out again, and then you saw it and then changed again. What if I had just listened to you the first time and changed everything without that information? Do you think

Scott Benner 1:00:38
her message should have just said, Hey, listen, I really just wanted a Mercedes, and that's why I'm a doctor. Could you please stop asking me so many questions? This is very difficult, and I don't, I don't, I don't want to be involved. Seriously, I don't know how you can't figure that out. It was back to

Tammy 1:00:55
the the nurse I talked on the phone a couple of weeks before. Well, if you don't want to do that, you don't have to. Like, that's how it felt again. It was like, okay, yeah, I see that now. So let's switch it back to what was before, and then let's try something else. If I hadn't pointed out that she just completely disregarded all the data that was sitting right in front of her, I would have switched to these other settings. Now, granted, I know nothing awful would happen now, but at the time, I was like, What are you doing? You're not even reviewing the information before messaging me back, are you kidding? Are you like, this is a life threatening illness, you know, disease, like, what you you're not taking an extra couple of seconds to give me the correct answer. This is my kid. Man. Like, what on earth? And you've been our doctor for 10 years. Perhaps

Scott Benner 1:01:36
more importantly, it feels like back at that appointment, you just monkeyed with the settings for no reason. And I'm gonna guess now you also didn't look at the men. You're just like, Hey, make all this stuff stronger. We

Tammy 1:01:48
Yeah, because, you know what, she changed everything at the at the doctor's appointment, five days later, I'm complaining to her that it's not working. And God forbid she take responsibility

Scott Benner 1:01:55
for No, that's part of what happened there. Is she just like, I don't see any lows, like, I didn't do that. Yeah, I didn't do anything wrong. Maybe you did. There's a low right there, and she's, oh, lo and behold, there it is. Yeah, we should put the settings back to before I touch them. Like, that's not a lot of confidence in that conversation in those five days. No,

Tammy 1:02:12
yeah, no, it's not. And, you know, it was really frustrating. I mean, all of this was frustrating, but at the same time this is happening, all of these lows waking him up in the middle of the night, you know, like he's the kid that gets sick if he doesn't get enough sleep, like he will throw up in the morning if he did not get enough sleep over time. So this was going on for several days, and he ended up having to, I think, he came home from school early one day because he was wasn't good, or he stayed home a couple of days because he's just woke up feeling like crap and was thrown up, you know, and then by the as the day goes on, he feels fine. There's nothing actually wrong with him. It's just, that's just how his body reacts to the lack of sleep. He doesn't do well. And I'm like, he's missing school for this, and you're not even bothering to look like are you serious? Right now I'm so angry. And right around this time is when I started listening to the podcast.

Scott Benner 1:02:56
I'm gonna go figure out for myself. There's the guy in New Jersey. I think he can help me. Yes.

Tammy 1:03:00
Isn't that ridiculous? Yeah,

Scott Benner 1:03:03
no, no, you're not offending me. Of course, it is. I say all the time, like, this is my job. It shouldn't be a job that exists. It just shows it shouldn't. No, I shouldn't be able to pay for a sandwich with what I earned from this. But instead, maybe Sour Patch Kids. Oh, not even No. Have you seen the prices of things, everything, so, oh, my god, like a candy bar is $4 I'm like, we're all gonna get thin by mistake. Now, well, I

Tammy 1:03:29
don't know. All we can afford is rice and pasta, so I don't know.

Scott Benner 1:03:34
Yeah, okay, well, you won't get thin, you know, because your rice and pasta. Eat, eat a bread sandwich, honey. Mommy gets paid the next week again. Just put the bread on the bread. If you scan it together, insulin

Tammy 1:03:45
needs have gone through the roof because all we eat are carbs, and now I can't afford that either. So it's all just coming around full circle here.

Scott Benner 1:03:53
I guess I'm done pretending I don't understand what's happening. If you get a great Endo, good for you, awesome. That's wonderful. If you get the one that time you got, which a lot of you get. It's diabetes pro tip.com. Episode, 1000 to 1025 just listen to it. You probably have an A, 1c, in the mid sixes. It's about timing and amount, learning how to use insulin, doing some, you know, there's some tools you'll get. It's, there's a bigger picture around that, but that should get you going. And, yeah,

