#1482 I Be Only One
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Despite a rocky start, she quickly taught herself and is thriving as a sign language interpreter—we even explored adding sign language to the podcast.
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Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.
This is Michael as she was diagnosed at 22 years old. She's 24 now. She had a bit of a rocky diagnosis, but came along pretty quickly, taught herself a bunch is doing great. She is a sign language interpreter. We talked about her maybe doing sign language for the podcast, which is awesome. This is her story. I hope you enjoy it. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your 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 Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com AG, one 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/juice, box to get this offer. Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa. This is the way t 1d exchange.org/juice box. It should not take you more than about 10 minutes. This episode of the juice box podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management. Imagine fewer worries about mis Bolus is or miscalculated carbs thanks to meal detection technology and automatic correction doses, learn more and get started today at Medtronic diabetes.com/juice box. I'm having an on body vibe alert. This episode of the juice box podcast is sponsored by ever since 365 the only one year where CGM, that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox
Michaela 2:38
Hello. My name is Michaela, and I was diagnosed with type one diabetes just two years ago, actually, and you're how old now I'm 2424
Scott Benner 2:44
Okay, how did you figure out you had type one it
Speaker 1 2:48
was a six month process of me ignoring all of the symptoms, but it was April of 2022 that I got COVID, And it was not any real severe COVID symptoms. But what happened for me? It was just a extremely high fever for multiple days, like, I think it was about 104 and I could barely get it to go under 101 for three days. So that happened, and then I, you know, was fine, and I carried on with my life. I graduated in May of 22 and I thought life was grand. But in that process, I was slowly losing weight, and it was a slow process at first, but it, I noticed it. I just thought it was because I was being careful. I was like, trying to work out I'm graduating soon. I wanted to look nice for graduation, and I always worked out anyway. I always tried to eat healthy, but I was just being a little bit more cautious. And so I thought, oh, that's what's doing it. And then summer came around, and I'm a surfer, so I surf a ton, and I was surfing a lot and losing more weight, drinking a lot of water, but I thought, Oh, I drink more water, I lose weight. And I, you know, I'm surfing a lot, so I'm losing weight. Kind of fast forward, I wound up going to the doctor, not because I was losing weight, not because of all the other symptoms I had, but because I wound up with oral thrush, which is something that babies get, but it's like that infection in your mouth, where it like causes a bunch of sores and everything. You're not
Scott Benner 4:09
the first person to mention that before being diagnosed, by the way, yeah,
Speaker 1 4:13
I think I've heard a few people mention it on here, but that's what actually got me to go to the doctor and was like, Hey, I'm concerned about my mouth and nothing else, because
Scott Benner 4:21
it was my mouth painful and unpleasant. You're like, well, this I'm not living with right? Yeah. And
Speaker 1 4:26
I was, I was just like, I don't know what's going on. At first. I was like, mouth cancer. How would I get that? Like, I'm so confused. So like, not what it was.
Scott Benner 4:34
My elbow hurts for two days, and I'll go to my wife. I'm like, I definitely have cancer in my elbow. And she's like, I don't think that's a thing that happens to people. And I was like, All right, well, my old Well, my elbow hurts for sure. Yeah, right. So you go to what kind of a doctor? Well,
Speaker 1 4:46
my primary care is always busy, and I don't love my primary care doctor. I've just kind of kept her because I don't have to see her that much.
Scott Benner 4:54
I would love it if she could know that that's like, it just must be so, like, crushing to hear something like that. But. Anyway,
Speaker 1 5:00
I think I've seen her once or twice since I became non pediatric, so I was every other time it's like, sometimes she's great, and then other times I'm like, I don't I didn't really get much this day, so I
Scott Benner 5:11
gotta stop you. You and I are gonna get along so well. You just said non pediatric for being an adult. That was the one you're like, Oh. You're like, when I became non pediatric and I was, like, an adult, yeah, that's awesome, yeah. So you've got this woman in your back pocket in case something goes desperately wrong, yes. And what
Speaker 1 5:33
else, I guess I should preface though, whenever I see the doctor, I do have hypothyroidism that I was born with, I go to see my endo a lot, so anytime I need lab work, it's her. So that's why I don't see my primary care that often. Oh, Michaela,
Scott Benner 5:44
we're gonna pivot for a second. Okay. How did they figure out a newborn has hypothyroidism?
Speaker 1 5:49
They just ran a bunch of blood work, and at five days old, they found out. Well, I don't I think that's it might have been earlier than that, but basically, from the time I was born, they said, Yeah, her thyroid is not working right? It was under developed in your womb, and so it's just small, and it's not going to provide all that she needs. So here's medication. She'll take it every day. And so I was on thyroid medication since I was five days
Scott Benner 6:10
old. No kidding, yeah. Have you ever had it checked? Like, is it Hashimotos, or is it just hypothyroidism, or is it like something different?
Speaker 1 6:18
I've never had it checked. I believe it's not Hashimotos unless that appeared, but I don't know that. I would know because I already have hypothyroidism, so I don't think I'd really tell a difference. I've never had it checked, though. I did get my thyroid ultrasound done not too long ago, and they just said, yeah, it's all there. It's just really small. It just doesn't it's not big enough to produce enough of the hormone. So I this
Scott Benner 6:40
is going to be, I hope this is important to people, but I think I feel like I need to know this. So like, if you are born, hold on a second, I'm going to ask our friend, you know what I mean? Oh yes, if you are born with an undersized thyroid, what is that called? So that gives you congenital hypothyroidism, or thyroid hypopalocy refers to an undeveloped, small thyroid gland. Okay, could this person later get Hashimotos? Because I don't see why you couldn't be born with because, yeah, because, right. It says, Yes, someone with undersized thyroid or congenital hypothyroidism could later develop Hashimoto thyroiditis. I'm sorry. I don't know why I'm so excited by stuff like this, but I guess I'm the right person to make this podcast. It's interesting, because if you were born with a congenital issue and developed 22 years later an autoimmune issue, would it matter if you contract Hashi motors, or would you never even know? I feel like
Speaker 1 7:46
I would never know my thyroid. I feel like it's constantly changing anyway, really as yeah, as I got older, it kind of slowed down. But I do tend to change my medication probably every two years. Sometimes amounts
Scott Benner 7:58
you go up, yeah, and do you take just t4 do you take t4 t3 I
Speaker 1 8:03
just do t4 I did try t3 right after I got COVID, and I thought it was giving me blurred vision, so I stopped it. And I think that was the diabetes, but I haven't gone back since.
Scott Benner 8:15
Do you feel like you're not making teeth? You take the t4 but it needs to get translated to t3 some people like that process doesn't work as well for them. But like, what made you try the t3 were you like, overly tired? Couldn't get rested, but your TSH was good. When you think of a CGM and all the good that it brings in your life is the first thing you think about. I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox Podcast is sponsored by the ever since 365 the only CGM that you only have to put on once a year. And the only CGM that won't give you any of those problems, the Eversense 365 is the only one year CGM designed to minimize the vice frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping, you can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at Eversense cgm.com/juicebox, one year one CGM. Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system, the mini Med, 780 G automated insulin delivery system, anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary the C. 780 G works around the clock so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep, they felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox
Speaker 1 10:39
Yes, yes. And my t3 was a little bit lower, not too low, but lower. And ever since I was a kid, my mom always she was like her t3 is off. She's not right. She needs a higher dosage to fix her t3 and as a kid, I never did t3 and t4 but she knew that the level of t3 was what affected my mood, my personality and everything. And so she would get my endocrinologist at that time to raise my level just a little bit, or my dosage a little bit so that it would raise my t3 and that worked just fine. I never had to take a supplement. But when I got to be older, that wouldn't work. And my endo was like, I can't raise it anymore, or you'll be too high. So let's try a t3 supplement instead. But I wound up feeling like I had blurred vision. And so I said, Is this a symptom of this medication? Should I stop? She goes, Yes, just stop it. Tell me how you feel. If we need to readjust, we'll figure it out. And I felt fine, and my blue, my blurred vision went away. So I thought that was what it was, but I'm assuming it probably wasn't. So you
Scott Benner 11:36
have cytome in the house, and you're thinking, maybe I'll try it again or no, I've thought
Speaker 1 11:43
about it, I just haven't really noticed anything that I'm like, needing it for right now. Wouldn't
Scott Benner 11:49
then, like, you're not losing hair, you're not super tired, even though you sleep stuff like that, right? Oh, cool. Then maybe you're good, yeah? Awesome, awesome. Okay, I appreciate you taking that left turn with me, yeah. So we've got thrush and we're going to the doctor, so let's go back to that.
Speaker 1 12:05
Yeah. So I went to the doctor in November. So it took me from April to November to do something about any of my symptoms. I wound up getting lab work. At the beginning of November, got my lab work back, and he ran a full panel because I had told him, like, you know, I've also been losing a lot of weight, like, I think it's just because I'm drinking more water, but can we check my thyroid and anything else that you think needs to be checked? Oh, backtrack a little bit when I said that I didn't see my primary care doctor. I just called my insurance and said, Can you just get me in with any doctor that's available? Tomorrow,
Scott Benner 12:38
I'll take anyone available. Hey, can I ask you a question? How many people have you seen lose weight just drinking water?
Speaker 1 12:44
Not many. I'm going to be honest, I just liked being able to eat whatever I want, stay skinny and lose weight, and I was living my best life. I honestly didn't think I felt that bad, and I was honestly that put my mood so high that I ignored everything else and thought life was grand. How much did you lose? About 30 pounds on how tall 520 my
Scott Benner 13:06
gosh. You must have been like, This is it. I'm finally going to be a runway model.
Speaker 1 13:10
I was to the point where I was like, this is getting a little concerning. Oh, at the end, at the end, because I had people telling me that they think that I'm looking a little too thin. And I was like, I can't do anything about it. Like, this is just how my body is.
Scott Benner 13:24
Now. I'm just a thin person, and you're jealous. And
Speaker 1 13:28
they were very kind about it. It was like, loved ones and family. But I was like, I don't know what to say. And I've always been a pretty muscular person, especially in my arms, I tend to gain muscle really easily, and I lost all my muscle everywhere. And I thought that was also normal, because that comes with weight loss, obviously,
Scott Benner 13:44
wow. And you're young too, and you know what I mean? Like, not that young people don't understand you actually sound incredibly mature for 24 I don't know if you know that or not. People tell you that I think. No, no, mature. Like, thoughtful, oh, okay, not like you're gonna make tea and sit around and watch the programs with me or anything like that. But do you find yourself to be that way? Yeah,
Speaker 1 14:03
I do. I do tend to find myself gravitating towards more like mature relationships, too.
Scott Benner 14:08
Yeah. No, I hear it in your voice. I don't know how that's the thing I can hear in your voice, but I think I do. You go to the DR du jour and they run a bunch of labs and tell me where that goes from there.
Speaker 1 14:20
So the lab work comes back, and they run a full panel. And so, like, everything was just like, high through the roof, looking bad, like I was ill, dying, etc. And so I was more concerned about my cholesterol and triglycerides, because they were, like, ridiculously high. And I was like, Oh my gosh, I'm gonna have a heart attack. I'm gonna die. Like, I was like, I was like, What is wrong with me? I was like, I'm so thin now. Like, how could anything be wrong? That's I just equated thinness to the health. And so I did see the A, 1c, and I knew it was high, but I was like, oh, 17.4 I don't know what that means. I'm sure it's not that bad. I'll just cut back on the sugar. Like I had no idea. What that meant. So I was more concerned about the cholesterol, and because I had him test my thyroid, my endocrinologist, who she doesn't specialize in diabetes, really, she has, she worked someone who does. She's a nurse practitioner, and I don't know how to really relate that, but she's knowledgeable to the extent she has to be about diabetes, but not in this in to the extent where she like takes on diabetic patients to manage their diabetes. And so she was looking at my my lab results, to look at my thyroid. And she said, your thyroid looks good, but all of your other lab work is concerning. Let's redo it. And so I said, Okay, I did notice that my thyroid was a little bit lower, like it was not on the low end, but it was a little bit lower than what I wanted. And she said, I asked her, Can this cause all of my other work to be this high, like, Can my thyroid being low cause this to mess up the rest of my lab work? She goes, yes, but not to that extent. So we redid it, and like, two days later, it was a 16.9 so not much had changed, although I was surprised. It went down that much in two days, and then I wound up not knowing what that meant. When I got the lab work back, I got a call from my insurance saying, Hi, your insulin is ready for pickup.
Scott Benner 16:05
Got the wrong person. I'm Michael, 22 years old, by the way, I don't watch programs and I don't need insulin. Did you hang up on them? Or do I mean, how does that? That's a weird call to get. No, yeah.
Speaker 1 16:17
Well, I because I saw my lab work, I knew what it was, and I the doctor, Google told me this wasn't good, but I didn't know exactly what it meant. And I pretty much knew from what I read that it was going to be type one diabetes, but I really didn't know for sure, and I was holding on to every hope I had that it wasn't, yeah,
Scott Benner 16:34
you're like, this might be from surfing. I'm just gonna wait. Yeah, who knows? I'm gonna take a little side note here. So high cholesterol, high triglycerides, in undiagnosed diabetes, is primarily due to metabolic disturbances caused by insulin resistance or insulin deficiency. I could tell you more about it, but, I mean, I think people would generally be bored. There's roles in like lipid metabolism that lead to these all different kinds of issues, but it's actually like a known thing that has a name. It's often referred to as diabetic dyslipidemia. I think I got that right. It's a hallmark, it says, of increased blood sugars out of control. Like, let me, let me read the breakdown here for you at the end, lipid abnormalities can occur if the condition is undiagnosed or not well controlled. So if you can see this with undiagnosed diabetes or diabetes, that's just, you know, not getting the insulin that it needs. Interesting, I brought that up and kind of stretched it out, because I don't know that anybody's ever said that before, and I thought it was worth making the point here. Yeah,
Speaker 1 17:35
I definitely assume I got my lab work done after that, and everything went back to normal. So I was like, Oh, that was definitely the uncontrolled diabetes, but, but
Scott Benner 17:42
isn't it interesting, though? Like, because what it's making me think is, if I'm a person with type one who has, you know, some of these lab values, you know, they're just going to medicate it, right? Like, they're not going to say to you, like, hey, what if we worked on, you know, giving you a lower, more stable, a 1c and less variability. Like, they're just gonna say, Oh, you've got cholesterol. Let's take cholesterol medicine. If you have, you know, triglycerides, let's do this. No, it's that's worth people hearing. I think. Okay, so the insulin ferries on the phone. Then what happens?
