#759 Bold Beginnings: Guilt, Fears, Hope and Expectations

September 22, 2022Scott Benner

Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.

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

Scott Benner 0:00
Hello friends, and welcome to episode 759 of the Juicebox Podcast.

Jenny Smith is back. And today we are doing another indie bold beginning series. Today's topic is interesting. There were a ton of questions that all revolved around guilt, fears, hope, and expectations. So Jenny, and I just sort of sat back and had a conversation about those ideas. We worked in the questions from you, the listeners, and we shared our own. I don't know remembrances of different things that we thought might help you get more comfortable with type one diabetes. I appreciate if you consider going to T one D exchange.org. Forward slash juicebox. And completing the survey. That's it. I won't give you a big thing you hear about it every day on the podcast he one D exchange.org. Forward slash juicebox. completing the survey will take fewer than 10 minutes. It'll help a bunch of people, including you, me and other people with type one T one D exchange.org. Forward slash juice box. And if you want to hire Jenny, she works at integrated diabetes.com. type that into your browser. Go find out about Jenny

the Omni pod five automated insulin delivery system is here. And they're the sponsor of today's episode. If you'd like to learn more, or get started with Omni pod five, go to Omni pod.com Ford slash Juicebox. Podcast is also sponsored today by Ian pen from Medtronic diabetes. The in pen is an insulin pen that has much of the functionality of insulin pumps. To learn more and get started go to in pen today.com. Jenny, we're just going to do one big thing today. And that's it. Awesome. All right. So for the bold beginnings series, which by the way, I'm starting to see feedback about online, which is very exciting.

Jennifer Smith, CDE 2:15
Yay, we're finally, hopefully it's yay, feedback.

Scott Benner 2:19
Do you think if it was bad feedback, I would have brought it up while we were recording another?

Unknown Speaker 2:23
Well, you know, you have to give honest feedback when other people would really like to hear a little more about this or didn't really agree with that, or what, uh, you know, honesty is

Scott Benner 2:33
that made me laugh. I mean, I would have that conversation. I'm gonna be honest in front of people, I would have that conversation with you privately, privately. Giving feedback, and really no one likes this, I didn't realize that people are finding it useful in the way that he intended. So that's perfect. Very excited. So today, we're going to hit this one doesn't seem like fun at all. It's a Monday morning. But this one is, is titled guilt, fears, hope and expectations. And there are a lot of

Jennifer Smith, CDE 3:07
questions are mostly like comment, oh, let's

Scott Benner 3:10
dig right in and find out I'm sure it's full with honestly. So I think, you know, I don't even want to give my opinion yet. Like, let's just talk. So the first person said that they're that they experienced immediate grief around diagnosis. Just immediately, like, like a loss had happened. I've talked about this on the podcast before, I've tried to have therapists on to talk about how you manage grief. Because I don't know from a technical standpoint, but it's so strange, isn't it? We just talked about this before we were recording it. Yeah, we did. Yeah. I guess I'll say it here while we were recording. There is a reaction that you have when you get bad health news and bad health news that isn't going to get cured. You know, it's not like, well, you have the flu, just try not to die for six days, and you'll be okay. Again. That kind of stuff. There was

Jennifer Smith, CDE 4:06
when I go back to being the tennis pro or whatever, you go, go go

Scott Benner 4:11
back to your life, this is all going to be fine. But when I was diagnosed, I remember just thinking, Oh, well, we're not going to have the life I thought we were going to have right like like and then over time that you realize that diabetes isn't as difficult as you imagined it's going to be hopefully you get some things figured out. And that it's not. It's not. I don't know, for us at least it's not like somebody chained to art into a post and we couldn't get her off again. You know, we had to just live our life here in this little space. But it still is true that we're not living the life that like when Arden came out and we were like look, we have a baby like in our symbol. You know what I mean? We're holding the baby up and on the hill. This is not my fault was gonna happen. And so you I think that's the loss. I think, I don't know what you think, though, because you were diagnosed at a different time and a different age.

Jennifer Smith, CDE 5:10
I was. And

Unknown Speaker 5:14
I don't, I

Jennifer Smith, CDE 5:15
don't know that I so much had a sense of loss as a sense of significant change. When I was diagnosed in, in the hospital, the nurse educator, was very quick to tell me, I could do mostly anything that I wanted to do. What she told me I couldn't do, she said was very limited. And boiled down to essentially being was something like a bus driver, a pilot, and I couldn't be in the military. She's like, so think of all the things that you really liked doing, and might want to do at this, you know, age that you're at, and realize that you can still do all of these things. And I was like, Well, I probably was never I was not thinking about being a pilot. I wasn't thinking about being a bus driver, or, you know, whatever. So I just felt like, okay, I guess I just have to do these additional things. So my personal sense wasn't so much of a, obviously, I didn't feel guilty. I mean, I didn't have anything to feel guilty about, I'd have to ask my mom, if she had any guilt, or my dad felt any they'd never voiced it if they if they did. But that guilt and sense of loss, I hear a lot of that in the families that I work with. And it it can stick around.