Tammy 1:04:19
you know, it really will. It really will. It's, it's kind of kind of insane how something so simple that is, that doesn't really take you very long can put you on the right path, and then it's, and then it's like a snowball effect from there. I mean, I listened to pro tips. I listened to everything I could about omnipotent that's what we were getting ready to do. Listen to switching to a pump doing, you know, like everything that was relevant in that moment for me, everything that I could find, you know, that seemed to be relevant. But I'm telling you, and all of that was fantastic, but I'm telling you even like the ones that are just people's stories, like there's tips in all of them, in some capacity, oh, I don't remember. Remember who it was? Is a really old episode, and I don't know if it was like the roller coaster one. It might have been where you just I mean, I know there was a bump and nudge one, but somebody mentioned that they were paying attention to what their sugar was at the time that they were bolusing for their meal, and that determined how long their Pre Bolus time was going to be. And that was a game changer. Yeah, it completely changed our lives. Now it's to the point he's like, Hey, I'm at 100 and I've been paused for a half hour. Cool. How many minutes should we wait? And he's like, you know, 12 Perfect. Let's do it. And it works. Yeah, it's ridiculous. And he understands it. And it's, no, it's not perfect all the time. But, like, that was a huge, huge deal, because it's not just you need to wait 15 minutes. That's, that's the best practice. That's the best practice. That's a good starting point. But that's not

Scott Benner 1:05:44
always right the case, yeah. And it can change situation to situation to say,

Tammy 1:05:48
and depends on what you're eating, you know, like it, but even so, like, just the basic concept of it is a good is what you're giving people. And then they can go find more details in some of these other episodes and and get in their own experience the ninja level stuff. You know? Yeah, I

Scott Benner 1:06:04
listen. You understand what I mean. So I appreciate that very much. I'm so happy that the podcast was valuable for you and your son, and not your husband, of course, but everybody else. I really think you should get your thyroid looked at. I'm going to tell you right now, like taking your thyroid a thyroid med for a couple of weeks isn't going to make your hair fall out if you don't need it. I hope not, because that's one of my symptoms. Not a doctor, not advice, but like, if you were my kid or my wife, I'd be like, please take that. I think in a couple of weeks, you'll see an alleviation of some of your symptoms. You'll know you're on the right track, and kind of get going from

Tammy 1:06:38
there well, and we'll, we'll find, find out for sure next week. And you're right, if it's the same, maybe I do try it and see what happens. You know, what's the worst? Also,

Scott Benner 1:06:46
your son has hypothyroidism. Your other son has type one diabetes. Your levels are messed up. You have nodules, and you have all the symptoms like ergo, you know, you probably have hypothyroid though, yeah, yeah, yeah. Visa V, I don't know how a doctor doesn't look at that and go, seems like a safe bet. Yeah, yeah. I do know how, because I just listened to your