Speaker 1 18:12
I say, I'm sorry. What? I was very confused, and I was at work, so I had just stepped out of the office to take the phone call, because I knew I was expecting something about my lab work, and so when this random lady who I've never spoken with told me the insulin was ready for pickup, I said, who prescribed that? She gave me a doctor's name I've never heard of. I said, Who's that? She goes, Oh, they're taking over for your primary care while they're on vacation. I said, I've never met with this doctor, though. How do they know what insulin I need? I didn't even know I needed insulin. I said, nobody ever told me anything. And she goes, Oh, you not met this doctor? I said, No. She goes, Oh, then don't pick it up. Definitely wait and we'll schedule you an appointment with a nurse practitioner who will give you the insulin instead. And I was like, Well, okay, when can I get that scheduled? Yeah, right. Mind you, this is November 22 she goes. Our first availability is December 16,
Scott Benner 19:02
but your a 1c 16 ish, it's 17.4
Speaker 1 19:05
or 16.9 depending on which lab work you refer to.
Scott Benner 19:09
Any chance this doctor's name was Dr Bombay, no, no, it was a
Unknown Speaker 19:13
receptionist who had called me,
Scott Benner 19:14
Michaela. That's a joke you're never gonna get but older people right now are cracking up, just so you know.
Speaker 1 19:19
Oh, okay, yeah, that went way over my oh no, it went over
Scott Benner 19:23
your head. By I'm guessing. Let me see 70s, 80s, 90s, maybe 65 years. Gotcha. But you might want to go watch bewitched sometime on one of the television just that run the old TV shows. This is crazy. Like, did you ever figure out, like, why a random doctor sent an insulin prescription. I
Speaker 1 19:43
think they just saw, Oh, hey, her a one sees high she needs insulin. Here you go. And she just, or he, she, I don't know, sent a random insulin prescription in, because supposedly, my primary care was supposed to do that because she was on vacation. He took over, or she took over.
Scott Benner 19:57
I think it's dumb luck. We're all alive after I hear stories. Like this. Every time somebody says something like that, I'm like, Oh, my God, this is all just like, it's just luck. The whole thing that the lights go on, that anything happens like, my god, yeah. Okay, so I'm assuming you push harder than you know, we can't see you till whenever. Yeah.
Speaker 1 20:15
Well, I said, Okay, I'll take the appointment. But I said, What am I supposed to do in the meantime, I know that if someone's insulin dependent, they need insulin or they could die. And like, I questioned it to her, like, is this true? And she goes, yeah, just since you don't know the doctor, I would just wait definitely don't go pick it up. And so I was like, Uh, okay. And at this point, I'm on the verge of having a breakdown. I hang up the phone. I have a breakdown. I go in, I tell my boss, I have to go home. She's, like, very comforting, and I love her dearly. So that was awesome. So I go home and I tell my mom, and because I live at home with my parents still, because I would like to save money and buy a house one day, yeah, so that's the goal anyway. So I go home, I tell my mom, and she's like, Yeah, that's not acceptable. She goes, I'm so sorry that you're going through this, but at the same time. That's not acceptable. You need an appointment sooner. So I call back and I say, Okay, this is the situation. I tell them what's going on, and I tell them, I need an appointment before December 16, because two weeks from now, I could be on the floor croaking. So they said, we have a phone appointment with her tomorrow morning. I said, Okay, great, I'll take it. Oh, I guess I should backtrack a little bit too. I did ask them, if I were to pick up this insulin, how would I learn how to use it? They said, Oh, you can do a walk in clinic, and they'll teach you how to use insulin. They have it at this location. Blah, blah, blah. I said, Okay, great. I called someone else to get that appointment rescheduled or pushed up, and they said. And I asked them, should I still do that? And they said, we don't do that. I don't know what that other person told you that for i Can I
Scott Benner 21:42
say something? First of all, the person you spoke to the day before is just a person at the office with a list of calls they have to make. Yes, they don't know, I believe from Shinola is a saying that they would have used in the 50s. Okay, so and not their fault. It's not their job, right? Right? Like somebody should have said to you, go to an emergency room, right? Like, I mean, if we can't help you right now, you should go to the ER, God, it's fascinating. Yeah, this person over here will teach you to use the insulin. Hey, I'm calling to get lessons about insulin. We don't do that here. What do you like? What in the hell I want to thank the medical community right now for making my podcast so successful. Thank you so much. Like, I really enjoy making this podcast, and it's all because of those of you out there who are just terrible at your jobs. Let me just say so people don't get upset. There are plenty of people who are very good at their jobs, but the ones who are terrible at it, you really are. You're making a life for me, and I really appreciate it. I mean, Jesus, just do your job, and I'll have to go I mean, my next option is probably like, I'm gonna say cashier, you can get rid of me by just telling Michaela how to take care of herself, like, because you keep going. I'm so sorry. No, I'm getting upset. Don't be sorry.
Speaker 1 22:53
Yeah, I was just I was upset. So they said, I we have a with that same nurse practitioner. I call her my doctor. She's a doctor in my head with that same doctor that I was supposed to be scheduled with in December. She has a phone appointment in the morning. We'll get you scheduled with her. I said, okay, so she calls me, and the first thing out of her mouth was, I am so sorry you've been going through this. And I found somebody go ahead, yeah. And she was like, they should not have been doing what they've been doing to you. She goes, I know everything, like I've seen what they've been giving you the run around. She goes, this should not be happening. She goes, so first of all, I'm so sorry you're going through everything, including the diagnosis you do have type one diabetes. Here's what we're going to do. And so we discussed my daily habits, how that would work with like being type one she said, Now, are you available today? I said, Yes. She said, Okay, I'm going to schedule you with my nurse assistant. That's who you're going to be on the schedule for. She goes however, that is my lunch. I will be there on my lunch helping you learn how to use insulin, pick up your insulin before you get here. We will go through this together. So that was my saving grace. Let me tell
Scott Benner 23:55
you something that's going to make you you're going to think ill of me. I almost cried just now when you said that I'm seriously. I feel a little like, by the way, I don't know if you know this, but I went over this with Erica on one of the like, mental health issues, and it's she tells me that when I tear up, I'm crying. I just think of that as tearing up, but apparently I'm crying. So I'm gonna, just gonna say you made me cry just now that you found somebody who knew what was going on, who put you before themselves. Like, the whole like, did the right thing. That's awesome. Like, okay, all right, so you and her have lunch together. That's great. Did she eat while she was talking to I would have brought a sandwich if I was
Speaker 1 24:32
her. No, she didn't. But she she, she popped in and out, uh, throughout the appointment with her nurse assistant, or whoever the other person was that I was seeing. I don't really remember at
Scott Benner 24:41
this point at the end of that meeting, did you feel put how you felt prepared, like better,
Speaker 1 24:47
better kind of but also still devastated that I had type one and that this was my new life. So Right? No, I it was something I had to wrestle with for a little
Scott Benner 24:55
while, but to go by yourself. Did your mom go with you? No,
Speaker 1 24:58
we. I. We had a brand new 10 week puppy at the time, so my mom went with me, and then my aunt and my cousin came to watch the puppy in the car, while my mom went to the appointment with me. Oh, that was the other thing that was super nice, because my family all lives nearby, and my cousin, she has rheumatoid arthritis, so she knows what it's like to go through a diagnosis. And was very, very graceful, helpful and just like a gift from God, honestly,
Scott Benner 25:24
two things. So your cousin has an autoimmune issue too? Anybody else? Yes,
Speaker 1 25:28
my grandma on my mom's side rheumatoid arthritis. She was taking thyroid medication. For what reason? I don't know if it was Hashimotos or not. And then my grandma on my dad's side also has rheumatoid arthritis. And so I thought for sure, when my cousin got it, I was like, Oh, I'm next. But instead, diabetes got me. Instead, hey,
Scott Benner 25:46
Michaela, don't, don't lose hope. It could still happen. I'm well aware, and I'm a little nervous. No, but the other part is, you know, you're making people with crappy families very jealous and angry right now, your mom came to your appointment with you, and your aunt came along to watch the puppy in the car. Like, what do you guys like? Like a television show where everybody's happy. It's awesome. My
Speaker 1 26:08
family, my family, is pretty great. I have no complaints about my family. All of them just wonderful.
Scott Benner 26:13
It really was just, that's a wonderful story. Okay, so what's the puppy's name? By the way, Aulani. Okay. Oh, are you guys Hawaiian? No,
Speaker 1 26:21
but this kind of is related to the story. We had just gotten back from Hawaii when we got the puppy, so we thought, oh, we'll name her a little Hawaiian name. And so we did, and that's the story in itself, that I was in Hawaii with an A 1c of, you know, super high and unknowingly, and I was eating everything in the world. I definitely almost died in Hawaii. I almost went into DKA. I just didn't know it. So now
Scott Benner 26:44
I'm looking at your picture. You're an incredibly Caucasian person, yes, and your name is Michaela, yes. Do people just love Hawaii or the culture Polynesian? Is there something I'm missing? So the
Speaker 1 26:56
name isn't from there that I'm aware of. My mom got the name from a TV show. Oh, what TV show? Doctor, medicine woman. Oh, no kidding, yeah. So Dr Mike. Her name is Michaela, and so that's where she got the name. But she heard the name, didn't know how to spell it, so she spelled it, M, a, k, a, y, l, a, which then she found out that Michaela is the feminine form of Michael so it should be spelled M, I, C, H, A, E, L, A, your
Scott Benner 27:20
mom didn't have the internet 24
Speaker 1 27:22
years ago. What happened? No, no, I probably not. Lovely
Scott Benner 27:25
woman, but didn't look into the spelling your name. Okay? So she just,
Speaker 1 27:28
she just sounded it out. But there's so many ways to spell it anyway, so it doesn't really matter. That's
Scott Benner 27:32
lovely. Okay? I just, I mean, then the dog's name was what it was. And I started wondering, what was going even your last name, like, I started thinking, like, maybe your dad's Asian, and I just don't see it. Nope. Is Asian the right word? Oh, God, 2024 I don't know Japanese is maybe what I meant. Mostly, okay, I'm gonna say Japanese. I do not want to hear from you people. I'm very old. I did my best. I don't mean anything I
Speaker 1 27:56
did. I got that a lot in in elementary school, where they would think that I was of Asian descent of some sort, because of my last name, and I would show up the whitest little kid there was
Scott Benner 28:05
so, okay, okay. Michaela said Asian too. So I feel like I'm okay. I feel like that's fine, but okay. So we have diabetes now, but I don't want to start down that path till I hear a little more about what you said. I wrestled with that for a while, meaning having type one. Can you tell me a little bit about
Speaker 1 28:21
that? So I don't even know where to start. I've never been afraid of needles, because as a kid with thyroid issues, I was going to get lab work done all the time. So I got over that fear real quick, but I did have a slight fear of injections. I do not like the thought of things going into my body. Take all the blood you want, but don't put things back in really? So, yeah, it was a weird thing for me that I just like the thought of it just like, gave me the heebie jeebies, like I just hated the idea of, like, injecting something into my body. So that was something that was a struggle for me, and then also knowing that all the weight that I lost was not earned. It was something that I was gonna put back on and probably just put back more than what I wanted. And it was very upsetting to me, because as a kid, growing up dancing, I always wanted to be like, super stick thin, as thin as you could get. And so I was like, Oh, I finally got it. And then they were like, Oh no, just kidding, you're sick. And I was like, oh, okay, great. So
Scott Benner 29:16
in a moment when you overwhelmingly thought I am making good decisions. I am so healthy. I'm on the path I mean to be on. What you end up finding out is I'm not healthy. This has nothing to do with my decisions, and I am going in the absolute opposite direction of where I wanted to go. Yep, yeah. And then how long does it take you to go through that? Do you do it with a professional help with family? How do you navigate that?
Speaker 1 29:39
Mainly family and my faith in the Lord above. So those are my two, my two saving graces, and
Scott Benner 29:46
that that was it. How long do you think that process was? I want to say
Speaker 1 29:49
about maybe three months before I was finally like, okay, like, this is, is what it is. And I think that was around when I found your podcast too. And I was like, Oh, sweet. Okay, I can do this. So that's
Scott Benner 29:58
my next question. And is, how does a 22 year old find a podcast about diabetes? I
Speaker 1 30:03
was just searching for people that could answer questions, and I found Reddit, and I didn't even know Reddit really existed, which I know sounds strange for someone my age. I just didn't know I like, heard of the term Reddit, but I never used it. I didn't know what it was. Found Reddit, got on Reddit, asked people questions there all the time, and then somebody was like, Hey, listen to this. And I was like, okay, so I did, and then I found your Facebook group, and then the rest is history, I guess. Oh, that's
Scott Benner 30:24
awesome. I've found Reddit to be incredibly supportive of the podcast overall. And like, I appreciate it. I really don't, because it's a place I'm not at. So yeah, it's nice to know there are people out there making these suggestions. So tell me how it was valuable for you.
Speaker 1 30:39
It was really just because I was constantly emailing my doctor about, like, what do I do now? This is happening. What about this? This is happening. And she told me, please do that. She was she was like, I'm here for you. I'm here to help you. Yeah, but she's not working 24 hours a day. So you know there was times where it's like, midnight, and I'm like, what's happening here? And and she's not gonna be able to tell me, so I would go to Reddit, and that's when credit was like, Hey, let's do this. This will help you. So it helped me to give me a peace of mind, knowing, like, oh, somebody else did this. This is what they did, and it worked for them. Let me try it. I actually think I started with the Pro Tip series. I don't know if I started. I don't think I ever started with bold beginnings. I think I started with pro tips, and I just dived into those. And then I went from 1716, a 1c, to a 12 within one month. And then I went to a 12 to a six within, like, I think, four months. And then I've been under five for over a year and a half now. Oh, good for you. Congratulations or not, under five in fives. My God, I was gonna say, like, you got the fours. No, I wish.
Scott Benner 31:33
No. What did you find? I mean, you were on MDI at that point. Is that, right? You got into fives on MDI?
Speaker 1 31:41
I did. I was actually on fives MDI for a year before I transferred to Omnipod.
Scott Benner 31:48
What would you tell the people who tell me all the time that my content is too pump centric and that it's not for people with MDI? I'm gonna
Speaker 1 31:56
say I felt the same way at first, but then I realized that you can do the same things, you just have to be more on top of it and maybe not snack as much if you don't want to take as many injections. But that's about the only thing that I noticed was like something real difficult for me was like, oh, I want to eat the snack. I don't want to inject. So it's either I eat the snack and have to eat the snack and go high or don't eat the snack at all. So that was one thing that was, like, a little bit different for me, because I felt like you could kind of snack more on the pod and still keep your blood sugars under control. But other than that, I feel like that was about the only thing other than, I guess, like temporary basal. But I would, for me, because I surf all the time, if I knew I was going to surf the next day, I would just inject, like a unit or two less of my long lasting the night before, and then just know I would maybe dose a little bit more for my meals if I needed to, if I thought that, you know, I injected a little bit too little Yeah, but it never seemed to be a problem. If I knew I was going, I would just make sure I was I was prepared. And if I didn't know I was going, and it was a last minute decision, I would just bring snacks with me and make sure that I had no insulin in my system before I went
Scott Benner 33:02
out, is surfing kind of a mix of anaerobic and aerobic, right? Because the paddling, I would imagine kicking is aerobic, but then being up on the board is probably a lot of muscle control, right?