Scott Benner 6:47
Yeah. So Yeah. For me, I was a stay at home dad at that point. And they, we pretty quickly, even though we didn't understand the link between coxsackievirus and maybe being diagnosed. And even at the moment, in the beginning, I didn't understand that Arden had, you know, markers that made her more likely to get type one, two, I didn't understand any of that at that time, right. But I did see, anecdotally she was sick, she had this Coxsackie virus, and now she has diabetes. And I beat myself up pretty hard about that. Because I kept thinking, like, Did I not wash your hands? Did I not wash my hands?

Jennifer Smith, CDE 7:25
Did I expose her some way that could have been prevented? Kept thinking

Scott Benner 7:29
I took her to the wrong place. Like, like, did I get in my car one day and drive to this place for lunch instead of that place for lunch. And that's why Arden got coxsackievirus. And now we're here at the hospital in Virginia, like, you know, and as it's crazy, because it's twofold. It's not something you can control. And it's obviously not something you have vision for that you could have not done. But yet there's that part of your brain that goes if you What is it instead of zagged maybe this didn't happen. And it's hard not to feel that it's almost like you're gonna have a car accident and think if I would have just left 30 seconds sooner this wouldn't have happened. Yes. You know, absolutely.

Unknown Speaker 8:08
Yes. I've only ever had

Jennifer Smith, CDE 8:10
one car accident in my life. I was coming home from from college and the the roads were clear. Except you know what black ice is? Right? Yes. So driving home. And instead of taking the highway highway, I took a road that cut some of my time off. And it was more of like, let's call it a country road, right? I mean, it was paved. It wasn't like weird back country or anything, right. But I had this little renewal Alliance. That was my very first car. The back tires hit this patch that I thought was snow because it was like lightly covered. And I dashed like across the other side of the street and across the ditch. I hit a mailbox and I ended up in somebody's backyard. Wow. So yes, I did. And at that point, I was like, Well, how could I just like, slow down when I saw that snowy patch in the road, knowing Wisconsin weather and whatever, but you can't go back just have to be like, Okay, now I'm more aware at this point, I realized

Scott Benner 9:14
that you'll black ice out of context. When Kelly and I were very young, she would tell me all the time, be careful of black ice. And one day we were driving. And I just started to wiggle the steering wheel and I yell black ice and she and me and jokes are no wondering how we're together. How she didn't just like say like pull over and let me out now You idiot. I've done you know, it's funny. You were talking about the things that the doctor told you or the the educator told you you couldn't do and you're like, Well, no problem. I don't want to be these things. Anyway. Have you ever heard the lady that came on the show whose husband was a fighter pilot, I think and the person told her kid when the kid was diagnosed, don't worry, the only thing you can't do is fly a jet. And it's the only thing the kid wanted to do because that doesn't you know And of course, you know, I think even in that conversation, the woman's like that poor lady like she was like, so sure she was gonna reinforce to my kid that you can do anything. But there's this one simple thing you can't do,

Jennifer Smith, CDE 10:13
you can't do. And that's exactly what it was. Yeah, they wanted to know, so.

Scott Benner 10:16
So it takes me into these next couple of statements, people said, I really needed a lot of hope in the early days. And that is what people are trying to do. And they say, Don't worry, there's only three things you you know, etc, or you'll live a normal life. Just have to count your I think, I think, oddly, that so much of the poor management information that people get in the beginning stems from someone trying to be kind to them. Does that make sense? Because, like, Don't worry, your carbs and do it like they're trying to make it seem easy? Yes. Right. And maybe that's the maybe that's the only thing you can do in that spot? I don't know.

Jennifer Smith, CDE 10:58
I know, I would agree is and especially boils down to the one comment that, I think is it's hard to understand, once you get further into understanding management is the food tide one, you can just you can eat anything, just take your insulin, right. And that is, it's a way to tell somebody, not much has to change. Look, you can keep doing everything that you have been doing. You have to just add these little extras in to the picture. And there's supposed to be a sense of relief, like thank goodness, I can keep, you know, eating whatever it was for lunch that I love to eat. But it doesn't take away from the feeling of the additional things that are really big additional things that we're teaching somebody they now have to do.

Scott Benner 11:58
These next couple of statements. Kind of they kind of hinged together a little bit. This one person said they kept hoping the doctors were wrong. Like they sent them home. I hear that a lot from people. I only went through it for a day. And I know Arden had some sort of crazy honeymoon Day, which I look back now and think probably wasn't even a honeymoon. She just really just didn't need insulin. This one. Right, right. Like they were wrong. And I know they were wrong. I immediately was I called my friend who's her pediatrician. I was like, Hey, she hasn't needed insulin all day. I think they're wrong. And he was so sad. He was like, oh, Scott, like she has. She has type one. She's he's like this will change. Like, just keep watching. You know? Yeah. There's that. And there's this other part here. This person said that there was so much confusion in the doctor's office. And looking back the way she sees it is they weren't 1,000% Sure the kid had diabetes, but they were sure. And she said I just kept seeing the medical people looking at each other and nodding and kind of like talking to each other with their faces, but not saying anything out loud to me. She said she found it very scary. Like what is in that space?