Tammy 1:07:10
whole story. You have not even heard the whole story. No, even gotten it. We have not gotten into the pump training. And I will make this quick, even though I'm going to fill with rage. So I told them right after that appointment that appointment that we were interested in the pump, and they set us up with a pump class. So that was a couple of weeks later, just to learn about it, we got there, same snarky, snarky nurse is pushing Medtronic, I think, and I don't know why, because I feel like, Is that the one that only compatible with iPhone? I can't remember. There was some reason we couldn't do it, but she was pushing anyway, weird, still talking to us like children, whatever rushed us out and tried to make us have make a decision on this, like, within a half an hour. And again, the three of us, the three parent team, are sitting talking with Devin, and you know, he's like, I just don't want tubes. I really don't like I like the the features on that, but I just want omnipot. Okay, great. So we tell her, put in the prescription. I called the pharmacy two days later to make sure they actually sent it, because at this point I don't trust a word they say, and they're like, oh yeah, we got it, but we still need prior authorization. Great. Message them again. Are you doing this? Four days later? We're working on it. Fantastic. So she sent me a message saying the nurse again, saying that they set up a pump training for us for the end of March and then a follow up in April. No choices, no anything like this is, this is what we set up for you. This is your date. And I'm like, Okay, that's a month away. That seems long. I don't know, though, because again, I'm in that position where I have no idea what's normal, no idea if this is good bad in the middle, like, I don't know. And I'm like, okay, that's really far away. And of course, it happened to fall over spring break, which I wouldn't have a problem with, except for my ex husband was going on vacation for the third time in, I don't know, 12 years. It just so happened, you know what? I mean? Like, of course, it fell on a day that he's on a vacation that he never takes, you know? Like, okay, so we message back say, well, that date's not gonna work. We can't all be there. So do you have something the week before, the week after, you know? And they're like, Nope, nothing else until the end of April. Okay, now we're talking two months, and I'm like, I don't really like that. That's really far away. And at this point, I'm listening to the podcast, I'm learning about the pumps, and I'm like, I really, really want to get this like, I think some of the issues we're having, I think the pump can be helpful, all the options on it, like, I think I know how to fix this, you know, like, I'm getting excited about it, and now I'm getting angry because now they're making me wait two months so we can't do that date. She says, maybe the end of April, but we're not sure yet. We don't know if our trainers available, but I will let you know. And I said, Okay, is there anybody else that can do this? Like any other Omnipod trainers that are available, maybe in a different location, or something like that. Because, again, I don't know. I'm just asking questions, because I have no idea what other options there are. In the meantime, I went on Omnipod site and was like, do you guys do this? Somebody called me within an hour about fell off my chair. I'm like, how did that? Was so fast. That's amazing. And. And they're like, Oh, yeah. Once you get your your pods, you know, the intro kit and everything, you set up account, blah, blah, blah, and it'll say, ask me if you want to set up training. Say, Yes, somebody will call you in a week. Cool. So I'm like, let me go pick up these pods, because they had already put in the prescription. So I'm like, I'm gonna go pick these up. I go to the pharmacy, and they said, No, we don't have them. We don't even have the prescription at this point. I had talked to them the week before, talked to the pharmacy the week before, and they're like, Yeah, we got everything settled, and we're gonna order and it'll be ready for pickup tomorrow. So I get there and they're like, Nope, we never even got it the computer. Like, if you just look at our system, it looks like we have it, but if you open it up, it was an after visit summary. It wasn't an actual prescription. So they sent over the wrong piece of paper for the pharmacy, and the pharmacy sent them a message back and said, this isn't a prescription. Can you send the correct document? They never responded. This is almost a month later, and I'm like, I'm just full of rage, just absolutely full of rage, because I want to get this kit, and I want to set up this training with omnipot, because I want to say, Screw this doctor's office. I'm going to do it myself. Right? I call the doctor's office, of course. And I'm like, can somebody do this? Like, right this second, it's late in the day, the pharmacy said they can get it ordered for tomorrow, if you can get it to them in the next half an hour, can somebody do this? Right? Right now? I'll send a message. I'm like, that's not good enough. Like, I appreciate that. It's not you, the person who answered the phone's fault, but please make this happen. I sent a message to that nurse again. She's like, Oh, we already sent that on February, blah, blah, blah. And I'm like, I'm aware of that. Can you do it again? You said I just told you. You sent them the wrong information. Yeah, didn't take any responsibility for anything. No, I'm sorry. Yep, that's my fault. I'll send it right now. Nothing, just it was already sent to them.

Scott Benner 1:11:38
If you're not hearing the subtext in the conversation. Let me give it to you real quickly. You probably shouldn't expect that most people

Tammy 1:11:47
are going to go, Well, no, that people do what they say, that

Scott Benner 1:11:51
that people are going to do their jobs or do what they say. That's the thing you probably shouldn't expect, and

Tammy 1:11:55
that is, you know, maybe my job does have something to do with this. I have that expectation for people because I have to do that. I have to say what I mean, and me what I say and follow up. Otherwise I don't get anybody to trust me. Yeah, you know, like in the in the work that I do, like these people are not trusting

Scott Benner 1:12:13
Yeah, you have a no job, and nobody's going to be polite to you on the other end of it, I would imagine, oh,

Tammy 1:12:17
yeah, no, right, well, sometimes, but not until I've established that rapport, you know. And how do you do that? By doing what you say you're gonna do, yeah, following up with somebody. It's not, it's really not that difficult. It's really not, even if the person is a jerk, you can still do it, you know. Yeah, it's your job. It's so aggravating. And so they ended up, they did actually send the prescription over, and I did get the pods the next day, and it was pods the next day, and I was very excited about that, and I registered, and I'm like, somebody's gonna call me in a week, and it's gonna be great, and hopefully they can get us in sooner than the end of April, because right now it's early, early March, I think, yeah, at this point. And you know, that's just it was too long in the meantime, she she did get back to me and say that that date at the end of April was good, because up until that point, it was still up in the air, and the next option was August. From April, we had this prescription sent over in the middle of February. You're telling me we can't get this up and running until August? It's insane. Yeah, that was too much for me. I'm like, There's no way. And I think I even posted on on the Facebook page and asked if that was normal, you know, like, is a couple of months normal? Or I at least did that somewhere. I don't remember, but some people were like, No, I got it, like, a week. And other people are like, yeah, it was like, three months. And I was like, okay, so I guess this is kind of standard, but really not okay