Speaker 1 33:13
I guess. So, yeah, I feel like it's more aero, anaerobic or aerobic,
Scott Benner 33:17
more like pumping and running, or more muscular, more running, okay, because of the paddling and kicking,
Speaker 1 33:24
yes, yeah, and then yeah. I don't know that's what my experience is, but maybe I not really paid attention. I guess, does the fear of sharks at all like, enter your life? I get that question a lot, really. Okay, where do you surf at? I surf down in Southern California. Okay, do you have you ever seen a shark I have not. However, I have seen a shark attack happen at the places I surf at, but I have not been
Scott Benner 33:48
slow down. This was out in the surf or back at the beach, or where did you say it? I
Speaker 1 33:55
was at home, but I saw it on the news. Oh, I surf there, and I was like, Oh, that's great. Oh, I see.
Scott Benner 34:00
I thought you were like, there when it happened, because I'm gonna guess, if you were there when it happened, what you would tell me is, I love surfing, Scott, but I don't do it anymore.
Speaker 1 34:09
No. And the person was fine. They just the shark, I guess, caught their board and took a little dink out of it. But
Scott Benner 34:15
no big deal. Yeah,
Speaker 1 34:19
I don't know. I have faith that the sharks don't want me. They want other things. So I'm going to keep that thought in my mind.
Scott Benner 34:25
Okay, well, listen, it's because you know what. You know why you think that? Because when you were six years old, your parents didn't take you to see jaws in a movie theater. That's true, yeah, but mine did, listen. I'm going to sound like a baby, but if I can't see all the way to the bottom, I'm not interested in your water like I live in New Jersey. You couldn't pay me money to walk waist deep into the ocean in New Jersey. I wouldn't do it. I'm a baby. You
Unknown Speaker 34:50
understand? Yeah, I love the ocean. I cannot relate
Scott Benner 34:52
not how I'm going out. Michaela, that's it. That's valid. Yeah, that's all. That's all. I also want. Fall off a ladder. I want to tell everybody right now, I spent $180 a year having my gutters cleaned because I am not having my last thought. Be it only would it cost me $180 have these gutters cleaned as I'm falling to my death. Do you understand that's I won't do it. I won't do it. So that's it. I'm not getting eaten by a shark. I am not falling off a ladder. These are pretty much the only things I'm worried about. I assume my wife's gonna kill me, honestly, like, you know, and it'll be justified. I don't think she'll do jail time, you know, that's how I always assume I'm going out. Nevertheless, I want to go back to what you said about the podcast. And thank you. Oh, of course. But seriously, like, it's really cool to hear somebody mimic back to me my intentions. You know what I mean? Because you make a thing and you think, Gosh, I hope this is how it's received. And then to hear that it was but by a 22 year old who, let's be honest, like I'm too old, like you shouldn't be listening to my podcast. It's silly, like we shouldn't find each other, but that we did and that it helped you so much, I just, I feel wonderful about that, like I'm just, I'm excited to know that that content in its form was that valuable for a person like yourself. Yeah,
Speaker 1 36:11
I love it, and I still listen to like, all the episodes, just because they're entertaining. So I find, I find it fun,
Scott Benner 36:19
excellent. So I It doesn't matter how old I am, is what you're saying? No, it does not. Yeah, I agree. I'm wearing very comfortable sweat pants. I look like a kid from my waist down. Like, if you saw me from my vision right now, you'd be like, That guy could be like, 25 I believe it. It's not that you see me walking or you go, Oh, that old man has on pretty hip pants. Ridiculous. You have any brothers or sisters? I
Speaker 1 36:40
don't I'm an only child. Oh, why? What happened there? My mom did struggle to get pregnant for a while, and then my dad and her were like, are we good not having kids? She said, Yep, we're good. And then surprise, I came. So they were like, Okay, well, we have kids now, so that's fine. We wanted kids originally, so we'll flip back to that. And then by the time I was two, she's like, No, I'm not ready for another one. That's three, no, I'm not ready for another one. And then I was four, almost five, and she asked me, she goes, Do you want her brother sister? And I told her, and I quote, no, I be only one. And she said, You know what? That's fine. I don't want to start over with another baby. Anyways. So my mom and dad were both happy with just me. It's
Scott Benner 37:19
possible that you just named your episode. I be only one. I love it. That's awesome. Yeah, I like your mom too. She's like, Yeah, you know what, you were kind of a problem. So I don't feel like I need to do it twice. Listen, I agree with her, yeah.
Speaker 1 37:33
She She says that I was just fine, but she did have a lot of work trying to manage my thyroid as a kid, because it was like, I throw a tantrum over something silly. And she's like, Huh? Like, this is not you. So that was a lot of work for her. So I wouldn't blame her. I
Scott Benner 37:47
heard you talking about that earlier, actually, and it was definitely something I was going to get back to. The idea that, like, your mom was very aware of your mood and your personality being tied to your thyroid.
Speaker 1 37:57
Oh yeah. Then when I was undiagnosed, she was like, your thyroid is wrong. Go to the doctor. And I was like, I have it's fine. I don't know what to tell you. And so we had a few arguments about that one, because I was like, I'm fine. I don't know what you want me to do. She's like, You're not yourself. And I was like, Well, I feel myself just you're not and so yeah, it was a constant back and forth of like, you need to go the doctor figure this out. I'm like, I have my lab work is fine. I don't know what to say.
Scott Benner 38:19
So how irritating is that, that your mom knows you that well, not that irritating, honestly,
Speaker 1 38:23
kind of kind of helpful, until I'm actually in the situation. I'm like, I'm fine, and sometimes I'm right, sometimes I'm wrong.
Scott Benner 38:29
Be honest, has she ever just in the middle of you having a moment? Has she ever just slid the medicine vial of like Synthroid across the counter at you?
Speaker 1 38:39
No, but she'll always be like, you take your meds this morning. I'm like, Yes, I did constantly. So yeah,
Scott Benner 38:45
that's not fun. Arden forgets sometimes. And I'm like, Hey, have you been taking your stuff? She's like, Oh my god, leave me alone. I'm like, Oh, it sounds like a no,
Unknown Speaker 38:54
yeah. That normally means no, yeah.
Scott Benner 38:56
Nobody's ever like, oh my god, leave me alone. When what they mean is, yes, I've been doing exactly what I'm supposed to be doing, right? I think it's worth highlighting because, I mean, I've had your experience right? Like, I've had it with with iron, like my irons gotten low. Your personality changes, your tolerance changes, like your your mood changes, and you don't know what's happened, yeah, you know. So it's nice when somebody will reach up and say to you, Hey, have you? My wife said it to me recently. She's like, how's your iron? And I was like, I'm just mad. I But, but then I did put it in the back of my head, and I thought, I am gonna watch this now, because, yeah, maybe she's just seeing it earlier than not. Turned out not to be my iron. But it just turned out that everybody in my life was a pain in the ass that day, including some of you online. But nevertheless, I'm fine now. Okay. So how long do you do MDI for?
Speaker 1 39:50
Let me think I just started the pump this past February. Oh, so from November 22 to February of 24 what
Scott Benner 39:59
pump did you go. Of Omnipod. Oh, did you that because of the podcast
Speaker 1 40:03
I did, and because it was tubeless, and I like to surf, and I did not want to take the pump off to surf.
Scott Benner 40:07
Awesome. Okay, omnipod.com/juicebox, if you guys want to try it. Did you have a CGM with MDI?
Speaker 1 40:13
I did. They actually gave me a trial CGM the day that I had my first appointment. She said, Here, take this. You're going to want it. And so they put it on me there, and I've had one since day one. Awesome.
Scott Benner 40:23
Hey, you don't have to if you don't want to. But would you say that doctor's name out loud? Because she sounds awesome,
Speaker 1 40:28
I would. She is nurse practitioner, Margaret Guerrero, good job. Margaret. She's actually on your list, on your website, from the like the ones that people can add about being great doctors. She's on there. Did you add her to juicebox.com or did? I did not someone else had to have I was going to check and see if she was there, and she was,
Scott Benner 40:46
Wow, great job. I mean, honestly, like people who are doing a great job deserve to be shouted out like that. And she, she sounds like she really is for you. How was the transition from MDI to Omnipod?
Speaker 1 40:58
Yeah, it was interesting, because I was on g7 when I got the Omnipod five, so I did not have integration at the time, and so I kind of just used, I kind of liked it, though I liked the slow transition from manual to you're basically doing manual, but with something that doesn't have to poke you every few hours. Yeah. And it was nice to adjust my basal rates as I wanted, and play around with that. So I really knew what my rates were without knowing or without having the system do it for me. I really did like that, and so I did that until the integration basically came out for g7 and Omnipod five. I did have some leftover stash of g6 though. So when I was done with my g7 I used up the g6 is to try the automation. And at first I hated it. I did not like it. I was like, this is not keeping me where I want to be. My a 1c, is going to be so much higher. I hate this. I want the control. I'm a type A person. I do not want this thing making decisions for me. And so I was just fine waiting for the automation. And then when it came I was like, Okay, I need to get this thing a fair shot. And I definitely switched back and forth, depending on my mood and depending on if it's actually working for me that day or not, I feel like sometimes if I'm not as active, it's not good enough. So I will just switch into manual and and make sure that I have control. But other than that, I love it, and I felt like the transition was pretty smooth when I did do MDI to manual pumping to then automated mode, because I felt like it was a learning experience to use the manual pump right? Because if anything went wrong, I knew how to be in manual. I also knew what my basal rates still were. So if I had to go back to MDI, I'm not like, oh my gosh, wait, what? How do I do this again? So it's been to me, a great and smooth transition. I did not feel super stressed. I didn't feel overwhelmed or anything like
Scott Benner 42:39
that. Yeah, I think, I don't know how Omnipod feel about me saying this, but I think it's great that you that you use manual when it's necessary. I honestly, I think that's I think people who are more in tuned with what their needs are, with their insulin and proactive about it, I think generally do better. That's probably how you're keeping everyone seeing the fives. Yeah,
Speaker 1 42:59
yeah. I agree. And I also sometimes don't like where it keeps me at night, like it'll keep me at 110 which is it's gold, like it's doing its job, but I like 9100 so sometimes I'll, just before I go to bed, throw it into manual, and I know that I'll be where I want to be all night, and then when I get up and start doing things, I'll put it into automated so I don't go low, or just don't have to focus on it as much. I
Scott Benner 43:19
knew you were type A, by the way, when you basically floated the idea that you're in charge of what the sharks think. So I was like, Do you have any anxiety? Or are you just, is that just type A personality? No, no anxiety. No. Okay. Is your mom like that? Or your dad? Who's got this? My
Speaker 1 43:36
mom is type a worse, like, I don't say worse, because not necessarily a bad thing all the time, but, yeah, more type A than I am.
Scott Benner 43:43
Worse, you said worse. I think we'll stick with it. My mom's more type A than I am. She's a plus. Yeah, that's a good way to put it. Your dad doesn't care. Is he all chill?
Speaker 1 43:53
My dad is, is very, very chill. I get that from him in the sense of, like, it's weird. There's certain aspects of my life that I'm like, Yeah, who cares? It's fine. Whatever works. Like, go with the flow. My mom's not really like that. But then when it comes to, like, other things, like my grades, I was like, I have to have straight A's. I don't care what I have to go through to get it. I have to have straight A's. Like, that's where it kind of came into play. For me, was more in like, I guess goal reaching, right? And to me, diabetes is a constant goal that you have to reach. And so it kind of feels like school where I'm like, Okay, I have to get under a certain point because that's an A plus, or this is a B, and I don't like B. So
Scott Benner 44:24
Arden's changing, like, where she's going to school right now, and as she's leaving, she's like, I don't care about this. I got a good grade. It'll be fine. And then you're talking to her, and she's like, well, if I get this on that, and I'll have this, and I'm like, do you care? Do you not care? In Arden, I think there's enough of me and enough of my wife, and they fight with each other, like she's like, I'm super chill, but not really, yeah, and yeah. What did you go to school
Speaker 1 44:51
for? I went to school to become an American Sign Language interpreter. Oh,
Scott Benner 44:56
and is that what you do? It is tell me how you make. A living doing that. So
Speaker 1 45:00
you can work almost anywhere as an interpreter, because anywhere that you do things, deaf people do things too, so and they need communication access. So then there you are to interpret. I really like interpreting college classes. They're fun because you're kind of getting an education of stuff that, like, you don't have to do the work for, but you get to learn about, which is fun, but you're interpreting, and it's a fun process to interpret. And I just like the college atmosphere. So I do tend to interpret college I do this thing called Video Relay Service, where, when deaf people need to call a hearing person, or a hearing person needs to call a deaf person, I'm interpreting that phone call. So I sit in an office and I take the phone calls and I interpret the phone calls while the deaf person is on a screen and the hearing person is in my ear. Those are the two main places I do work. And then there's also what's called community work, where you just go out into the community where people need you, like the doctor's appointments or a warehouse work training or a safety meeting for this business and things like that.
Scott Benner 45:57
I don't know what's wrong with me. I think I'm a lady, because now I'm crying again. That's so nice. She's, oh, by the way, not that women cried. You know what I mean? Like, I just, I can't take it. I've said this before, but once I was like, a stay at home dad, I just sort of gave myself over to it. You know what I mean, like, and so, like, you know when ladies say, like, I feel my ovaries twitching, like I think I feel that sometimes too, like this is so nice, like you're out there doing that. Can I ask a reasonably self serving question here? Sure. Like when you show up at an auditorium, how many people are you signing? Is it signing or interpreting? How do I say it? Yeah, interpreting signing. Okay. How many people do you find yourself doing? Can you be in a group of 600 people doing it for one person?
Speaker 1 46:41
Yes, depending on the situation, yeah. Like some people do concert interpreting, which I've never done, because I find it to be a little bit stressful, because you have to know the meaning of the song to interpret it. And a lot of times I'm not very good with that. I'm like, Oh, these are the lyrics. I follow the lyrics, but that's not really what song is about. So I don't find myself doing that, but that's a good example of that, where there'll be, like, one deaf person in the entire auditorium for really famous persons concert, and just interpreting for just one person.
Scott Benner 47:07
Yeah, I take your point, because what could yellow by Coldplay be about? You know what I mean? Yeah, yeah.