Jennifer Smith, CDE 13:12
And scary in terms of? Are they confused? Are they actually the right people that I should be talking to? I mean, really, you don't want a confused? Look, or these exchanges of eye movement, facial expression between what you're thinking is an educated professional to get an opinion or a diagnosis from you just want the direct information. Tell me what you think it is. What are you going to do to prove that it is or is not this? Just be honest,

Scott Benner 13:50
it's super interesting that I'm going to tell you something personal has nothing to do with diabetes. My mom's blood pressure started to go up a few days ago. So I get a message from her. Hey, Scott, my blood pressure has been high the last couple of days. I call the nurse where she's living and talking to the nurse. And I said, Hey, my mom's blood pressure has been high for four days. Now, what are we doing? And she said, All the doctors gave her a little more medication. We're waiting to see if that worked. And I was like, Well, what else are we doing? You know, are we just gonna keep medicating or until you know, it's like, and she says, I want to get this word for word. She says, Well, your mom has a heart condition. And those don't get better. They just get worse. And all I could think was what in the hell are you thinking saying that to me? Like, like, Hey, you don't know me? Like I took it. I was like, Yeah, I know. Like, but like, that doesn't mean we're giving up on her right? Like she could see the cardiologists couldn't see. But all I could think afterwards was like, the lack of bedside manner. In that statement is fascinating. Absolutely. He was like, hey, what do you want us to do? That's right. What? Something? Could you do something? You know, it's just it was I just couldn't believe that it occurred to her to speak like that.

Jennifer Smith, CDE 15:11
Absolutely. And I think what we've lost actually, not everybody, but I think what there is a loss of in healthcare is a sense of being human. Right? It's a sense of, how would I want this presented to me? Yeah, imagine you're the person sitting there. And I think doctors, you know, and or other clinicians, not just doctors in general, but other clinicians have become so very just blunt, for lack of a better word about this, is it? And no, it's not going to get better. Well, you may want that information eventually. And you may actually sort of know that, you may understand that as an adult, especially, but to have somebody so very cut and dry be like, Nope, this is it. This is, this isn't going to get any better. And we've put a little bit of empathy in that rather than just being so

Scott Benner 16:15
yeah, Jenny, I don't want her to lie to me. But oh, there had to have been a few better ways to say,

Jennifer Smith, CDE 16:23
I mean, even to be able to say, well, we're going to use these types of medications. And as you understand the medications, we may need to titrate we may need to change them. As things change with this type of a health condition. We do know that it doesn't typically heal. And so we're going to have to try things to keep your mom comfortable to keep her feeling well enough, but it will progress. Yeah, I mean, I think that was much nicer.

Scott Benner 16:52
No kidding. I fascinate anyway, so there's a balance between being told the truth and being slapped in the face with some horror, there's better ways to talk about and I don't, there's one,

Jennifer Smith, CDE 17:06
I think, as you say, slapped in the face, kind of with a diagnosis, oftentimes, in a very immersive, you know, emergency type of diagnosis for type one. Many times it's not that somebody's caught symptoms early enough and just come in to the pedes office or to their typical primary care doctor and said, Yeah, I'm not feeling so great. Could we, you do some tests and have some discussion and whatever many times it's very emergent. And then like mine, I went to the emergency room, and I was right there when the doctor told my mom and myself what was wrong? Yeah, there was no like, time in a nice room someplace with like birds outside the

Scott Benner 17:50
human. That's all like, just yeah, that's all I'm looking for from anybody. I'm going to read this person statements pretty big.

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I felt an incredible grief, we had no family history of diabetes, it was a surprise. And I was extremely scared on the way from the urgent care to the hospital, following an ambulance that my daughter was in. Or excuse me, followed by her ambulance ride. My daughter asked what diabetes was. And she said I was like, it's sort of like being allergic to sugar and you need shots. I didn't know a lot. She said she said I wept all night. When she wasn't looking, I thought I can't do this, I really just can't do this. She said I wanted to I wanted someone to come and give me a hug to validate my feelings and my fears, but also that told me that this was going to be okay, that she could live a great life. And that I would be able to do it. A lot of parents have learned to manage well. And you can too, she said that I would have been would have been great if somebody could have said that to me. She can still do everything you hope, etc, and so on, I would have liked someone to tell me that the next few days were going to be hard. And that it would involve sleep deprivation, it would have felt good to know that I could have done it one step at a time, maybe one day at a time that I could have found a Facebook group that I could have shared my struggles with somebody else that somebody else might have known the difference. Sure, yeah.

Jennifer Smith, CDE 23:12
And I think some of that also ties into the rapid nature of discharge upon a diagnosis like this. I mean, in today's world, unless, unless there's something really detrimental within that diagnosis. And they really have to keep you for many, many, many days. Most often. It's an in you might be there one two nights, and you are out and you get rapid fire information. First you get a diagnosis that you had no idea even what it was many times, and now you're getting education, if you will, and you're getting information about all of these things that you're going to have to do again, the factors of life changing, become like a quick like knock on the head. Yeah, here you go. All these things. You know, when I I think that when I was diagnosed, I was in the hospital for an entire week. And day after day, there were new things brought in different pieces of education in a nature that I could swallow and my parents could swallow. Because it wasn't all rapid fire.