Scott Benner 1:13:34
with this. But the rule is, there's no rule, and, yeah, you know, and that you're going to get the amount of effort from the people that they're willing to put into it, you don't know who your office is, they're going to settle up to you, like, this is normal. Like, no, this takes six months, which might mean it actually takes six months. And it might just mean, like, we'll get to it. We get to it. Who knows? Like, that's why you just keep pushing until someone does it

Tammy 1:13:58
right and, and that's why I went looking for help from Omnipod, specifically. And so nobody calls me from there. And I'm like, what's going on? I call them, and they're like, oh, yeah, I see you. Put in the request. Let me I'll send a message to your you know, the rep in your area, blah, blah, blah, she'll call you. Great. She doesn't call, doesn't call. I'll give it a couple more days. Okay? I will. And then I was like, Okay, I'm gonna call again. And so she ends up emailing me right after that and saying, you already have an appointment, a training, you know, appointment scheduled for the end of March. And I was like, No, I don't that was the one they originally told me about that they scheduled me for. But then we said, No, we can't do it. Can we have another date? They had still left that on the books. They never took it off after we said, No, we can't do that in their system. The Omnipod trainer never called me because she's like, she already has an appointment for training scheduled. She doesn't need me. I email her back. I'm like, can you please just call me? Like, please, just call me. This is too long of a story to type in an email. Like, I don't even know what to say, so I tell her when she does call. I tell her that appointment was never actually scheduled, you know, we never confirmed that, that that was never an option. And she's like, okay, so I don't have good news for you. Your doctor's office requires the training to be done in their office. It's like, why? And she's like, well, I don't know if some people are like that. She's like, most doctors don't most doctors are have their Omnipod, you know, rep in their area, or whatever, and they will just meet you at the library, or just meet you here, whatever works for you.

Scott Benner 1:15:27
Did you figure out? Why is it? Are they billing you for it? No,

Tammy 1:15:31
no, they're not. I don't Well, I don't know if that I doubt there's a co pay for that. I don't know. Maybe there is, but we never did it. So I said, Are you freaking kidding me? They're requiring us to go in there, but they can't get us in until August, right? What kind of bullshit is this? You're delaying my kids treatment because you want to be controlling, right? Yeah, and you have to have it in the office. Absolutely. It has to have something to do with money. They're getting kickbacks from something I don't

Scott Benner 1:16:00
know. That made me wonder, why? Like, why? Yeah, what is it that they want? Because if some offices don't care, and then OmniPods probably telling you, like, Look, you could start whenever you want. This we have on the there's online training for Omnipod five, right, right. Yeah, right. So I really don't know. I don't know why everybody sucks, but it really does feel like it sometimes

Tammy 1:16:22
really frustrating. And in this this poor Omnipod rep, she was so nice. She was absolutely one of she went to bat for us. She said, I'll message them and see if they're willing to make an exception because of everything you've gone through so far. Nice. I was like, you're awesome. And she did. And she sent me, she sent me the screenshot of what the lady said back to her, and it was awful. She It was awful. It's God. Oh my god. The things that she said to me, like when I asked her, and I thought I was being nice when I asked her if there was anybody else that could do this training that would have a better availability, or, you know, something, she snuck right back at me, right back at me, telling me he was just diagnosed in January. Most people have to wait six months. We're already shoving him into a very full schedule. There are a lot of moving parts here. Like the doctor needs to have an open office that's available for two hours. It has it has to be on her schedule, and you have to have a follow up appointment and two hours. It didn't take two hours, but that's fine if they think they need that, then, okay, yes, there's a lot of moving parts there, so you're overbooked, which I completely understand. I am not upset with any endo office for being overbooked, well, not necessarily overbooked, but for being busy, for not being able to schedule me. You know, next week, I understand that there's not enough of them. That does not bother me, but you're overbooking and not letting people get the training somewhere else. How do you not see that that's a problem, right? This person wants to get on a pump, and you're making them wait two months because you're overbooked. Yeah, do better. Not a reason. Do

Scott Benner 1:17:46
better or let me go somewhere else. What do you like? Why are you holding me hostage and doing a bad job for me? There has

Tammy 1:17:51
to be a reason. You know, there's got to be something there. And I, I mean, I asked omnipotent, she's like, I really don't know. I think she said, you know, some people like to be there as a resource, like, well, the trainer is a resource. But, okay, yeah, there's got to be some controlling aspect, you know. They have to be in it somehow, you know. And that's 100% the vibe I got off of this lady to begin with,

Scott Benner 1:18:10
yeah, but let me ask you this, though, since he's had on the apod five, how many times has your doctor's office been a resource for it?