Speaker 1 47:12
It's just, I find interpreting songs to be difficult. Like, if you wanted a word for word interpretation, I'd be happy to provide that. But if you want the actual meaning, sometimes I'm not the greatest for that one. When it comes to songs,
Scott Benner 47:22
my thought around asking was you just made me as you were telling your story, and I was feeling so good about it, I was like, should I have somebody do this for, like, the Pro Tip series or something? Or
Speaker 1 47:34
I actually have thought about that so many times of just doing that on my free time. But I was like, I have no following, and nobody's ever gonna find it. And I don't know how I would ever do that for because sometimes the episodes are long, so I was like, I can't interpret them by myself. That's one thing about interpreting. You tend to switch off every 15 to 20 minutes, depending on the content, because your brain, like, literally, cannot interpret for that long without starting to kind of break down and and stop working, because it's a very thorough process. Some people can go longer, and they have a built up stamina for that, and that's great for them. But a lot of people, most people, I would say, actually, for their own mental well being and their physical well being, because it can be tiresome, will do every 2015, 20 minutes and switch off with another interpreter. So I thought about doing that, but I was like, Man, I don't know that that's going to work. So I've never done it, but that's funny. You mentioned it because I have actually thought about it, because I was like, man, there's so many deaf people with diabetes in the world. I would love them to hear this too. But, you know, I mean, they can read the transcripts. But some, some Deaf people aren't English language learners either. They strictly are American sign language
Scott Benner 48:34
so, oh, oh, no kidding. Oh, that's interesting. I didn't realize that you have two voices in a transcript. Do you need two interpreters? Or is that not necessary?
Speaker 1 48:45
Not necessary. It would be helpful, if for visual reasons, but it's not necessary.
Scott Benner 48:51
Is there a number in your head? If I said to you, what would it cost you to do an hour recording and interpret it onto video? Yes, there is a number in your head, okay, yes, share it with me afterwards. Okay, okay. And I don't care if it takes a while to do you could do it 20 minutes at a time. Doesn't matter to me. In your free time. Listen. I'm right now for the people, I'm reading A Christmas Carol for the podcast for Christmas, and I'm through the first Dave and I got done, and I'm like, oh my god, am I gonna keep doing this? So I know what you mean about the sitting down and like I was exhausted, like I did the first chapter of the I sat down to do the first part, you know, the Marley's ghost part, and I was just like, at the end of it, I was like, oh my god, I'm exhausted. My thought is, is like, do I have you put all this work in to find out that, like, it's not going to be used by anybody I
Speaker 1 49:41
know. I've thought about that too, but I will say I do know there's a lot of Deaf people with diabetes, type one or type two, regardless, out there in the world. So I would hope it would find them and if they'd want to be interested. But yeah, I wouldn't know for sure if
Scott Benner 49:54
you're listening to this and you're a advertiser, and you think to yourself, how great would it? Be if Michaela was signing and my logo is in the bottom corner that said sponsored by blah, blah, blah, maybe send an email, because that might be awesome. I have the same problem with Spanish speaking, by the way, but I think AI is gonna finish fix that problem. So I don't think AI is gonna fix your thing ever. Or are you one of the people who's like, AI is gonna ruin me.
Speaker 1 50:21
I have mixed feelings about it. I think it's great in some aspects of things, and then I think some people overuse it and try and depend too much on it. But I don't think it's gonna destroy the world, at
Scott Benner 50:30
least not yet, exactly. But I'm talking about, like, for your job, like, are you worried that somebody could just, oh
Speaker 1 50:36
no, yes and no. I guess I think that there could be things that will come up where it will maybe take some work away from real life interpreters, but I think the deaf community, from what they've shared with me, because it's not my world, it's not my culture or my community, but from what they've shared with me, they want face to face interactions. They want people. They want that communication with a real, live person. They don't want just some robot. That's why they don't really like transcripts as much as they prefer an interpreter. They don't want to have to write back and forth most of the time. They want interpreters. They want that like face to face communication and American Sign Language. A lot of the language is on your body, not just your hands. It's your face, your facial expression, your mouth movements, your body language, your shoulders, like everything. So it would be interesting to see AI try and achieve that, but I don't know that it would would be possible, to the extent that some interpreters can interpret that. I
Scott Benner 51:26
didn't know all that, but it doesn't surprise me as you're explaining it. That's really interesting, actually, all right. Well, we'll afterwards, we'll talk about a little bit. So is there anything that I haven't asked you about that I should have
Speaker 1 51:38
I'm trying to think. I don't think so. I remember I put down talking about transitioning to a pump, and we did that, and my diagnosis story, I guess that would be I guess that would be it. You have a
Scott Benner 51:52
little bit here about anything else. Let me ask you about this here. You said the mental capacity that diabetes requires in the beginning and how it affected my relationships. Oh,
Speaker 1 52:02
yeah. I definitely noticed myself changing after I was diagnosed. I don't know if that's because I thought I had one personality with high blood sugars, and then I realized, Oh, my personality is different from that. Now, the mental capacity it took on me was it was a lot with body dysmorphia. It's something I struggled with growing up being a dancer and seeing dancers always to me, most dancers were always super thin and skinny, and so I was never overweight, but not being that either was something I always struggled with as a kid. So then having that experience, then go back to the way I was was, was mentally loading on me, plus having to manage the sugars, plus feeling all of the symptoms go away, and technically supposed to be feeling better, but feeling worse, because I got so used to it for so long, it was just a lot. And so I definitely noticed some of my relationships changed. Some of them got stronger, like friendships and everything, but others dwindled away because they they didn't know how to handle the new way of my life. They just they, they kind of ignored it and pretended like I I hadn't changed. Nothing was different, and I'm not saying to treat me differently. I'm not saying that like everything has to be different, but they just weren't really supportive in the process. So I did notice a few friendships dwindled because of that. So it was something that was kind of shocking, but also like, eye opening at the same time. Yeah, can I
Scott Benner 53:22
hear more about that, please? So you're saying there are people in your life that you counted as close to you, and they ignored diabetes
Speaker 1 53:31
in the sense of like, oh, everything's fine. Nothing's changed. I'm like, Well, no, it has changed. Like, I have to do this now, and they would just be like, Oh, okay. Like, they just, they didn't seem to want to. I'm not asking everybody to care about it and to learn about it, but they did not seem very supportive of the things I had to do, like, if I would complain about something or, and I'm not saying I complained all the time, but if I were to complain, like, Oh, my blood sugar is high right now, they're like, Oh, well, what do you want to do about it? Like, they wouldn't, like, provide any sort of support. And so I'm the type of person that likes to talk things out loud. And like, you know, have people listen and give feedback. I like that, that kind of camaraderie of just talking, listening and making comments on what I've just said, and vice versa. Like, when they say the same, like, say something they want to share something with with me, I try and engage back in the conversation to let them know. Like, oh, I'm interested. And there's a few individuals that did not had that same response,
Scott Benner 54:24
what did that do to you? Like, why did it ruin the relationship you could and by the way, I want to say, like, I don't think you're being unreasonable about your expectations for people, but I'm asking because you are not the first person that said this. And I know people personally, people I love, who've lost relationships more than friendships, like marriages. You know when their diagnosis has happened and they don't get back what they want or need from that other person, and when you don't get it back, I don't know what happens there. Like, is it like? You know what I mean, like, once they don't mirror what you need, what does that do to. You.
Speaker 1 55:00
I think for me, it's disappointing and it's just more like, Okay, I It's and it's eye opening for me to realize what I need to do for my friends as well. Sometimes I think it can be very one sided, but for me, I was like, Okay, this is how I feel because they're doing so and so and so. It made me realize, okay, I need to be more aware of my actions and my words and my behaviors with my friends that I have and make sure that when they need something for me, that I'm providing what I think they would need or want for me, and to even ask them, like, what do you want from me? Not just to assume that they want or need this, but it was kind of a learning experience and a way to improve upon myself. I took it as something that like I could improve my relationships that I do have with instead of just saying, Oh, see you later. I don't need to be in a relationship or a friendship or whatever it is with you anymore, but I will say I didn't lose any friends over it. It was just, we're definitely not as close. We don't hang out as much. It's just more of like a an acquaintance, like, Hi, how are you? Yeah, I also debit or was like, Oh, I don't want to be in any contact with you because you did this. Like that. Wasn't like
Scott Benner 56:01
that either. Do you imagine that this drifting would have happened on other subjects as you got older? The Diabetes just maybe brought it to a head quickly,
Unknown Speaker 56:08
absolutely, absolutely,
Scott Benner 56:09
right? Interesting. Okay, I appreciate that. It's very understandable. But, and I imagine a lot of people go through it, you just seemed like you really had thoughts about it. So I wanted to let you get them out, because I get that feeling of like it's not like you're like, demanding of somebody, like, my life has changed now you should change with me. But right? It's just a human like, back and forth that is not unreasonable to think is part of a healthy relationship. Is that
Speaker 1 56:37
the idea? Yeah, I guess that would be it. And the just ignoring it to me is, like, the main thing that was like, bothers him to me, where it's like, if I would mention anything about it, was like, Oh, Okay, moving on. Like they did not want to even think about it. And I was like, does this make you uncomfortable? Like you got to tell me these things so I know what to do. But they just, they wouldn't. There was no, no, really, communication back with how they were feeling about it, either. And like, if this is something that bothers you, we need to talk about it. But if it's just because you don't want to face the fact that I actually have this now, which is not even your disease, it's mine. But I understand if that's the case, then we need to talk about it. But right,
Scott Benner 57:11
yeah, I have like, two last questions for you. So my one is, are you past the idea of something being injected into you, or does it not bother you as much? With the pot pump on it doesn't
Speaker 1 57:20
bother me at all period anymore. It took only, like, I want to say, maybe a week or two. And I was like, Okay, I'm over it.
Scott Benner 57:27
And I also enjoyed talking to you very much. So if I want to fire Arden, what do you know about Bridget Mendler? Like, can I
Unknown Speaker 57:34
I love her. I think she's great.
Scott Benner 57:36
Would you have had opinions like, Arden, if I would have had you on to talk about it? Did you not hear that episode? Did you hear that episode? No, I
Speaker 1 57:42
did. I did. I don't know if I would have had opinions like her. I feel like I'm very, like, passive accepting. Yeah, I can be very passive about things. Like, if you think one thing, I'm like, Oh, cool. I'm glad you think that. Like, I'm not gonna go in with my with my comment if I don't agree, because I'm like, there's no point. Like, I'm glad you think it. So I feel like that. That's where it would be. Kind of
Scott Benner 58:02
might not be the right one for me then, but I did like talking to a lot, so
Speaker 1 58:07
I'm glad I enjoyed talking with you, too. It's nice to actually talk with you and not just listen to
Scott Benner 58:11
you. Did you have that weird feeling where you thought, like sometimes if I was monologuing, you felt like you were listening to the podcast?
Speaker 1 58:18
No, I don't think I did. And my I never connected the dots. Now, awesome.
Scott Benner 58:21
So we were always having a conversation. Sometimes people say, like, you started talking for 30 seconds, and I got, like, lost, because I felt like I was listening to the podcast. Oh no, I don't feel like I did cool. No, you did a great job. And I stand by what I said. You're like, 37 in your mind, I'm pretty sure, oh boy, no, I think that's probably good. I bet you get that house and like, and things work out for you. You seem well
Speaker 1 58:45
thought out. So, yeah, I hope I try to be. I do try to be. Is this a
Scott Benner 58:49
thing? You find a lot of your friends doing the staying home longer to try to save money?
Speaker 1 58:53
Yeah, yeah. Most of my friends actually live at home. I only have one friend who is engaged and living on her own and will be married soon. So obviously that's a little bit different, because she's a little bit further on with other things in life. But yeah, most of my friends don't just move out on their own. Just to move out. They stay at home to save
Scott Benner 59:11
money. You're not on any timeline about being married, right? I was when I was a kid. I'm not now, really. When you were a kid, what did you think was going to happen?
Speaker 1 59:20
I wanted to be engaged by 2425 married around 2526 and then kids by like 28 and now, now I'm almost 25 I will be next month, so I don't see the marriage thing happening now. I would just like to make sure that I'm happy in life. And whatever that leads to is
Scott Benner 59:39
what it leads to. That's awesome. When do you think that changed for you when I
Unknown Speaker 59:43
ended a six year relationship?
Scott Benner 59:44
Oh, that girl? Yeah, no, I know. Yeah. No, I get what you're saying. What a piece of am I right?
Speaker 1 59:51
We're actually still friends. No, that's okay. That's okay, but I
Scott Benner 59:55
understand. Listen, you and my son are the same age, but. He has a girlfriend, and you would definitely make a baby with diabetes, so I'm good to keep you away from him.
Speaker 1 1:00:04
Yeah, yeah. I actually it's funny. You say that because there was one person I did my pump training with, and if he hears this, that's kind of embarrassing, but oh well, I did my pump training with him, and he had a lot in common. He was the same age he had and and it was just funny, because I was like, Oh my gosh. Like, we have so much in common. And then he started talking about his fiance. And I was like, Oh, okay. I was like, that's okay. We'll make a baby with diabetes anyway. So that's not probably a good
Scott Benner 1:00:25
idea. McCallum is up to, like, do you surf because and he's, like, got a girlfriend. Is that what happened?
Speaker 1 1:00:31
No, he we were talking about sea life animals and how he has sea life tattoos, and then he talked about his fiance's tattoos, or his wife's tattoos. And I was
Scott Benner 1:00:39
like, Oh, gotcha, you were almost all in before you heard about the fiance.
Speaker 1 1:00:42
I was like, I'm like, I'm interested. Like, I kind of want to see where this could go. Like, it was just a pump training. I don't know what would actually would have happened, but in my head, I was like, Oh, that's cool. And I was like, oh,
Scott Benner 1:00:51
nevermind. That's awesome. You guys. Yeah, you definitely would have made, like, Captain America out of diabetes or something
Speaker 1 1:00:55
like that. Yeah? Like, oh no, no, no. Not a good idea. Or,
Scott Benner 1:00:59
you know, I wonder, I'll tell you what. I'd love if people are listening to this now and they're like, and they're like, look, I'm an adult with type one. I have a I'm married to a type one. Our kids do not have any auto immune issues. Please call me. I would love to, well, call me. What's it? 1978 let's just send me an email. Call me. Please. By the way, none of you call me. I don't want that. Don't want that at all. And those of you who think you have my phone number, you don't, but definitely send an email about that. That'd be awesome.
Speaker 1 1:01:23
Yeah, I'd like to listen to that too. I've always wondered about that. I'd like to pick through that
Scott Benner 1:01:27
because, I mean, in the end, you start telling me there's RA on this side, there's RA on that side. I have type one. I'm not surprised by that. You
Speaker 1 1:01:34
know, I also had chronic hives, which could be autoimmune too. So, oh, my
Scott Benner 1:01:39
son got the was the how my son figured out he had Hashimotos.