Scott Benner 24:24
Yeah. I have a note from a person that just I just randomly got this note a couple days ago and just says Hey, Scott, thanks for everything. You've helped me more in two days than anyone else helped me in the last 20 years. And what I responded back to her was I was like, well, that's really wonderful. Thank you. I appreciate that. I'm glad that the podcast is helping you. But I didn't have to tell you those things while you were sitting in the hospital. And it still felt like somebody hit you in the head with a frying pan. Yeah, I got to tell you when you were relaxed and at home and and I think in

Jennifer Smith, CDE 24:55
a different way though, like there's a slap in the face with something that You never expected again, a type one diagnosis or a type two diagnosis or you know, whatever. But then there's a slap in the face kind of with, well Darn, this information spin around. Why didn't I have access to it? Why did nobody told me about this? Nobody told me I could do this way, or use this product or whatever. So I think they're, they're similar but different enough that you've been already navigating through something. And now you're a little bit more irritated.

Unknown Speaker 25:32
What? Why didn't nobody tell me that?

Scott Benner 25:34
Hers has another layer. And that definitely is that, you know, if she would have found the podcast, you know, six weeks after she was diagnosed, she'd be like, Alright, cool. Six weeks, I didn't understand what I was in 20 years is hard. Because you start doing that reverse math, you're like, I've done damage to my body now that I can't get out of, and you're telling me this all existed? And just no one told me about it? Right. So it's a strange balance. How do I explain type one diabetes to a three year old? And I mean, I don't know. I don't think you can. What

Jennifer Smith, CDE 26:07
did you do with I mean, Arden was to right? Yeah, she was how did you guys talk to her about it?

Scott Benner 26:13
You look her in the face. And you say, I'm sorry, I have to give you this needle. And you try not to cry? Like, I mean, what else are you gonna do? Right? Like, it's, she's two or three years old in this in this person's situation? What are you going to say? Like, correct me? What are they going to understand?

Jennifer Smith, CDE 26:33
Hi. And that's where you have to look at is the understand level. Yeah.

Scott Benner 26:37
I mean, eventually, we told her, there's a thing inside of her body that makes the stuff inside of this needle. It's not making it anymore, and she needs it. And so we're gonna give it to her this way. And she then saw the needle, put a big smile on her face and ran away from us, just like, took off. She just told me. Two nights ago, we were sitting around online, googling what are people's biggest fears. And guessing people's top fears, like by state by country was actually kind of interesting. Yeah. And she said, Oh, this is one of mine. And so we're all like, trying to guess what it is. And she's like needles, she's like, I'm afraid of needles. She's like, I really don't like needles. And I'm gonna try to get on the podcast and to talk about it. But Arden's only ever given herself one shot. One. And it was you did

Jennifer Smith, CDE 27:30
it for such a long time,

Scott Benner 27:31
I switched to a pom pom, and we switched to a pump when she was four. And she gave herself one recently, because she's going to school and I was like, listen, you're going to hit a spot at some point, while you're at school where you're gonna have to clear something, you're gonna need an injection here, do this one. And I'll let her tell the story. But she, I think she took the better part of 90 minutes to put the to put the needle on her thigh. But she had to go into a private room by herself and like psych yourself up to do it. But if you take her she'd gets blood draws constantly sure hates them, but has to watch it happen.

Jennifer Smith, CDE 28:06
And somebody else is doing it though. Yes.

Scott Benner 28:09
But she stares at it. She oh my god and look away she goes, I need to see it happen. I'm like, All right. I don't even know how to explain that. That thing, right? So it's not just as simple as nobody wants to get stuck with a needle, because nobody wants to get stuck with a needle. But she really, she hates it. You know, but how do you explain to a three year old? I don't know. Like, I think the best thing I can say is that after a while, it just becomes commonplace. And a three year old doesn't remember, five months ago, the first day you were like your Give me your arm, you know? Right?

Jennifer Smith, CDE 28:46
Well, and as you teach kids, anything, I think, I think parents who are very verbal and explanation about we're going to do this, because of this, like, I'm gonna go outside and I'm gonna mow the lawn, because the lawn is long, and it needs to be caught. And, you know, we don't want

Unknown Speaker 29:07
bugs growing in our backyard, or whatever it is, I mean, at a level that a

Jennifer Smith, CDE 29:12
kid can understand. And then you continue to progress through. As kids grow, you keep explaining more and more. And oftentimes, they end up coming back to you with the endless flood of questions that over the age of like, four comes into the picture, right? And as they ask more, you get a little bit deeper in, I guess, explanation. You have to start at a really like, dumbed down level. Yeah.

Scott Benner 29:36
And you build on it. You really do because I mean, even even saying, There's something inside of your body that makes this stuff but it's not working anymore. I don't even know if there's context for that. Really. There's stuff inside my body. You don't I mean, like what like this is because for a young person, you're you you're this the village that you see out front you're not your intestines and You know,

Jennifer Smith, CDE 30:00
if the child is interested in books already, and you read often, there are a lot of really good kid based books that are all different levels of knowledge to be able to start with an explanation. And I guess I would probably start there. Yeah.