Unknown Speaker 1:18:18
Um,

Scott Benner 1:18:21
it's a great question. Yeah, I'm gonna guess the answer is not often. No.

Tammy 1:18:24
Like, I'm trying to figure out if it's like one or two sometimes, yeah, in why

Scott Benner 1:18:29
do I need you here? Also, aren't you the person who changed all the settings and made my kid low? Like, it feels like you might not know what you're talking about?

Tammy 1:18:35
Yeah? Yeah, it's crazy. So she, she basically just said, you know that sometimes they just want to be there for their own purposes. Yeah, it's 100% nonsense. Like, it feels like you're putting, you know, whatever profit you're getting out of this ahead of what your patients actually need. Like, what kind of patient care is this?

Scott Benner 1:18:56
I don't know if that's the case or not, but I can tell you this. I'm gonna leave you on this thought, learn how to change your own settings. It's one of the best things you're going to do for yourself if you have type one diabetes. Yeah, I mean people that wait run through all the problems that you've had. Like, you keep matching, waiting three months, and then the person making you low, and then going, Oh, I don't know what happened, put it back. And then, what? Three more months, then we do it again. Like, you need to know how to adjust your insulin. It's timing an amount. You need to know how to time it. You need to know how to, like, get your settings set up so that you're using the correct amount of basal, of correction, insulin and what's covering your carbs, insulin to carb ratio, insulin sensitivity, factor basal. You need to be in control of that stuff, yeah, because they're going to shift at times, and you're going to need to know how to know how to shift with it if you want to have a good time with type one diabetes or a successful outcome, that's one of your goals. Is to learn how to adjust your own insulin. My opinion, also, I'm not a doctor. This is not advice and etc,

Tammy 1:19:53
but you'd get worse advice from the doctor anyway. I mean,

Scott Benner 1:19:55
that's your opinion. Tammy, there are plenty of people, I'm sure we. Could find people who don't like me who would say that I'm an idiot. So don't worry, it's the internet. I'm pretty sure I called myself an idiot at some point during a number of times you did. I appreciate it. Actually, I thought it was awesome, because I definitely don't know everything,

Tammy 1:20:11
but I can tell you, these people are jerks. That part I know after talking to the Omni Omnipod rep, who's just a saint, you know she's going to bad person, and she's, well, she didn't like me requesting you to go to a different location or to do something different. She basically told me to write off. So I, at that point, I Well, and it was like a while before, I think it might have been after that very first visit with the 30 year old son that I messaged my pediatrician and said, Hey, we're considering changing endos. Do you have any recommendations? And she gives me a name, and I'm like, Okay, I'll keep that in mind at that point. I'm like, I don't want to delay getting a pump. And I know how long it takes to get in with specialists as a as a new patient and stuff like that. So I'm like, I don't want to delay it. Let's just get the pump going, and then we'll switch. Let's just get through it, you know,

Scott Benner 1:20:57
yeah, look at you learning how to play the game. I'm kicking myself