Unknown Speaker 1:01:42
Mine was not related to that, but, yeah,
Scott Benner 1:01:45
it's another, like, it's like an immunity issue, like your body just over, over, attacking something, right? I guess his, my mom had them too, but she thought
Speaker 1 1:01:54
hers was from her birth control, and, like, three months later, after she stopped birth control, that went away. So she thinks that's what hers was from, but that's what hers was from, but that's still hormonal, because birth control is hormonal. So
Scott Benner 1:02:04
who knows? Yeah, hormones are terrible. Yeah, yeah, is the bane of most, uh, evil. Michaela, I don't know. I'm gonna stop because, if not, you and I are gonna talk all day long. You're awesome, like, I You definitely are just an old soul, because I'm an old man and you're just like, I like the podcast, you know, I like talking to you. Yeah, fun. All right. This is very cool, and a proof to all of you out there that I am young at heart and I will never die. I just want to say that I agree. That's my plan, by the way around. But people are like, Why are you taking the weight loss so? Like, seriously? I'm like, I am trying to stay alive longer. I didn't think about it like that when I was younger, but now I you get a little older, and you're like, Oh yeah, I'm trying to stay here. You know what? I mean, yeah, yeah, definitely. All right. Cool. Hold on one second for me, okay, yeah.
The podcast episode that you just enjoyed was sponsored by ever since CGM, they make the ever since 365 that thing lasts a whole year. One insertion every year. Come on. You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode, we've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with Diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox dot com, slash juice box. 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 if you're living with type one diabetes, the after dark collection from the Juicebox Podcast is the only place to hear the stories that no one else talks about, from drugs to depression, self harm, trauma, addiction and so much more. Go to Juicebox podcast.com up in the menu and click on after dark there, you'll see a full list of all of the after dark episodes. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com,
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#1481 Melted Squirrel
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
Charlie tricked me into coming back—and now her child has type 1 too.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox Podcast.
Charlie is back. She was originally in Episode 1327 called beaver tail. She kind of tricked me and came back on today because she didn't think she did a good job the first time she spoke. But it turns out that since she was on the podcast the first time where, by the way, I think she did a great job, her child has also been diagnosed with type one since then, so we've got some new things to talk about. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. AG, one 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/juice box. To get this offer, 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. I'd love it if you would go to T 1d exchange.org/juicebox, and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d, exchange.org/juice, box. It should not take you more than about 10 minutes. US med is sponsoring this episode of the juice box podcast, and we've been getting our diabetes supplies from us med for years. You can as well. US med.com/juice, box. Or call 888-721-1514, use the link or the number. Get your free benefits check and get started today with us. Med, today's podcast is sponsored by the insulin pump that my daughter has been wearing since she was four years old. Omnipod. Omnipod, com, slash Juicebox, you too can have the same insulin pump that my daughter has been wearing every day for 16 years. My
Charlie 2:28
name is Charlie. I am from Canada, and I am here to talk about the last year of my life.
Scott Benner 2:34
Awesome, but before we begin and find out about the last year of your life, you said that you've been on the podcast before, and you thought you were awful. I
Charlie 2:43
was just awkward. And I know why I thought I was through the thick of it, like of my my own diagnosis, right? And which I was doing better than the initial diagnosis, but I was still not doing very well. I was high, I was hungover, I was just so desperate. I was desperate to be the voice that I needed to hear. And I was just, I just sent your style.
Scott Benner 3:08
No, wait, wait, wait, what Episode Do you know what I called it?
Charlie 3:12
I think you called it beaver tails. But I haven't looked. I haven't had time to look and see if it's, if it's up yet. But it was in May, like, I went on to, like, schedule initially, and it was like, six months in advance, and then I went on two weeks later. I'm like, oh, I should schedule. And you had it, you must have had a cancelation, because there was an opening. It was on my birthday. So I'm like, oh, meant to be. It's
Scott Benner 3:36
definitely called beaver tail. Now I'm interested. It says Charlie has gestational diabetes. Had gestational diabetes to all three of her pregnancies, and now has type one. Yeah. Well, wait and you're saying that in this episode, you were here, but you were looking for something for yourself. What do you mean by that? I was just
Charlie 3:55
struggling so much with my diagnosis. I was struggling the fact that it happened, I was struggling to manage my diabetes. I was just struggling. I was mostly lonely. I learned that later I was so lonely I'm a ladder or I mean, I don't know. I've heard different things about Latin type one as an adult, but I couldn't find anyone that could relate with me so well, except for you, you and your Facebook page and your podcast. So, but even then, lacking a bit of the latter stories and like the shock of like the adult diagnosis. So I'm like, I'm going to add my story to that that might help someone
Scott Benner 4:35
else. Oh, I bet you, it did. So how old were you when you were diagnosed for, like, when you got the type one diagnosis, 3232 32 Yeah. How young were you when you were pregnant the first time? How old's the oldest kid? He used five. Okay, then you said 32 you subtract five. You're 27 Yep, you rolled three kids out in five years,
Charlie 4:55
three kids in three and a half years, when, when the third was born, he. Was three and a half, yeah, two to three kids in three and a half years. I know, like
Scott Benner 5:03
a situation where you're in Canada, it's so cold you can't go outside something like that, yeah. I mean, you gotta keep warm somehow I understand. Okay, you had gestational with the first one they said, Oh, don't worry, when you're done being pregnant, it'll go away, yep. And it did. And it happened again and again. And then, well, the third one
Charlie 5:19
was assumed type two or gestational they didn't know, but ended up being the onset of type one. Yeah, interesting. So the Yeah, it was starting before I got pregnant the third time, right? With lots of lows, like as low as 2.6 after a snack. That was the lowest I ever got. And I wasn't on any medication for diabetes. That was just my body doing that. And then the pregnancy made me high. Throughout that third pregnancy, they had an inkling that they saw signs that this, you know, this doesn't seem like gestational so they tested me for the antibodies the week before the baby was born, and it was high. It was very positive and very
Scott Benner 6:07
positive. Hi, Canadians. You use the metric system and the very positive system. Yeah, go ahead,
Charlie 6:14
very positive. Well, I've learned later because I've seen people's I joined all the Facebook pages, and I've seen some other antibody tests, and they're like, barely high, and I was really high so, but they told me that a month after baby was born, and they're like, you're going to be type one, but we don't know when, wow, Charlie. I'd
Scott Benner 6:34
like to point out I think there's only just one Facebook group that the people need to join. But I
Charlie 6:38
agree with that. Now I didn't know that initially take
Scott Benner 6:42
me through that little journey. So you're looking for people who understand your situation that seemed very important to you, even just by the way you spoke about it just now, and you ran around and joined a bunch of Facebook groups. So what was that experience like?
Charlie 6:56
I just searched type one diabetes initially, and then I was searching for Lata, because I was I joined these type one pages, and everything was like, oh, like, how do you get your kid to eat after you dose? And I'm like, That's not my problem. I know when I'm eating. And I'd scroll on, and all these pages were about kids, yeah. And like, I mean, I I don't want to sound cold, I felt for them, but I'm like, That's not my problem. I need help managing this. And three kids, like, almost
Scott Benner 7:26
frustrating that you got close to the information, but then you know what I mean? Like, you're like, Oh, I found people with type one diabetes talking about type one diabetes. This isn't my their issues.
Charlie 7:36
Yeah, problem, right? But I haven't told you yet. Okay, let me give you, like, the key points of my last year, and then you can take it from there. So October, I started insulin. April, I started pumping with tandem. June, our three year old was diagnosed with diabetes. Then July, our three year old started pumping. And then a month ago, I got us both looping. No kidding. So it's been, it's been a year. That's for people
Scott Benner 8:04
who think that Canadians don't go to school. Look at that. I
Charlie 8:08
did not go to school. I'm trying
Scott Benner 8:11
to make a joke here. What do you what do you tell me? Wait, you graduated from some from high school, high school? Yeah, that's fine. That's school, yeah.
Charlie 8:21
And then I ran away and joined the world's largest circus. That's what I did. Did
Scott Benner 8:25
we talk about that in beaver tail? No, we did not. Well, let's do that for a half a second. Wait, what did you you ran away after high school and did what my daughter is, 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you. Omnipod.com/juice box, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once omnipod.com/juicebox get a pump that you'll be happy with forever. You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't receive. Respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works? And I picked it up. I was like, hello, and it was just the recording was like, us, med doesn't actually sound like that, but you know what I'm saying? It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it. Push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off, like a couple of weeks, or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Us. Med.com/juice, box, or call 888-721-1514, get your free benefits check now and get started with us. Med, Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new eyelet pump. Check them out now at us, med.com/juice, box, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox podcast.com, to us, med and to all the sponsors.
Charlie 11:06
Not, right? Like, a few years after high school, I joined the world's largest
Scott Benner 11:10
circus. Are you allowed to say the name of it? Or is that what it's called? I
Charlie 11:13
don't see why not. It's called Cavalia. I don't believe it's a thing anymore.
Scott Benner 11:17
Yeah, after they said you couldn't, like, whip an elephant, that ruined circuses pretty quickly.
Charlie 11:22
No, I was a horse circus, though, no elephant. It was, wait, it was a horse circus, yeah, Cavalli. It was a, like
Scott Benner 11:29
traveling rodeo.
Charlie 11:30
No, not rodeo. Like acrobatics, like a Cirque du Soleil plus horses. What did you do in this? I was a groom, so I looked after the horses.
Scott Benner 11:41
Oh, you just wanted to get away from home. Yeah, exactly. How come
Charlie 11:45
all my friends were off to like, university and college, and they're moving on with life, and I wasn't I was home with my own horses working, and I just needed to go somewhere, but I didn't know what to do for schooling. I didn't go to university because I couldn't pick something. And yeah,
Scott Benner 12:03
I picked the circumstance. Was that a good decision at the time? Oh, yeah,
Charlie 12:07
it was fun. It was, yeah, if I could go back, I would do it like I wouldn't change anything. No kidding, but if the job came up now, I would not go. You got
Scott Benner 12:17
these kids in the diabetes and everything? Yeah, it's still going an epic yet soulful theatrical experience that will take your breath away by its beauty. I don't know who wrote that, but I think it's a little incorrect. An uplifting and emotionally charged theatrical production featuring 70 horses and 50 artists. That's the thing you did, yeah, and you groomed, picked up the poo, cleaned them up. Did you shoe the horses? By any chance?
Charlie 12:39
No, there was a farrier for that, but we Yeah, lots of poop cleaning up, lots of horse clean. They're white horses. They're mostly all white horses, and horses like to lay in their poop, and so we had to clean the horses and keep them nice and white and shiny for the show. That's
Scott Benner 12:56
why I don't lay in my poop, because I'm white.
Charlie 12:58
Yeah, yeah, it stains easier. I don't
Scott Benner 13:02
need that problem. You know, I get dry skin. I'm sure it would pick it right up. I am a little ashy. Here I'm looking at my shins. How long were you in? Can we stop calling it the horse circus? What else should we call it? Cavalia is fine. I'm gonna go back to horse circus. How long did you do that for two years? No kidding. Now. Did you make friends there? Did you have so many? Yeah, emotional relationships, romantic relationships at Cavalia. No, nothing. Romantic No, couldn't find somebody. I didn't wasn't looking okay. How old were you when you said I probably got to stop shoveling this and get back to my life, early
Charlie 13:37
20s. Okay, I don't know that's more math. You think I'd be better at math now, I mean all the carb counting, but
Scott Benner 13:44
if you went to college, listen, I think some people are just like, it's not that you're bad with math. I think that timelines I'm not good at it. Like, if you ask me questions about my life, I'm like, Well, how old were you? Then I'd have no idea at all. I feel like a hypocrite asking people, I'm like, How long ago was that? How old were you? Because I would never know the answer to that question. Okay, so that's a life experience. You head home, you meet a boy who helps you knock out those kids, and now all the diabetes is here. Have you looked into those families like your family line? His is there? Auto immune?
Charlie 14:20
No, I haven't dug too deep. I haven't asked too much, but there's nothing in the immediate family, okay? But I just type two. Like, there's type two on both sides of my family. Yeah,
Scott Benner 14:31
there's type two. What about thyroid stuff or celiac or stuff like that? Nothing that I know of like, nothing interesting, nobody got a creaky grandmom? Ra, maybe, no, I'll be damn just you. I
Charlie 14:43
know I I mean maybe, but I don't think so. Yeah,
Scott Benner 14:48
I know it sounds like you're a super spreader.
Charlie 14:51
We just won the lottery. Oh, yeah, woo. When you
Scott Benner 14:54
spoke to me, I'm doing a little math here because your episode came out in October 2024 Which, by the way, already has me wondering how you're back recording this soon, so I have to remember how that happened, but that means that you and I recorded six months prior to that, probably, so, yeah, I don't know. Maybe April, May, May, okay, yeah, and how long had you had diabetes when you signed up to be on the podcast initially in May, five
Charlie 15:19
months. May was five months, right? October? Oh, so
Scott Benner 15:23
you signed up almost right away when you were diagnosed, and then, because you have to wait months to get on. No,
Charlie 15:29
it was only a two week wait. Like I said, You must have had a, yeah, you must have had a because when I first looked, yeah, it was like six months. And I'm like, wow, but then I probably got interrupted by a kid. I never booked it. And then when I went back on to book it, there was an opening two weeks,
Scott Benner 15:45
you skirted the system, yeah. So when I gave you the link, you didn't act. And then when you finally looked at the link, someone had canceled, and you were like, Oh, I can just do this two weeks. Don't tell the other people who are going to be on the podcast. That'll make them very upset. So you jumped on the podcast in April, recorded. It came out in October. It's now really just two months after your episode came out. So about eight months after you recorded, how did you get back on the podcast? Did you just, like, sneak in with the link again, or did you email me? Oh, I used the link. I didn't ask you to come back on. You just decided to come back on. Is that okay? I mean, no, but I'm delighted by it. This has never happened. Charlie, really? Yes, this has never happened before.
Charlie 16:28
No way. Yeah. I was just like, after we recorded. I'm like, I have more to say. So I'm like, and I'll have even more to say six months later. So I just immediately, like, I hung up from you and clicked the link and booked again. No
Scott Benner 16:43
one else listened to what she just said. Just keep going forward and imagine that. That can't happen,
Charlie 16:48
but it, I mean, meant to be, because now, because when I booked it, our daughter wasn't diabetic, and now she is. I have that,
Scott Benner 16:56
yeah. Okay, so let's go back to that moment. Right? You got done recording. Enjoyed it, but thought what? I didn't do a good job. I didn't say everything. Tell me how I
Charlie 17:07
just thought, like, I thought about it. It wasn't immediately. It was that night. I'm like, because I I was thinking about it the rest of that day. And I'm like, I just wasn't good. I was just so I was a tight ass. I was so focused on my notes, I couldn't keep my train of thought like on the tracks, and I I just it didn't feel right. Okay, so I booked so I booked again, Charlie, I'm
Scott Benner 17:30
going to tell you something, and this is a public service announcement to the people who have been on the podcast. Everyone feels that way,
Charlie 17:36
yeah, but I know it wasn't me like I was so I just didn't let you do your thing. I didn't let the conversation roll. I was just, yeah, so I'm like, I'm gonna
Scott Benner 17:47
book again. Did you steamroll me? I don't know. I feel like. I just felt like it was, I mean, that feels unlikely, doesn't it? No, like, I don't
Charlie 17:55
think I like. I wasn't rude. I was just, I don't know, I don't like it. So I'm like, I'll try again. All right.