Scott Benner 30:18
And I think understanding that it's not like you're, you're not talking to a friend, you're not going to explain to them right now. And they're just gonna get it. It's going to be like a process. And, you know, you have to be patient with it. This person said, will my child live a normal life? I know the answer to that now, but I absolutely did not know then. So we covered that. This person said what you said earlier that the simplest advice is still incredibly difficult to comprehend in the early days. It would have been great if somebody would have explained a honeymoon to me. You know that there's one. How about this one? Will I ever sleep again, they just talked about checking every two hours with no end date, and did not discuss CGM with me at the time.

Jennifer Smith, CDE 31:04
That's where with today's technology a you as the parent or caregiver, you go back and you say, You do realize that not only have you loaded me with this thing, not you, you know, by decision, but you've given me this thing to now help me manage for my child, you're telling me you have to do this, I know that this technology is available, you will risk you will write a prescription for this, right? I mean, you will give this to me, there is no reason not to. If I have the ability to sleep, I can make better decisions with all the things you told me to keep track of in the day for my child,

Scott Benner 31:40
but you were thinking about what she said like you're gonna check every two hours. There we go overnight, though. Yeah. Well, what? You know, right. And then there's some doctors who used to say, Don't worry, like, it's very important to check during the day, but overnight, don't worry about it, as well. Because that's what I was told. I was like, how the hell is that reasonable? Like, they told you to not check overnight? Overnight was fine. But during the day, you need to check. And I was like, yeah, and then I stopped. And I didn't do that. And that's how I Well, first I listened to them. And then eventually, I was like, wait a minute, that doesn't make sense. And then, you know, that's how I learned that I was putting Arden to bed at like 180 blood sugar. She was waking up at 90, and I thought I was doing great. I checked overnight and saw she was like 58 At some points.

Jennifer Smith, CDE 32:27
Right? I mean, that's very similar to being like, your newborn baby needs to nurse every two to three hours or get a bottle every two to three hours. But at night, go ahead and sleep about it. They'll be fine until you wake up at nine o'clock the next morning.

Scott Benner 32:44
Exactly right. And it freaked me out. I when I figured it out. It would have been nice. This person says if a medical person would have just talked to me like a human being. And this next person says the favorite thing that an endocrinologist told me early on you see this, people say this all the time online. But there's two things you can no longer eat poison and poisoned cupcakes is what they think. Yeah. It made us realize we could do what we needed to do and succeed. The mental load of it all. For me. My My son was for a diagnosis. And I was able to work from home with him until we became more stable with our sugars. And that helped her with her the mental strain just taking another thing away in life and being able to focus more on that we got super lucky. I was a stay at home dad already

Jennifer Smith, CDE 33:33
already. Yeah. When I think about especially in this I have a number of single parents, you know, single really single like there is no other person father or mother caregiver involved. And or just the sharing families, right? Sometimes you're with mom, sometimes your dad, sometimes you're the grandma and grandpa or whatever it might be. And in a diagnosis setting where there really is only one caregiver. Now you have added when you talk about things changing, you've added another layer of change that they may already be pretty overwhelmed.

Scott Benner 34:13
Yeah. Yeah, no, no, it's not everybody is in my situation where I was like, Oh, well, I don't have a job. I have plenty of time to figure this out. Right. You know, I tell people all the time. They're they, they thank me for the podcast. I was like, thank my wife, like she made enough money when we were younger that I didn't have to work and that's part of my free time. It was around figuring out diabetes. I wouldn't call it free time like you think of but you know,

Jennifer Smith, CDE 34:37
right. Like you're baking cupcakes for the neighborhood.

Scott Benner 34:42
Oh, you know what I'll do with my free time. But I mean, I wasn't at work, where I had to disconnect myself for my family's problems so I could get a thing done so I can collect a paycheck. You know. This person said I needed somebody to tell me it wasn't my fault repeatedly. In the beginning I'm here, this is interesting. We just talked about needle fear. And so I kind of want to come back around to this for a second. This person saying needle fear was really tough for my kid. They figured it out. It's no big deal now, etc. There's this thing that I did that I believe is worked for us. And I think it's worth people paying attention to because in the beginning, you can do this thing. Where you're like, well, we'll use the numbing cream. We'll get a buzzy, we're gonna do this. We'll do that. We're gonna make it easier. Oh, it's time for your shot. Not yet. Okay, buddy. Let's wait like I am more of the School of like, draw the insulin, stick it in push the thing over with like, we're not going to like this one way or the other? Yeah, let me draw it out. Let's not draw it out. I just I learned that lesson very early on when I think my wife and I spent an hour and a half in the middle of the night trying to get my son to swallow a pill. You just like swallow the pill? Just take the please take the pill. I don't want to hold on. Wait a minute, wait a minute, wait a minute, you know, like it's the it was that I'm just aren't used to wait a minute. I was like, God, let's just do it fast and get it over with. Yep. And just get it done. I mean, you'll find what works for you. But I think dragging it out, just extends the panic because it goes away when it's over. It does. Yeah,

Jennifer Smith, CDE 36:22
really. It's even like an argument. You know, with a five year old, essentially, you're having an argument. And you can tell that you're continuing to get more irritated, because they're just not listening to you. It's better as the adult to literally just be like, I'm stepping away. I've told you what needs to be told to you. We're not doing it for this reason. And I'm gonna go over here. And you can just sit because there's, you know, so just deal with it. Now, get it over with and move on. You also have a lot more time in your day.