Tammy 1:21:01
for that. Now Scott was. I called her the new Endo, and I said, right after all this stuff with her barking back at the Omnipod rep, now we can't do that, and it's ridiculous, and the earliest available is August if she wants to go somewhere else. And the family's already committed to this, even though we hadn't whatever either way. So I said, I'm done with this. So I called the other doctor's office, and I said, looking to switch. This is who we currently have. I, you know, looking to get a new patient appointment. What do you need in order to make this happen? Like, do you need, you know, anything from me, or can we just set up an appointment? She's like, Oh, no, you can just set up an appointment. How's Monday? Like, next Monday? And I'm like, what? Yep, that that day works. 100% that day works. Let me ask you something up something else does. Does this doctor require pump training to be in the office, or can we go somewhere else? Oh, no, she doesn't care. You can go wherever you want. Holy Jesus. Are you serious? All right, yep, I'm sold. I'm absolutely sold. You walk into this office, then she walks in, and I see her tubes hanging out of her pocket. And I'm like, oh my god, this is the best day of my life. And she starts giving Dev and for wanton omnipot. And she's like, you don't want tea slim, like, I have, like, you see these awesome tubes? And he go, he just lit up. He go. He just looks at her eyes, like, you're diabetic. And she goes, Yeah. And he's like, Oh my God. And I said, this is the best day of my life. I'm really sorry that you're diabetic, but this is literally the best day of my life. Thank you for having diabetes. Yeah, God yes. I mean, it sounds so awful, but I, you know, I'm like, this is exactly what. She was awesome. She was just awesome. You know, was joking with him right away. And you know, he was, he was giving himself shots before he even left the hospital. You know, the kid that's scared of needles. He couldn't figure out the best way to do a shot in his arm. He was doing shots everywhere else, but he couldn't, you know, get the right angle on the arm. She spends four seconds with him and shows him how to do it. And he's like, Yep, I got it. I'm done. I'm doing it all by myself. Now that was literally the only thing he wasn't doing for himself, was a shot in the arm. He does everything else. And I'm like, four seconds with this person, and he's completely independent, like, it was insane. It was absolutely insane. So she's like, here's the card for my Omnipod trainer. Just text her all right. Texted her, and five or six days later, she's like, I have availability on this day. Can you do this day? Yep. So in the matter of a week and a couple of days, we have a new doctor, and we have omnipot attached to the to his body, where it would have taken from January to August to make that happen. Wow. I'm just dumbfounded. Just absolutely like, this is how it was supposed to be. How did I get such an awful, awful experience to start with. Why did I have to go through that? You know, now I'm getting angry, you know, like, again, weight lifted, though, huge. Weight lifted. Literally, we're done. We're good. Like, Devin was even like, do you think we should send her messages when we have questions? Because we stopped doing it with the other doctor. By this point, we're doing everything ourselves. We're changing stuff. We're doing, we're doing it all. And I'm like, we can if you want to. He's like, all right, like, it was like, a switch flipped, and now we trust our doctor again. Awesome. That's awesome. It's insane, absolutely insane.

Scott Benner 1:24:08
Congratulations. Says wicked. I have to stop this because I'm hungry. I don't want to, I don't want to say there's any other reason I really am just hungry. That's okay. But I appreciate you doing this so much and for sharing those stories and being so honest, and I think probably explaining a situation that a lot of people say that happened to me too. So, yeah, it's good for them to hear you talk about

Tammy 1:24:31
it. The thing to really point out, I think, for anybody that's maybe currently in this situation, they're not sure, is this normal? Is this how they're supposed to be? Is this how they're supposed to talk to me? Is this how long everything takes? Is this ask, good Lord, don't sit there and just let it happen. Ask, push, you know, like, I know everybody says, advocate for yourself, advocate for your kids, and do what you gotta do. Like, not kidding, though, like, it's a thing because we don't know when you're right there at the beginning, and we're brand new. We don't know. How it's supposed to be. Don't just accept it. If it doesn't feel right, if it doesn't look right, if you're not sure like, don't just accept it. Ask the questions. It's it's worth it, 100% worth it, because we went, he got on Omnipod in April, 1 week of April. At that point, he was 14, point something, a, 1c, in January, when he got diagnosed, was eight at the appointment, where, where we set up the with the new doctor. He was down to eight. First appointment after that, three months after that, was at 6.2 and then we just went to the end, oh, last week. What week is this? Yeah, right before Thanksgiving. Thank God it was before Thanksgiving, but we went and he was at 5.7 Wow, good for you. I mean, it was, it was kind of ridiculous. Devin predicted that. Like, we joke we that's the other thing you have to do with this. You have to laugh at it. Laugh at the thing that sucks, because it makes it better. Me and Me and Devin are jokesters like that. We're we kind of just, like, make up names for things. Like his Lancer was stabby stab like, I mean, you know what? I mean, it's just stupid stuff that we just laugh at. Like, you have to laugh at it to make it not suck so much. But we joke around whenever we went, what do you think everyone see is going to be? Let's, let's bet on it. You know, I won last time and he won this time because he's like, what's normal? And I'm like, I think it's under 5.7 is normal. He's like, it's going to be 5.7 and I was like, All right, I don't think it is. I think it went down a little bit, but I don't think it went down that much. He was dead on, and I about fell off the chair, and I gave him a high five and said, Yeah. And I said, Holy. And I was like, oh my god, I'm so sorry. I didn't realize I was swearing with the doctor standing in front of me. And she's like, that's okay. I've heard the word before, but it was like, you know, it was oh my god, how. How did we do this? How? But, you know, that's awesome. Imagine if we didn't get it till August. Imagine if I never found the podcast. Imagine what we would be doing. And I'm sorry you're hungry. I'm going to stop talking.