Scott Benner 18:02
Well, listen, you've got about 45 minutes to fix this up of yours, so let's get going. All right. Also, please no one else do this. I just, please don't do this.
Charlie 18:12
I had no idea. Like, I just, you would send me a link from your website, because you send me a link and I'm like, oh, man, I should have just looked on his website. You
Scott Benner 18:22
can't sign up through the website like you have to get a link from me. That's so basically way, yeah, I don't know. No one's ever thought to go back and click on it again. I guess,
Charlie 18:31
or no one else felt like they messed up and had to try again. No, everyone.
Scott Benner 18:35
No. Charlie, listen most of the time. When I get done and we stopped the recording, the first thing people do is apologize, and I'm always stunned by that. I'm like, What did I not just hear like, we just had a great conversation? Like, what are you talking about? Like, No, I didn't. It's not me. I wasn't. I just think that it's not a normal thing for people to be doing. And you can second guess yourself to death. What I would tell you is that if you found the podcast valuable and it's helped you, it's built by a bunch of people who all thought they didn't do a good job on the podcast, so that, in turn, must not be true.
Charlie 19:15
Yeah, that's interesting, and that's good to know. And absolutely, I benefited from the podcast. Your podcast is what gave me my life back. Like, truly, I was not kidding when I say I was struggling with this, and then I found the podcast, and life became pretty much normal again. I'm glad to
Scott Benner 19:33
hear that, and this is definitely a way for you to, like, make me feel better so that I won't think about the other thing anymore. But that's okay, seriously, let's move forward. So you booked the podcast because you felt like you didn't do a good job, and you've been waiting How long since? How are you back on the schedule again? I booked in May. Oh, okay, May, June, July, August, September. Okay, that makes sense. Okay. So booked in May. You've been. Wait in six months? What do you want to say?
Charlie 20:01
I don't know. I made it through. You made it through the year. Like I just felt like I kept getting these curve balls. And like, with my daughter being diagnosed, she was diagnosed eight months after I was diagnosed, like I was still learning, like, everything I've heard from other people, it takes a year or two to to really understand your own diabetes, and I was only eight months in, and then two months into pumping. So like I was still learning my pump i and then I've got this diabetic three year old now, plus two other kids. It was just like, I just couldn't believe it like one more thing. So you're
Scott Benner 20:41
stunned. There's another thing to do. You're still learning about yourself, yeah, have you even come to grips yet with the fact that you have diabetes? Yeah?
Charlie 20:49
She her diagnosis helped me. It helped me. It gave my diagnosis purpose, because then she's just like, Mommy, yeah, and it has helped her so much. Like I read these stories of kids struggling, they're the only one in the family, and like, she doesn't she has had a really easy diagnosis. I caught it early too, so no, DKA, No, he wasn't admitted to the hospital. And then, yeah, she's just like mommy. So
Scott Benner 21:22
So you feel like that the two of you have this in common, makes that easier for her. But are you also saying that having to care for her is causing you to focus on yourself as well? Not
Charlie 21:33
so much focus on myself? I was trying. I've been trying really hard from the start to to manage this well. I always took it seriously and wanted to have perfect numbers, but her diagnosis made it easier to accept. Because one I was diagnosed, I just all I could. I just kept thinking, like, Why? Why did I get this? And not even just why, but why now, like, when I was diagnosed, my oldest wasn't quite potty trained, so it was even more work than a kid in diapers, and my other two were in diapers, and I was breastfeeding the baby, and I had two bonus two kids for before and after care. They get dropped off in the morning. Yeah, get on the bus here, and then get off the bus here. So I, I had five kids.
Scott Benner 22:18
You're like, I don't have time to time, and
Charlie 22:21
I'm high as can be, I don't understand why I'm high. Or I have this sugar hangover because I've been high forever, or I was high all night, or, or I got too low, like it was, I was on this roller coaster for months, yeah? And it was you. It was your podcast that got me off the roller coaster. My team started me on eight units of basic one. I only needed three. I was down to three. But it took months, and it was, it was you, because I remember, like, gonna do my needle, and, man, I can't. They kept tweaking me. Like, oh, try seven, and we'll try six. So no, I think you need, think you need the eight now and like, up and down, and I just eventually, like, once I learned how valuable your podcast is, get your basal right. And I'm like, Okay, I gotta this isn't working, so I cranked that pen back all the way to three, which it was a half unit pen. So it was a lot of clicks and and I did three units, and that was it. That was what I needed. Are you
Scott Benner 23:23
saying that all those clicks made you feel like, wow, I'm really turning this down. I hope this is okay.
Charlie 23:28
It was like, huge. I was trusting my team, and I didn't know there's, there's so much I didn't know about diabetes that I learned through the podcast. It's
Scott Benner 23:38
awesome. It really is. I got a note this morning from someone and they said, Hey, I saw something about the podcast. Share it out in the world. And they let me know that it was being shared. And you know, if you go and look people are, you know, just talking about how valuable it's been for them, which is really lovely. It was a nice way to start my day. And my thought was, oh, well, this will help combat the feeling inside when you see someone online call you an asshole. Yeah, it's great to hear that from you, that it that it was that valuable, and it got you moving in the right direction. Because, yeah, meanwhile, I want to say I'm joking when, when people speak badly about me online, I honestly, genuinely just think it's part of this. So, like, I don't really think that if you're going to make a podcast, there aren't going to be people who don't like you. You're helping make my day brighter by by telling me that, and I really appreciate that. Thank you. So basically, you listen to the podcast and it makes you think my insulin must not be right. Let me look at my basal first only to learn that the doctor's office and you live in Canada. So are they really a doctor? I mean, is it a, b, like, I don't like, you know what? I mean, like, is it like Dr Doolittle? What are we talking about? Really,
Charlie 24:48
well, my diabetes, okay, my GP is like Dr Doolittle, but my endocrinologist is fantastic, even fully supportive of loop, which surprised me at the time. I was bouncing between three endos and different nurses. Like, every time I booked an appointment, oh, like, every three months was a different dietitian, different nurse, different Endo.
Scott Benner 25:08
She didn't feel like you had any continuity of conversation,
Charlie 25:11
yeah. Like, on one hand, it's like, okay, I wish you didn't have to review my file in this much detail every time. But on the other hand, now I'm getting three different opinions.
Scott Benner 25:21
In the end, the opinion that wins has you with more than twice the amount of basal instantly you actually needed, yeah, yeah. And then in the
Charlie 25:28
end, it was my it was my opinion,
Scott Benner 25:32
the valuable one, exactly. So you so you were being over basal, getting low, eating a bunch, getting high, coming down. And that was just happening over and over.
Charlie 25:41
It was awful. And I didn't know so about basal is that keeps you stable. Because my experience with the pregnancies long acting is for your fasting number. That was it. I didn't know about the stability that never came up with my pregnancy. So I'd wake up high a few nights and go, Oh, it's my basal. And I'd increase it, I wouldn't look back and be like, Oh, maybe I messed up.
Scott Benner 26:05
So back when you were gestational you were taking just basal insulin.
Charlie 26:09
No, I was on meal meal time too. But once
Scott Benner 26:13
you were diagnosed, it did not occur to you that maybe what happened prior is what's impacting me now,
Charlie 26:19
yeah, so what they told me was, like, they always say, with pregnancy, it affects your hormones and it can make it hard to manage your sugar. So I just assumed, hey, I'm diabetic, but I'm not pregnant, this is going to be steady and stable and easy, like, easier than gestational and I was wrong. Like, so wrong, yeah, but I, I, I just didn't know. I thought it was all my mistake. I didn't know all the variables. They didn't even explain honeymoon to me properly. Okay? They just told me, like, over time, your pancreas will produce less insulin. So I assumed it would be this nice, steady, consistent drop over time. And then I like, now looking back, I can see I was honeymooning, but I didn't re I'm counting my carbon better, and I'm like, looking at everything else thinking I made a mistake. Yeah, I didn't know. So that helped with our daughter, because then when she was honeymooning, I'm I try. I didn't try that hard and like, we just have to survive the honeymoon, and then we'll get our
Scott Benner 27:23
settings right with you. You were you didn't know where to fight the fight even I
Charlie 27:28
yeah, I thought it was my fault. Man, I'm doing awful. Like, I need to manage this.
Scott Benner 27:33
And in the end, am I correct to say it's getting your basal state right, learning how to Pre Bolus your meals, making sure you're counting your carbs well, making sure you're understanding the impacts of other foods, like fat and protein, not staring at high blood sugars, not over treating lows. That pretty much it,
Charlie 27:50
yeah, yeah, that's it. Also recognizing like, hey, you know, this might be the pancreas. And just don't even just survive. I wish I could go back and just survive my honeymoon and not try and perfect my honeymoon.
Scott Benner 28:02
You didn't get caught up in the like, why is this suddenly happening like this? You just said, Well, this is what's happening. We'll get through this day. Eventually this will stop happening. Yeah,
Charlie 28:10
with our daughter, yeah, yes. That's what I meant, yeah, yeah, yeah. Oh. It was like, Kurt managing her was so much, like, more laid back because I knew already I'm like, Ah, it's your pancreas. And what I did, speaking of schooling earlier, I gave myself everyone says, give yourself grace. I decided, because I had heard from many diabetes, it takes one to two years to really get the hang of it. I gave him, I've told myself four years, because that's like a university degree, or like a schooling degree, I take your point. In four years, I will either know why this happened or it won't even be happening anymore. So when something happened, yeah, I'm just like, Oh, I've got three years left to figure this
Scott Benner 28:56
out. But that's not what they call true, because a lot of people get to the end of the amount of time they set for themselves and still not be there. But you figured that that's not really what you did though you went and found the podcast and you learned quickly,
Charlie 29:08
yeah, I mean, I'm still our highs. No, no, of course, but already most of them are, yeah, I'm I gave myself four years to like, help my mental health, my sanity, my stress levels, but we're, I feel like we're already there.
Scott Benner 29:24
You got to hear four years and how long? Well, I'm
Charlie 29:27
one year in a bit. What am I? I'm 14 months into this.
Scott Benner 29:31
Yeah. Well, then to that person online. I'm not an asshole. See, no, I helped this lady and her kid. I
Charlie 29:38
like I sometimes think about where would I be right now without the podcast, how long would it have taken my team to get my basal right? Charlie,
Scott Benner 29:47
which province are you in? Ontario? Oh, I don't know what that means. I just wanted to say, well, this isn't one that starts you with mph. Is it? No,
Charlie 29:59
I was Star. Started on basal glare and Nova rapid. And she was started on basal glare and Humalog. But
Scott Benner 30:06
still, in all, did you turn your basal up back then? Or did they
Charlie 30:10
at times I was, I was making adjustments between appointments, but then they would also turn it up and down.
Scott Benner 30:17
Were you honeymooning in that, that situation? I
Charlie 30:20
think so, yeah, but then, like I said, I didn't know.
Scott Benner 30:23
You didn't understand the honeymoon. Well, I didn't understand the
Charlie 30:26
honeymoon so I couldn't even consider it. I didn't know that's what it could be.
Scott Benner 30:31
So by the time you get through your honeymoon period, you and they have moved your basal all over the place countless times, and you're like, you said, roller coastering up and down all the time. That could have been your launch. You know, once the honeymoon was over, your settings could have been so far whacked, like, I don't know where you would have ended up or how long it would have taken you to get back from it. Yeah, I hear so many stories of, you know, sometimes you get a great endo nurse practitioner, etc, and they help you get through it very quickly, and sometimes you don't, but such a crap shoot. Like, are you going to get lucky and get that doctor and then live a reasonable life the way you are now? Or are you going to get unlucky and just chase this dragon until you you know, to throw yourself off of an iceberg? Yeah,
Charlie 31:17
I think I got lucky with my endo now. I don't bounce around endos anymore. I have found a good one, and he is good. And I didn't know that until just a few weeks ago, when I had an appointment and I talked to him about loop I was on tandem tea slim, and I said, Look, I had started looking into loop more when Sydney was diagnosed, her team had suggested Omnipod for tubeless. And I was like, Yeah, but I, I know the value of an algorithm. I want that for her too. And her team had said that what they see in kids this age is algorithms just put them on roller coasters. And my first thought was, well, that's a settings problem, right? I just kind of agreed with them, because I, I wanted to fast track my pump for her or her pump. I knew they had to trust me in order to get that done. I was like, okay, yeah, we'll do Omnipod. And that's when I started looking into loop way more. So
Scott Benner 32:10
you smiled and waved them into giving you an Omnipod so you could put her on loop. Watch
Charlie 32:15
also my, well, my Endo, um, had even went into my loop settings. And he's like, No, you should do this. You should do that. And I said, Look, I'm surprised you touched my loop. Like, I've heard doctors don't do that. He's like, Nah, that's a misnomer. He's like, you're going to do great. Loop is great, and you're going to be teaching us stuff soon. And that's when I learned, okay, I have a great Endo, but her team. I don't know yet. I don't know.
Scott Benner 32:42
Don't worry. Give him a chance. Yeah,
Charlie 32:45
so her team was kind of against the algorithm. And I'm like, Yeah, that makes sense. Blah, blah, blah. And I kept doing my loop reading, yeah. And everything I was reading was saying with with kids on such little amounts of insulin that she was on her basal before pumping was half a unit of basal glitter, sometimes eyeballing a quarter unit. And on Omnipod, it was point 05 every other hour. So all my reading on these Facebook pages, your Facebook page was diluted. You need more basal for loop to work. I emailed her team and I said, like, Hey, I'm still doing my loop reading. I hear diluted will make it better. What do you think? And they called me and they said that there's actually a shortage on the diluent. Parents whose babies like nine month old babies need this, truly need it. Are buying it off the black market, and also it's off label to use diluted in a pump, so the doctor's not comfortable with it. And I said, Okay, yep, that's not an option. Then that's fine. But a month goes by and I'm like, I haven't seen any complaints about the shortage of diluent on all these Facebook pages. So I posted, I'm like, Hey, like, in my Canadian Facebook pages, the local ones, is there a shortage on diluent? And nobody said yes. Like, everybody's like, No, we all have our diluent. What
Scott Benner 34:17
do you think happened then? What do you think that answer really meant from them. They just didn't
Charlie 34:22
want to do it because it's off label. I even called Lily and asked, is there a shortage on your diluent? And they said, No, there's no shortage. And they told me how to get it from the pharmacy, and I got it so now she's looping with diluted, and her team doesn't know yet. And
Scott Benner 34:39
you took care of that all by yourself. I did. You're an awesome mom, aren't you? Well, it was your podcast. Well, yeah, I mean, I'm awesome, but if I keep saying that, people are gonna get annoyed with me. So you're an awesome mom. Take credit.