Scott Benner 36:54
This one person says I was 39 when I was diagnosed, and I kept thinking, What do I do wrong? And she said, or he said, Excuse me one or the other. I still, they said that their mental health is still not where it was before they were diagnosed. And they, they just don't know what to do about it. And speaking of not knowing what to do about it, this next person says, How do you deal with overwhelming emotions? I've never had them before. And now here they are, I don't know what to do. And I don't know where to get help and do the whole thing.

Jennifer Smith, CDE 37:28
Yeah. I mean, the the mental health piece of diabetes management, both for caregivers, as well as the person living with diabetes, thankfully, has gotten more attention, if you will, in the past couple of years. But I think it's still well at the bottom of pile in terms of discussion and asking, how are you doing with all of this? You know, what kinds of things are you doing? To to have joy and to still feel good and to do as much as you can back to the normal, whatever normal is, right? I mean, there are, there are quite a number of mindfulness and meditative types of things that you can kind of do to get back to letting your brain at least work through things in a way that doesn't make you continue to feel stressed all the time. But you have to look for the resources, right? Nobody hands something to you like that at diagnosis.

Scott Benner 38:34
Well, there's a question I asked a lot when I'm interviewing people, and they have really heavy stories, you know, people are like, five, six metal conditions, like a lot of stuff going on, whatever. And they get done. And I try to remember to say to them, Hey, are you okay? You know, like, because I also try to make my interviews fun, and like you're talking about these really serious things and to keep it light hearted. And then I'm like, are you alright? I'm frequently surprised by the number of people who don't know if they're okay or not, or not. They can't say they it's not that they don't want to tell you. They're not okay. It's that they don't even consider if they're okay. Like it's not a concern of theirs. They can I guess they compartmentalize everything to the degree where they don't ever consider Yeah, at all. Yeah, you know, I've had people I'm like, Just take your time. Think about it. Are you alright? They can't say, you know, and that's, that, to me seems like emotion. They're not okay. Yeah. And they're not dealt with emotions. They don't even know how to like, put words to them, you know, right. Right.

Jennifer Smith, CDE 39:41
And I think some of that might come from trying to bring down emotion around diabetes management make right to be able to just see the numbers as numbers and information and be able to navigate through them and move on right. But a lot of that is taking A piece out, that is part of being a human. And, yeah, it's okay. It can go too far in terms of I don't really even know how to analyze whether I feel good or not.

Scott Benner 40:12
Or I don't think I should think about this because I don't, I might fall apart if I think about it. Right. And so everybody's just trying to be I think you're right. Like, there's whatever your situation is. And I'm certainly not, I mean, some people situations are much more manageable than others. But that is your situation. It's not, it's not changing. So you have to accept it, and then put your head down and keep going. And I guess maybe for some people putting their head down and keep going is I can't think about this. Because, hey, because it's yeah, I'm 39 years old, and my pancreas stopped working. Are you okay? I think the answer is no, I'm not okay. This is terrible. You know, like, and there's no, the doctor said they can't fix it. And it's not going to go away. So how am I supposed to be okay. And the answer is, I think you have to change your perspective about what Okay, is. That makes sense? Yeah. I mean, because in the beginning of life, everything just feels free. You know, they mean, like, I'm going to do this and it's going to be fine. And if it doesn't, I'll go do something else. It doesn't matter to me, it doesn't really hit you the first time till school when you're if if the idea of getting good grades is important to you, because then suddenly you're like, Oh, I'm being measured. Right? Yeah. And then you become an adult, and you get measured again, because you want to stay safe and secure and fed. So you got to find a job. And then oh, everything's not so easy. But then you fall into that you're like, hey, all right. I'm an adult, I'm doing it. I got a place to live. Television works. You know what I mean? Like, my vitamins, I'm good. Here's the next problem. And it's medical. And then No, no, it's not okay. I didn't want this to happen to me. I mean, it's

Jennifer Smith, CDE 41:56
well, and medical, I think is really, it's one that may or may not have a quick solution to it, or a fix to it at all. It's something that you learn to navigate with. But it's not like, I'm not okay, because my tire went flat on my car. Okay, well, this is a situational not okay. This isn't a long term. I need to learn how to accept and move forward and realize that this will be here. I know that some days are going to be great. Like I want them and other days are going to be karate. Yeah. And, yeah,

Scott Benner 42:38
I think it's important to know that you are going to go through a lot of the stages of grief, which you know, you can look up online, there's different doctors who think of them differently, but you know, shock disbelief, denial, bargaining, guilt, anger, depression, acceptance, hope, like that stuff is, it's all going to hit you. And it should This one's interesting. Do you know why they call it diabetes? Do you have any idea I'm asking you if you know, like, where they

Jennifer Smith, CDE 43:01
come from the light, I mean, diabetes in and of itself. There are several, obviously, kinds of diabetes in terms of the end like the diabetes we have is diabetes mellitus or mellitus or, you know, whatever how you say that, that last term. In terms of just diabetes. It there are Latin terms, essentially, that go along with it, which is the reason