Scott Benner 1:26:51
No, no, I appreciate, I appreciate you going over it and being passionate about it so people can hear and and think I could probably do that myself, for me, yeah, for my kid, you know, it, it's very doable. It just, it's a an amount of information you need to hear. You need to have some experience with it over and over again till it starts to make sense. You have to have good tools. And, you know, from there an A, 1c, is kind of where you put it, you know, once you have the Yeah, the knowledge, you know, yeah,

Tammy 1:27:18
yeah. And I think knowledge is key. I mean, I mean, there's a lot of people, I think I posted on on the page about omnipotent I kept hearing how people were hating it, and it just wasn't working, and it wasn't for them, and we're having such great success. I wanted to make sure everybody knew, like, it's possible, like, don't, don't count it out, don't, don't assume it's it's going to be a bad experience. But you have to learn it. You have to learn what it does. You have to learn what your role is as the user.

Scott Benner 1:27:43
It's a very popular device, and everybody does. You're gonna, you're gonna hear the bad a lot

Tammy 1:27:47
more than the good, right? And that's what I was trying to do, was put the good out there. Like, hey, don't forget, this thing is awesome, you know? And it can be, but it takes work, you know? It's not set it and forget it. Nothing is, yeah, no,

Scott Benner 1:27:57
no, listen, you could find, you could find a group of people having a complaint about a Medtronic pump out a Medtronic pump out a tandem pump out of the I Love, everyone's gonna I mean, you just heard all the things that go into making it work, right? You think everyone out there has great doctors, and they don't, and they don't realize it's that they're not getting good information. They just, in the end, they go, This thing doesn't work. That's, you know, what they say. Like, nobody, yeah,

Tammy 1:28:19
just like I was saying they're changing settings, but they're not explaining to me why. If they explain to me why, then maybe I could figure out how to change them myself when the same scenario pops up, you know, but if you're not getting that information, then you don't know what to do, and you think the pump is just going to fix it for you. And it's, it's pretty smart, but it's not that smart, you know, there's, there's still a lot of work that has to go into it, and it can absolutely be done. And if it's not right for you, it's not right for you. You know, whatever pump it is, you know, there's something that you work with better than go for it, but don't think for a second that you can't get there. I agree, and I think that's part of what I really want parents to know is, again, I'm brand new, and I'm an idiot. I don't know everything, but I like I told you I was in a really, really, really awful place. And I can honestly, I can only speak for like this age. I don't know, you know, what you went through with art and being two years old and you know, or toddlers, or, you know, younger than 10, or you know, older, but like in this age group, I think you'll be very, very surprised what they're capable of. And maybe that's true for younger kids too. It seems to be people are like, When? When do I stop being mad about this? When do I stop freaking out? When do I stop all of these awful, awful emotions? What I think is that at some point you're going to be able to see it. Maybe, maybe you can't right away, but at some point you're going to see just what they're doing and what they're capable of, and you're going to be so fcking proud of them, that you're not going to have room for the rest of it. You're not going to have room for the anger and the sadness, and it's still there, but it's it's not going to be in the forefront. You're going to watch your kid do stuff that you never thought in a million years you would be capable of doing that day in the hospital, or that day you came home and you're just sobbing together. You. I watched my kid does a lot of stuff. He plays baseball. He was awful, like, not an awful player, but he was just he would throw his bat. He was a terrible teammate. He was had all these issues. First semester in when he started junior high, he got suspended three times for hitting kids for no freaking reason. He was having a lot of trouble, and he always begged me, like, can I be on the all star team? No, show me you deserve to be like, I'm sorry I forgot to mention I coach his team. So he would ask me, you know, like, oh, I want to be on the all star team. No, dude, you got to prove it. This summer, our first season after being diagnosed, he was a leader. He showed up and he was a leader for the rest of the kids, and he did really well. He has best season ever. It was like, a completely different kid. It was mind blowing. And I'm like, this absolutely has something to do with it, you know, it has something to do with, you know, like, he was a jerk and got suspended because his blood sugar was high for so long, and we didn't know it. And now he's turned it around. Now he's awesome, and he's like, a good teammate. He's not throwing his bad he's not getting mad at the umps anymore. He's not, you know, like he he made the all star team because he deserved it, not because he was my kid. And the same thing, you know, he just started wrestling this year. I've gotten calls from school that at wrestling practice, he's, you know, stopping the the younger kids from goofing around when they shouldn't be. I've got teachers calling me telling me that they're proud of my kid instead of the other way around. Yeah? Like, there's so much stuff that you don't realize is related. Yeah, no, I know it's it's astounding. It's absolutely astounding. And I every single thing that he does, I'm like, how, how are you doing this? Like, the pride is just insane. It really is, because I'm