Charlie 34:52
Well, I was chatting with Adam from Adam song. He reached out on your page and said, Hey, feel free to message me. So I. Private messaging with him, and he was helping me convert her settings, and just helping me, like helping to set me up for success with putting her on diluted. Oh, that's awesome, too. It was awesome like he there's a few things that I would have figured out myself. They would have been speed bumps, but he helped. He just tweaked it, and they weren't even a problem.
Scott Benner 35:23
You know, I daydream sometimes about moving the Facebook group into a like, a private group. Like, there are third party companies that make, they basically make Facebook pages, but it's not in Facebook, and they have more options, like, and one of those options is like, people can set chats up and talk to each other right there and, and I so dream of like, like, not even like, most people set those up to charge people to be members of them. My dream is to just pay for it and let everybody just be in there for free. But I don't know how to get people to leave Facebook to go use this thing. And I get scared that it'll, like, split the group up, but I know it would be a better experience. It would be nice if Facebook would just add some of these features, but nevertheless, and then you wouldn't be stuck with their algorithm. Posts you see, you would just see them all, okay, yeah, which would be really wonderful, but I just, I can't figure out how to get that accomplished, and I don't know that it would work, yeah, but it's so cool that you found that person, and that you guys, you know, struck up a little bit of a of a friendship there and and took care of things, yeah? And we're
Charlie 36:31
still, like, I, I've touched base with him the network, man, it's, it's been incredible.
Scott Benner 36:36
It gets around the problem that you outlined and me, you basically just told a story about trying to get diluted insulin that I told about trying to get an Omnipod when Arden was four, right? Like somebody, you know, in a, you know, I'm making air quotes, but in a position of power, decided that that wasn't a thing they wanted me doing, and then they gave me a bunch of excuses about why it wouldn't work. Right now, you know, I don't know. 16 years later, Arden has been wearing an omnipot for 16 years. But back when Arden was four and I was looking for a pump, my wife and I were out looking for a pump. You know, omnipot was very new at that point, and they were like, you don't want that. They gave me a bunch of reasons why I didn't want it. And, you know, you basically just got the same thing. Oh, there's a shortage of that. Oh, it's not okay to using a pump. Oh, this. Oh, that. What they really mean is, we don't want to be involved in this. Like, so, yeah, why don't you just go home and struggle through this till this isn't a problem anymore? Yeah, and it sucks. It
Charlie 37:35
sucks. And I just wish, like, if they're that uncomfortable with it, sign a waiver. Like, have me sign something I recognize that my doctor advised against this, but I'm doing it anyways, yeah? And then watch me do it, right? But, yeah, that's not going to happen, but, but, like, if you're that on, I don't get especially when I'm hearing all these success stories of little kids looping on diluted Yeah, so it's not that dangerous. Listen,
Scott Benner 38:01
I've never used the little insulin. I wouldn't begin to know how to even accomplish it. I don't know that. I couldn't figure it out if I had to, but I have. I've never been involved in it, but I have seen 1000 people talking about how valuable it's been for them when their kids are very small and don't need a lot of insulin. Yeah, you know, again, I'm proud of you for figuring that all out, fighting through the system and getting it accomplished. Thank you. You're welcome. It's very cool.
Charlie 38:25
It was a lot to do this past year, I bet, but even back to the community, like, when I was building loop, I was messaging these people from around the world, they're helping me, and they're like, feel free to pm me. And then I'm messaging them like I because I was determined, like, I'm not going to waste the time of all these volunteers, I'm going to find the answers myself. The answers are here. They have all the websites, they have all the documents, but sometimes I just couldn't find the answer, yeah, but post and then they just immediately share. Yeah, I got answers right away. It was incredible. It was just like, it brought me to tears a couple times as I'm thinking about all these random people around the world who are helping, helping me. Yeah, it was amazing. That's
Scott Benner 39:08
awesome. And I'm proud to be perhaps, the, you know, the person that set the community up, that facilitated the conversation. So yeah,
Charlie 39:16
like for Yeah, you did, like it started with the juice box. For me, that's awesome.
Scott Benner 39:21
I'm so glad. Yeah, hey, you mentioned earlier that one of the reasons you didn't go to you guys call it University, like college, is because you couldn't think of something to go for. If I asked you now, what would you want to go for? Do you still not know?
Charlie 39:34
Oh, I don't know. I don't know. That's interesting.
Scott Benner 39:37
I didn't know if something had popped up in the years and you thought like, oh, you know what I would have been great at. You know this?
Charlie 39:43
No, I mean, maybe something with a hydro company, because they have great health benefits.
Scott Benner 39:48
That's all, oh, just something to get, something to pay for the diabetes. Currently, do you have a job? Or are you raising the kids? I'm raising the kids. Yeah, yep. Yeah, that's awesome. What's your husband do? He works for hydro. Oh, I see. And he's got good insurance through them. Yeah, the health coverage
Charlie 40:07
we have, I'm so, so thankful for it. I just can't imagine. What do they do? Is it water, oil, hydro, electricity, electricity, power line. Gotcha? Power Line? Technician, yeah.
Scott Benner 40:19
Oh, does he lay lines? Yep, hang lines. Oh, that's awesome. Yeah. Does he have stories about birds and other crazy things that, oh yeah,
Charlie 40:28
melted squirrels and, yeah, he'll take pictures. And he loves finding a melted squirrel, because then that's the problem. He goes, I guess. Oh, that's like, they don't have to troubleshoot anymore,
Scott Benner 40:40
yeah, just peel off. Show
Charlie 40:41
up like, oh, there's there it is. They don't have to, God, yeah,
Scott Benner 40:48
but, um, but a great podcast. All right, so now listen, we're three quarters of the way through your episode. Are you doing a good job? Are you going to be happy with this? I do not need you upset again now that you know how the links work.
Charlie 41:02
No, I feel, it feels, yeah, it's good, awesome.
Scott Benner 41:05
Yeah, that's really great. What just saw you make me laugh. I just imagine you like, you know, being like, where's that link? I forgot to say something. I'm gonna be I'm gonna have to put like, a No, I
Charlie 41:18
won't do it again. Maybe, if another kid gets diagnosed, then I will. I
Scott Benner 41:23
hope that doesn't happen me too, although I'm enjoying speaking with you, but not enough for one of your children to get diabetes so that I could do okay, yeah, how involved with all of this is your husband? Have you been passing information to him about your daughter's care?
Charlie 41:38
Oh, he's been amazing. It's been incredible. He just took it in stride. He learned really fast. I was careful to not overload him with information, because I was watching him learn how to look after our daughter and and I was seeing myself eight months prior. Yeah. So what happens usually is he comes home from work and then he's looking after her. He's counting the carbs, he's dosing her. He's in control. When he's at work, I look after her like, I think we've done a great job sharing. And there was times like I'd see him doing something and I think I'd do it differently, but I wouldn't say anything. I think he has to learn. Are
Scott Benner 42:20
you finding that his different is different wrong, or just different, different, but still works
Charlie 42:26
sometimes different wrong? Like, there was times I'd think like, that's not enough insulin, or that's too much insulin. So then I think he has to learn. Like, so what if he gives her a bit too much insulin? We'll have to give her some juice, and now he knows what it feels like to give a bit too much insulin or not enough. You
Scott Benner 42:44
have some have those experiences the way you do. That's
Charlie 42:46
the hot yeah, yeah. That was at the very start. I wouldn't say much. I kind of just let him do it, but then moving forward, once he had a better understanding, then I'd be like, hey, maybe we should try this. But do what you want, and
Scott Benner 43:00
it's awesome. I'm very open minded. My wife tells me, I do everything wrong, and then I sometimes say to her, you know, when you're not around, I live quite fine, yeah, like, I've made a number of decisions over the years that have gone well because anyone noticed? No, okay, but that's maybe a different generation who knows she's a lovely girl. That's the first thing I want to say. And if she hears this, I'm just kidding. You've never done that every day, Charlie, what? What are the impacts on the other kids? From you having type one and then from your daughter being diagnosed? Well,
Charlie 43:39
the baby, she's not even two yet, so she's doesn't know, but our oldest, I'd say, he felt the new diagnosis a bit because of all the extra attention. I'm sorry. The baby just came upstairs and she playing with a loud voice
Scott Benner 43:54
so the baby can get up the steps. She came
Charlie 43:57
upstairs with a loud toy, and I'm I'm walking away from her. Just push
Scott Benner 44:01
her down the steps. No, push her. Just push her. The Fall will stop her from coming back. She won't try it twice. I don't think. No, you're fine. What? What's the loud toy,
Charlie 44:09
the rolly thing? She's walking with this cookie rolly. Oh, I used to love that when I was a kid. Yeah, she loves it too, which is fine. Does
Scott Benner 44:17
it do the uneven wheels thing, where it kind of looks like it goes up and down a little bit.
Charlie 44:21
No, it's a different one, even wheels, but there's like, wood in it that clicks around. Yeah, that's lovely. Joey is our oldest. He was jealous of the diabetes, and he has said it a few times. He's like, I wish I had diabetes. So I got a prize because we got the NIA prize bin for her needles within the first week, and you
Scott Benner 44:42
should have stuck him with a couple of needles and said, hey, oh, this feel worth it, by the way. Wait just real quick for the people who think I'm an asshole. I'm just kidding. So you shouldn't just stab people with needles. But did you do something to try to offset that and help him?
Charlie 44:58
He got a lot. Up more one on one time, like we'd point out, like, hey, like, let's go outside and ride your bike. So he learned to ride a bike with no training wheels the two weeks after her diagnosis, because we spend that much time with him. One on one
Scott Benner 45:13
you saw that quickly and you reacted to it. You know it's, can I say something? Yeah, Charlie, maybe you found your job just fine. You know what? I mean? I know. Yeah, yeah. Like, everybody doesn't have to run off to college and do a thing to have a great life and be super valuable and complete inside.
Charlie 45:35
Yeah? Like, I'm happy. I just wish I could make a bit of money at home. That's all.
Scott Benner 45:38
Yeah. Well, you got to get those kids to pay you for what the work you're putting in, right? That's all, if you figure that out. I think you've got a winning combination right there. Yeah, yeah. If only can you send them out in the street to sell pencils or Panhandle or something like that? What if they held a sign that said, My mom works really hard and I don't pay her anything?
Charlie 45:57
That would work? No, yeah,
Scott Benner 46:01
the cardboard would freeze and get wet, probably, and then nobody be able to replace Ontario, right? Oh, yep, sounds
Charlie 46:08
cold. They just had a they had a snow day yesterday. Well, of
Scott Benner 46:11
course, what happened? Tell and Friday. Tell people how many feet of snow fell yesterday? Well,
Charlie 46:17
it was just freezing rain yesterday. Oh, but we got like two feet on Friday, so they had, I had all kids, all three kids, home four days in a row. God bless
Scott Benner 46:27
you. The snow. It's very upsetting to me when I hear about it. Yeah, I don't like it. My son enjoys, uh, downhill, snowy things. Every time I see him, he's having such a good time, like pictures, videos or whatever. But all I can think is, isn't it cold? And he tells me it's not. But he says it's not. He's like, once you get up there and you start doing it, he's like, you don't really, you don't get cold. And I'm like, I don't know. It seems like it would be really cold. I don't know. I probably just grew up with parents who didn't like to be in the snow, although it occurs to my wife and I recently, my wife enjoyed the snow. I did not. So when the kids were little, and she'd be like, take kids out, and it's not big, like, they didn't really grow up being out in snow. Okay, my son took to it really quickly.
Charlie 47:11
The kids don't get cold because they don't stop running and shoveling. Yeah,
Scott Benner 47:14
yeah, right, you're making a point. Maybe I should have went out. That's too late. Now. My life is best paid by now, I'm too old to go out in the cold. And by the way, if I'm being honest, now that I've lost weight, I do get cold faster. Really. I'm like, an old lady. I'm like, is it chilly in here? My
Charlie 47:31
husband's so glad when he, when he shaves his beard off, he's like, it's cold.
Scott Benner 47:34
I don't know. Yeah, no kidding, right? Sometimes I go outside, I'm like, my god, it's cold. Like, I bought a jet. I've never really owned a jacket as an adult, but I bought a jacket. I was like, I gotta have something to put on when I go outside. So anyway, these are just my problems, not yours. I don't want to take up your time. What have we not talked about that we need to
Charlie 47:54
I guess. Her diagnosis, I caught it early. Yeah, her hair fell out, was the first sign, Oh, her hair fell out. Um, looking back, her hair was falling out over two weeks. But in the moment, you don't think your three year old's leaving a hair No, sure. So initially it was like, you pull out a hair tie and it's like, Oh, I'm sorry, sweetie. Like, I must have pulled pretty hard, because a lot of hair came out. And then you brush your hair and it's like, oh, I guess I haven't brushed her hair in a while, because a lot of hair is coming out. And after two weeks, it's like, No, her hair is thinning. Now it wasn't clumping, it wasn't coming out in clumps, but it was thinning like to the point that she looked like an old lady, like it was really, really thin. So then my first thought was, she has diabetes, because hair loss is from can be from stress, and my sugars stress the body, and I just snuffed it. And I'm like, Nope, I because I had to trial that kit in the house. I hadn't. I had decided to test the kids, right? But I hadn't taken her yet for that antibody screening. It was on the kitchen counter. Like, Nope, it's not so
Scott Benner 48:58
you sniffed it out, but then you didn't want it to be so Is that correct? Yeah, okay, okay,
Charlie 49:03
I just in the back of my mind was this voice of, like, diabetes and like, no, it's so unlikely that she'll be diagnosed. But made a doctor's appointment for the hair loss, which took another week. They said it was probably from a fever a few months prior, that it's actually quite common for kids to lose hair after a fever. We've had many fevers, and we've never they've never lost any hair or vitamin deficiency, yeah, so she ordered blood work, and I did say I'm like, by the way, I have diabetes. What are the chances? And she asked about her water consumption. Like, yeah, she has been drinking a bit more, but it is warmer out. We've been outside more. Like, I could kind of justify the water at that point. So she's like, Oh, her own sugars, just in case. But then it took a week to get the blood work done, and by then, her water consumption had gone up a lot. And I just, I had to poke her. So I did. I couldn't go to sleep. I just got to test her blood. And I done it before. Four twice months before. For some other reason, I thought she had diabetes, and I'm like, I'll test her blood. She'll be in the fives, and I'll just go to sleep. I tested her and it said 21.9 and my first thought was, oh, I'm holding the meter upside down. That has to be 12. But, I mean, 12 still not still
Scott Benner 50:22
would have been still
Charlie 50:23
not okay, but like 21 so I flipped the meter upside down, and I'm like, that's not right either. Then I flipped it back upright, and I'm like, it's 21.9 and then it hitting me like, this is this? This is diabetes. I told my husband, I said, Look, I just tested her, and now I'm crying. I ugly cried. I've never cried that hard in my life. I had this little voice in the back of my head that was like, she's fine, she's going to be fine. You already know what to do, but I had all these emotions, yeah, sure, and all these posts that I told you, I just scrolled on by, not my problem, not my problem. All I could think was, now, this is my problem too, not just me, but a kid. So I cried and I let it out, and then when it was out, I checked her ketones, and they were okay. So then I decided, okay, we'll just take her tomorrow. Because I'm thinking, do I have to go to the hospital now? Like I'd I never went into DKA. I don't know. I don't have that experience, so, but I did have the ketone meter for myself, and her ketones were okay. So I thought, Okay, one more night, it is fine. Not that I slept. I stayed up till two in the morning searching Google for any other reason she could have high blood sugars, and obviously there was nothing. Yeah, and then yeah, the next day, took her to the doctor, and that's when we got the lab work. Her blood sugar in the lab was 32 and her agency was 9.9 Wow.