Scott Benner 43:26
this person statement makes me think that it's, we should call it live a VDS. Because she said her six year old said, why is it that I have babies, that's how the kid heard it. So she thought I'm gonna die, because I got diabetes. She's, she's six. And you know,

Jennifer Smith, CDE 43:46
it is kind of cruddy me. And actually, it's something my husband said to me a long time ago. And we're like doing the diabetes anniversary of their diversity or whatever he's like, why are we not calling this livability? Like, you don't die right away, like, in fact, you, you move forward? Along with it. You're living so what's the, you know, worse than I'm like, Well, here's the Latin meters. Yes, exactly. So

Scott Benner 44:12
it's, I guess, Isabel did a very good job grouping these questions together for me, because I just keep thinking, Wow, it's amazing. They all just relate to each other as I go down the list, but now I realize she did this for me. So that was nice, because this next one is not pleasant. But this list this person said, my baby was diagnosed, and everything felt like that to me. She's like, well, is sugar gonna kill her? Am I gonna kill her with insulin? Is this pump gonna kill her? Will this CGM kill her? She said death just rang through her head in the beginning. Yes, it's a it's a it's there's probably a good spot here for us to point out that Jenny's living very well. diabetes and so are a lot of other people.

Jennifer Smith, CDE 44:54
Many, many other people absolutely are.

Unknown Speaker 44:57
Yes,

Scott Benner 44:58
but I we're doing Next as part of this series, because these are very likely the things that are going to run through your head when this all happens, and I think that should you not go find a therapist, or should you not go find an online group, that it would be very helpful to know that there was another person who thought, I'm gonna kill everybody. I thought I was gonna call Arden constantly. In the beginning, everything I did, I was like, this is definitely gonna kill her. Like, just, you know,

Unknown Speaker 45:27
I'm gonna give this to her. And I don't know that it's right, and I'm gonna snack and well,

Scott Benner 45:33
lunch wasn't lunch anymore. Lunch was just like, I wonder if I didn't screw this up is how it felt. You know? And then, you know, a couple of hours later, she was still looking at me. I was like, hey,

Unknown Speaker 45:43
yay, was when I didn't. Yeah, it isn't. You know,

Jennifer Smith, CDE 45:48
I haven't thought about it in quite a while though. The question about the word. diabetes, I really haven't. I mean, the the first part of it has nothing to do with death at all Daya. diabetes really just means a passing through or a siphoning right. And mellitus or mellitus means sweet. So it's they tested eons ago, when we had nothing. Doctors would literally dip their fingers in like a person's urine and taste it. And if it was sweet, they knew that they had this like sugar sweats, sugar sickness, or honey sickness.

Scott Benner 46:24
You also knew your doctor really cared about you. Because taste in

Jennifer Smith, CDE 46:28
my urine. Urine is pretty sterile. So unless there's like Aki, you know, whatever,

Scott Benner 46:33
how about I don't care, Jimmy, I would not have been a good doctor. In that moment, I would have been like, listen, we could taste this to see if you have diabetes, but I gotta be honest, I'm not doing it. Go find a friend.

Unknown Speaker 46:45
There's lots of stuff that could be in. Good Doctor was like, let's taste this and see what's going on. He signed up for

Scott Benner 46:52
that. This person said to be very careful that they stopped taking care of themselves when they were diagnosed. She said I could start, I got to the point where I could count the times I was showering because I I was just not taking care of myself anymore. She's like, I was fighting with my insurance company, calling companies begging nurses to call me back. She said I was distraught and overwhelmed. And that's where the that's how the grief hit her. She kind of just started to let go of like everyday activities that you would do.

Jennifer Smith, CDE 47:25
Right better now. And I think it brings it in, I mean, that that brings in a layer in terms of what she mentioned, things like calling insurance and fighting for things, right? It brings in a piece to that management, that is the addition of more, right more things to keep track of and do. It's not well, my you know, medication that I take for whatever it is, I pick it up once a month, and it's okay. And I don't really have to think about it. And I want to fight the insurance to cover it and whatever. But all these parts that ended up coming along with diabetes management in today's world, especially mean, you may have to have more interaction, at times, not necessarily every day, but more interaction at times, and especially in the very beginning. When you are asking your insurance to now Hey, cover this and cover this. And we've got this new diagnosis, and they've got all of these protocols and things that they have to follow within their organization. There's a lot of work upfront,

Scott Benner 48:32
ya know, I've yelled the F word into a phone a lot of times the beginning Oh, yeah. I don't know that I've ever used no word. But I've heard Yeah, I used to find that it moves things along very nicely.

Unknown Speaker 48:46
I probably said them after I was off the

Scott Benner 48:49

i I'm assuming that this customer service rep would say that they don't feel like they're in a safe space. Now I'd hang up the phone. But back then I was like, Hey, you don't know how hard this is? Let's go. You know, it's just interesting. Consequences are real. But I couldn't let that stop me from living my life, the balance. I think that not being a person with diabetes, I can't be sure. But I think that's got to be a bargain that everyone with diabetes makes every day of their life. Like Absolutely. Right.