Scott Benner 1:31:39
glad for it, yeah, and I appreciate you mention it too, the thyroid stuff too, like, anything that can change your chemistry and your tolerance. And you know what I mean? Like, it changes your personality too, sometimes, yeah, yeah. And

Tammy 1:31:53
I don't, I don't know how long he was having, he was obviously having trouble, you know, the few months leading up to diagnosis, for sure, but he hasn't been suspended from school, a sense, you know, he hasn't had any issues like that. And it's, I wonder how long that was going on, and I'll never know. And that's fine, you know, I've come to terms with the fact that I'll never know the reasons behind everything, right? It's incredible the turnaround that can happen and how those things come to the forefront in this situation to help those awful emotions subside a little bit. You know, no, they don't ever go away. Of course not. But I've seen a lot of a lot of posts like that lately, and I try to be helpful, but I think it's important to to understand that it absolutely sucks. Yeah, I appreciate it. I do. There is some some light out there in the ugly cloud of doom. We actually had an UMP who was type one, so when we had an issue with his pump falling off, and the other coach started barking about, well, what's taking so long? What's delayed game? We're gonna have to, you know, push the time back in. The upstart yelling at him, said, I got it covered. Don't worry about it.

Scott Benner 1:32:51
Calm down for five seconds. We're all gonna be okay. Yeah. I mean, listen, there's a lot of lot of crazy people at baseball games, that's for sure.

Tammy 1:32:57
Well, and yeah, and this coach had been a jerk for years, but it was amazing that the UMP was, I mean, my son was just what you're type one too. Like, this UMP we've known for years, you know, yeah, and just now found out he was type one because he's like, Hey, what's going on? I'm like, Oh, he's, he's diabetic. His pump fell off. Oh, really, he's on the Omnipotent he's like, I'm type one too. I'm like, Oh, Jesus. And then there was a parent on the other team at that same game that walked up to me after and was like, I'm really sorry that our coach was being a jerk. And he's like, you know, my my wife, is type one too. I'm like, Oh my god. How did we How did we all gather at one game?

Scott Benner 1:33:29
Like, also, we should stop drinking the water here, apparently, because something might be going like,

Tammy 1:33:33
I don't know. I just, you know, I know it's not that common, you know. So, like, having three type ones, that one, you know, 13 and under baseball game seemed really odd to me. Yeah, I hear you. It was. It's just, it's a community that we never wanted, but it's a great one. And I think, I think there's a lot of support here. Our nurse set me up with one of the other kids moms that was type one in our school, and we become good friends, and she was a huge support. And I think anybody that's in that way, anybody that's sitting there just devastated and can't crawl out of it, there's stuff out

Scott Benner 1:34:07
there if you can't meet people on in person. You know, the community that I have on Facebook is a great place to meet people, Yep, yeah, but it definitely helps to talk to people who understand the situation that you're in a million, yeah,

Tammy 1:34:22
it was a huge benefit to talk to a couple of parents that are in our school, that know our nurse, that know our teachers. You know what I mean? Like just having something like that, and if you don't have something like that, then that that really sucks. But there's, there's somebody out there, yeah, you know that can, that can help with that? For sure.

Scott Benner 1:34:38
It really is valuable. All right, Tammy, you're terrific. I thank you so much. Can you hold on one second for me? Yeah, thank you. Thank you. Hold on one second.

The podcast you just enjoyed was sponsored by tandem diabetes care. I. Learn more about tandems, newest automated insulin delivery system, tandem Moby with control iq plus technology at tandem diabetes.com/juice box. There are links in the show notes and links at Juicebox Podcast com. I'd like to thank the ever since 365 for sponsoring this episode of The Juicebox Podcast, and remind you that if you want the only sensor that gets inserted once a year and not every 14 days, you want the ever since CGM, ever since cgm.com/juice, box, one year, one CGM, I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.

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