Scott Benner 52:00
Yeah, that's really well. It's well done figuring it out just from the hair thing, and then getting through the process pretty quickly. I think he did a good job figuring it out.
Charlie 52:11
Yeah, I think so too. But thank you. It's nice to hear it. No,
Scott Benner 52:14
of course, you took me back to standing in a hotel room in Georgia with my son playing while he was playing baseball, when I got the phone call from Kelly that Arden had thyroid issues, and I was, I was so upset that another thing happened, yeah, I think because my son was there, I didn't scream out loud, but I, I remember screaming in my Mind, yeah, yeah. So I found that very upsetting. Actually, I don't know why. I mean, as, I mean, the diabetes was incredibly upsetting, don't get me wrong, but like, the idea of like another thing felt unfair, and you know, then you realize it's unrealistic to feel like only one bad thing is going to happen to you in your life, nevertheless, like, I know what you're talking about. So, yeah, I appreciate you sharing that. Jeez. Way to bum us all out at the end, Charlie, I know, right? I don't know what to say now, yeah. I mean, yeah, you really, you ruined the whole thing. Let's go back to, how do the squirrels melt? Exactly? They just, like, are they like plastic, like, you know, like, or like, when a candle melts on it, like, when you, you know, when you burn a candle and it like drips on the tables, more like that, you peel it up in a big like
Charlie 53:24
that. It's pretty goopy, looking from the pictures, I've never seen one like he doesn't bring them home. Wow. But yeah, the pictures, there's like, goop and maybe some bones,
Scott Benner 53:37
goop and bones. Yeah, it's weird.
Charlie 53:39
Weird. Well, that's
Scott Benner 53:40
much more upbeat than the thing about the kid get kid getting diabetes, that's awesome. Thank you. I know, by the way, goopy bony squirrel not an upbeat thing for those of you who think that I I'm not kind to animals, by the way, for anybody who might think I'm not kind to animals, I'm looking behind me here, and there's a rain forest of like, reptiles living in this room that somehow started with me going, like, I'm gonna get a chameleon, and ending with me going, I have too many chameleons.
Charlie 54:08
I don't. Haven't followed the podcast enough to, like, know a lot about you, because all I've done is listen to the episodes that will help.
Scott Benner 54:16
Oh, you do the Yeah. Oh, you're a very management focused listener.
Charlie 54:20
Well, right now I've had to, like, when she was diagnosed, I thought I'm going to listen to this podcast start to finish, and I got two episodes in, and I'm like, I can't do this.
Scott Benner 54:32
I better go get the stuff I really need. No Not even that. Oh, not even Oh, tell me. Well, I
Charlie 54:36
needed a break from diabetes. I'm like, I'm already still learning very much, learning me and my new pump. Now I have this three year old. So now on my downtime, I'm going to listen about No, I am living it. I'm not going to listen to it anymore. I had to turn it off, had to take a break. I understand. I had to, like I had to go back to my. Crime podcast. Well, I did the dishes. No,
Scott Benner 55:03
I completely understand it. I also just got a note from old lady last night who said the same thing. She's like, it's too much diabetes for me. I can't and then, but eventually a lot of people cycle through that and then come back and do what you did and start listening later.
Charlie 55:20
I know I will in time, but I'm not gonna binge it like I binged the series to help me learn about diabetes. Yeah, so I know one day I will get through them all for sure, at
Scott Benner 55:33
your leisure. They're there for you when you need them, if you want them, yeah, yeah, absolutely. Well, I really appreciate this. I can't thank you enough for taking advantage of the system and coming back on and retelling my story. I'm so scared for all the people right now who are like, I didn't do a good job. I still, I still have that link somewhere. Oh, my goodness, I can't believe please email me first and ask so we can get it all worked out.
Charlie 55:55
Yeah, you're gonna change your system now, aren't you a one time use link or something? I
Scott Benner 55:59
mean, I've been thinking about it for about an hour now. Like, I wonder if the system, like, makes these, like, maybe I can make links that expire. That would be a good idea. Yeah,
Charlie 56:11
I'll book one. Now, before you do that, no,
Scott Benner 56:14
no, yeah, no, no, I pre it's such it's so funny. Like, when you said you were, like, a returning guest, and you're like, and I was on beaver tail, and then I went and I looked, I was like, that just came out. I'm like, I don't do things this way. I was like, Well, how is this possibly happening? But now you described, uh, you described it very fully. I understand what happened. So there's a flaw in the system, same flaw that lets those squirrels get through the electricity, I guess.
Unknown Speaker 56:40
Yeah, really.
Scott Benner 56:43
Well, you Canadians, you're just normal people like everybody else, right?
Charlie 56:47
Yeah. I mean, we apologize a lot. I believe we don't say sorry five times a day. We risk losing our citizenship.
Scott Benner 56:56
I love that you said sorry. Thank you for I know you don't know that you just said sorry. You think you said sorry, but I really appreciate that you did
Charlie 57:02
it. Oh, the like, with an accent. It's
Scott Benner 57:04
one of my favorite, like, Canadian words, accent situations like, sorry, sorry, yeah, it's my it's my favorite. It might be my favorite one. Actually, you guys do a couple of that are, like, about or a boot. Now the a boot thing that's too overdone, yeah? Everybody over here a boots all the time when they when they're making fun of you Canadians, yeah, I just the story to me, like, you've changed the word completely. I had no idea. And at the same time, the way it gets drawn out actually adds to the story. Like, like, like, you really are sorry. Not just like, Oh, I'm sorry. It's like, Well, I'm sorry,
Charlie 57:40
there's like, a sad tone to it. Yeah, yes, the
Scott Benner 57:44
way the words pronounced adds sadness to the tone. It's just very Canadian, in my opinion. And I, of course, know nothing about Canada, but I mean, if you're gonna listen to me about my opinion about Canadian, this is the most Canadian thing, except for beer and working in oil fields, apparently, which is a big thing there. Well, maple syrup, yeah. I mean, what an oddity, right? And why is it so expensive? I don't know, but I love it in my coffee, in your coffee, yeah. What the hell are you serious? How do you bowl us for that? At
Charlie 58:17
first, I didn't before I found the podcast. Have I talked about that enough? I would do an hour Pre Bolus on tandem or with MDI on MDI be like 30 minutes to an hour Pre Bolus. But with Luke, now, I don't need to wait that long,
Scott Benner 58:30
okay, because it hits it more and more as it rises.
Charlie 58:33
Well, I can type it in as a fast acting carb. Oh, I see. And it and then it. Loop has been awesome, amazing. Yeah, yeah. I went from like 85% in range on tandem with a lot of intervention on my part, to like 90s, mid 90s, time and range, and I changed nothing, and I still eat pizza.
Scott Benner 58:52
Wow, good for you.
Charlie 58:54
That's awesome. Yeah, I couldn't believe it. They
Scott Benner 58:56
had pizza in Canada.
Charlie 58:57
Yeah, you have pizza in Canada, but no maple syrup on it. Why? That's just in the coffee Canadian
Scott Benner 59:04
pizzas, most popular pizza in Canada, is typically made with tomato sauce, mushrooms and bacon. The dough is not made in a specific way. I don't believe that you have pizza. I'm not. I'm not joking. I genuinely don't. It's not like, a big, thick, like, no, it's thin crust, too interesting. You get deep pan. You can get the deep pan pizza. I don't want that. No, if I ever come, I'm gonna have pizza while I'm there, just to judge it. Dominoes. No, see, that's not pizza. You don't know. I knew. You didn't know about pizza dominoes. Dominoes is fast food. Ah,
Charlie 59:40
okay, then maybe we don't have pizza. You don't.
Scott Benner 59:42
There's no way you do. I don't know why, but it can't be possible. You can't. Oh, my God, are you ever going to travel
Charlie 59:50
here? Probably not in the near future. No, all right, I'm just
Scott Benner 59:54
saying, if you ever get to the East Coast, just, please, just anywhere, even on the street. You. You'll be like, Oh, this is so good, or you'll hate it. Who knows? Maybe you just maybe you've got a taste for the dominoes. I do have a taste for the dominoes. Do you ever order any of these other scary things that they have, like the cheese filled things, or the macaroni and cheese, or do you stick with the pizza? Mostly, not
Charlie 1:00:15
the No, not the mac and cheese, but their chicken bite, those are good. And then the cheese bread, the philly steak. Cheese bread,
Scott Benner 1:00:23
philly steak I get. I am from Philadelphia, and I guarantee that there's nothing about that that would mimic you having a cheese steak here in the city. Well, there is a Domino's perfect combo deal for $20 that has so much, and I'm going to use air quotes food in it. I can't understand how it's only $20 there's a pizza. There's lumpy things. Other lumpy there's a lot of stuff here, dipping sauces. I pick
Charlie 1:00:53
based off of what coupons they offer. Okay, they always have a mix and match coupon. So it's like 899, for all these items, and I picked from those.
Scott Benner 1:01:03
I just have to say, I want to say this out loud, if you are bolusing for dominoes and all the accouterments that come with dominoes with something I taught you, I'm a fucking genius, that's what I'm gonna say right now, because this stuff does not look good. No, we
Charlie 1:01:19
had, like, a few days into looping, we had Domino's Pizza, and I'm like, Alright, I'm prepared for a high. Because I'm like, I'm I'm gonna do the like, five minute Pre Bolus, and because with tandem, I had all my tricks to, like, not go high. And I'm like, I just gotta start somewhere with loop, I didn't go, I hit, ate something, and then came back down, and that was it. I couldn't believe. No,
Scott Benner 1:01:42
I'm a genius. I'm going to come right out and say it also, I want to tell you all that if you just go to YouTube and search for Stadler made pizza, you'll learn to make a dough there. Then I'd like to see you make your own sauce, throw a little bit of Montreal cheese on top of it, put it in an oven, bake it up. I really think Canadians, you would love this. I want to get you away from dominoes or pizza. Pizza, Little Caesars. Yeah, we do. That's there too,
Charlie 1:02:07
not in our town, though, we just do dominoes. Okay?
Scott Benner 1:02:10
Saddler made YouTube learn to make a pizza for yourself. I think you'd really enjoy it. Okay, I will look that up. I mean, you've got three kids, they would love making pizza. They
Charlie 1:02:22
would Oh, they do love making pizza, but we get the like the frozen No,
Scott Benner 1:02:26
no. Charlie promised me you. You tricked me and came on the podcast space, promise me you'll make pizza one day.
Charlie 1:02:32
I promise you. Oh, I will look well, yeah, I write this link down, then I got
Scott Benner 1:02:38
no Statler. SP, T, A, D, I'll find it for you. It's S T, A, D, L, E, R, pizza dough. Oddly enough, the guys from, I don't even know where, he's got quite an accent. He has great short videos about how to make pizza dough and how to, like, ferment it, and then, you know, it's a little bit of a process, and you're not gonna have a pizza oven, but I still think you can get away with doing it in your regular oven at a high temperature kind of quickly. I see this as being a nice family. I'll give it
Charlie 1:03:11
a shot. I will. I'm gonna do it. Yeah, thank you. We haven't had to keep the night in a while, so
Scott Benner 1:03:17
if I just do this real quickly, I think I can use the guys. The guys got such an interesting voice. Hold on one second.
Speaker 1 1:03:23
Slowly start to suck up all the voice and start to stick onto the table. In case this happens, I have one tip for you. Try to blow some air underneath. Okay,
Scott Benner 1:03:32
I don't know what accent that is, but some of the fish knows how to make pizza, so you don't know. Yeah, how would you know what an accent is. Yeah, we don't have accents, right? Just listen, if you don't make the pizza, call me up and just say, oh, you know, I'm sorry. And then that'll be the end
Charlie 1:03:48
of it. I'll make it, and I'll post my graph into Facebook. Thank
Scott Benner 1:03:52
you. Thank you. Last question, I'll let you go. Right. All right. What do you think it is about the Canadians and the apologizing?
Charlie 1:03:59
I have no idea, but I was sick of being teased for it when I worked for the circus.
Scott Benner 1:04:04
You're not joking though, right? Like you're you're apologetic by nature. I
Charlie 1:04:09
don't know where it came from. I think it's, it must just be a word. It just must be like, we don't always mean it. We just say it, kind of thing. Oh,
Scott Benner 1:04:18
you don't think you mean it when you say it. Not
Charlie 1:04:20
always sometimes, yeah, it's just, I don't know.
Scott Benner 1:04:24
My wife would tell you I haven't apologized since I met her, and she might be right, and I feel bad about that. I don't know. I just didn't know if you had any insight about it. You almost apologized while, while explaining why you might apologize. You were like, well, you know, I mean, it's just a thing we do and, you know, like, it gets like that all the sorry. I don't even know you were a split second away from going, I'm sorry, but I can't answer your question about sorry, so I don't know anyway. God bless you. And that was a weird thing to say. I have no religious holdings whatsoever, but I but I'm really happy for you and the success you're having. Manage. Your your child, yourself and how far you've come in such a quick amount of time. So, really, seriously, well, thank you. No, it's my pleasure. Hold on one second for me. Okay,
Charlie 1:05:08
okay.
Scott Benner 1:05:17
Arden has been getting her diabetes supplies from us Med, for three years, you can as well us med.com/juice, box, or call 888-721-1514, my thanks to us, med for sponsoring this episode and for being long time sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox Podcast com to us Med and all the sponsors, a huge thanks to Omnipod, not just my longest sponsor, but my first one, omnipod.com/juice box. If you love the podcast and you love tubulin pumps, this link is for you. Omnipod.com/juice box, I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. If you or a loved one was just diagnosed with type one diabetes and you're looking for some fresh perspective, the bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to Juicebox podcast.com and click on bold beginnings in the menu. Hey, what's up? Everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording doing his magic to these files. So if you want him to do his magic to you wrong way recording.com, you got a podcast. You want somebody to edit it? You want rob you?
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#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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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
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
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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.
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