Jennifer Smith, CDE 49:24
Absolutely. With with everything. I mean, the consequences. And they're not necessarily saying the consequences are real in terms of, let's say bad versus good. I don't love those words. But there can always be a good consequence to your choice. There could also be what you really didn't plan on happening, because it just worked out the other way. Right. So

Scott Benner 49:47
this person says, the fear of complications for my daughter was my biggest worry. And that's all I saw when I look things up online. I have to tell you, my brain works that way too. Like, you know, you have an autoimmune disease, there's a likelihood you might have another one at some point. At what point your brain

Jennifer Smith, CDE 50:08
goes to the world what else could be wrong? Yeah, the worst What else could happen because of this? Yeah.

Scott Benner 50:14
Which by the way, you have to guard against, because you, you have to make sure to look at all your possibilities as things are happening over your lifetime, but do not just see diabetes all the time, too. I see people that happens them all the time, like, hey, my kids got a headache. What's this got to do with diabetes? I was like, I mean, maybe, yeah, maybe the kids just got a headache. But listen, I don't know is your blood sugar bouncing around all over the place? They've been low for a while high for a while. If those things decide people get headaches, still people with diabetes, get headaches and have nothing to do with their headaches. And it's hard sometimes to separate them. You know,

Jennifer Smith, CDE 50:50
and then in kids in terms of headaches, I think a big one is hydration. A lot of the time, quite honestly. And yes, you might see some blood sugars that look funny to hydration being a big piece of overall management. But headaches just alone. Oftentimes, it's drink some water,

Scott Benner 51:07
I want to I want to offer some comfort to the person who wrote this, because they said that they remember thinking that their son would grow up to hate them. Because she saw what she was doing taking care of him as hurting him. I don't think that's how it gets remembered. You don't know? Yeah. I mean, I guess it could, but

Jennifer Smith, CDE 51:31
it could I think in again, that's where some of the discussion goes along with what you're doing, using less of your own, like inner thought as you work through doing an injection or changing a pump site or putting, you know, a new sensor on or all those kinds of things that parents are doing. If you talk through it, like and verbalize it rather than just think it through. Kids absorb. And they start to make connections. And with that, I would expect that the child who's hearing their parents say, we have to do this, and I'm going to do this, and this is why I'm doing it this way. They see it more from a standpoint of caring, rather than the parent. Like being me and yeah,

Scott Benner 52:17
no, I think that hopefully, over time, it shakes out that way. Yeah. This next one, I learned the most important thing I learned from the podcast is that non diabetic blood sugars are actually possible. And no one told me that at first and I did not believe it until I found the podcast. So I'm very glad that that happened for them. I guess they made it on to the Pro Tip series. But that's that's lovely that that for somebody because I do think that when expectations start getting set up and they start telling you like a seven a one C is fine. Don't worry about it, you might start thinking like, oh, I guess I guess what I used to have with my pancreas isn't gonna happen anymore. But it can. Just a quick one lady said, I was told that in the beginning, it will be hard. And I thought in my mind, that's probably means like, two, three weeks. And not a couple of years or do this for three weeks. I got that. It'll be okay. If it's only going to be three weeks. That'll be okay. Yeah, so there's one on here. There's not there's one that's not on here. And I know we're kind of getting up on your time. Am I right? We're okay. Because I'm gonna tell you right now, this list goes on. And on and on and on. Like, I think we've hit the big, the big, you know, ideas, ones, but here's one that just isn't here. And this is all this is perspective from me, because I'm not a I'm not a religious person. But I see people talking online all the time. Why did God do this to us? I see a lot, or this is going to be okay. Because God wouldn't give me something I can't handle. And so I don't have a lot of religious perspective. And I and I understand that. That's how some people might see these things, which is, you know, I have no qualms with, but what I can see from an outsider's perspective is that sometimes sometimes I've seen people not pay as close attention to their health, because they think God's got it. If that's the way to put it, I don't know exactly. And if you believe in God, and you think he's on your side, or she's on your side, or whatever you think I'm down with that. But just remember God is not going to Bolus when your kid is 330 You know, you need to take care of these things. There was just another story recently, I think it was from Australia where these people were put in jail because they let their kids die. Yeah, because they said that God was going to take care of him. And yeah, you know, I just, it's not a commentary about religion to me, it's just you have to realize you're in a, you know, a unique situation that is not going to be in any way taken care of without you facilitating it.

Jennifer Smith, CDE 55:20
Correct. And I think the bigger thing in, in whatever type of faith that you may have. Most, most religions, most faiths have an underlying to God or logos or whatever you believe in kind of out there. It gives us movement forward and information. And the better we utilize that information for the, for the greater good, or for our own health or whatever, we have to know that that knowledge, you know, is coming from somewhere, right. And so I don't think if there is a God, there would be, and I believe in God. But I don't I don't think that God dictates this person gets cancer, this person gets diabetes, this person gets heart disease, that that type of being if there is, isn't so cute into person to person on a grander scale, we've been given free choice, right? We've been given the ability to use our brain to use what we know how to do, or I don't believe that there would be doctors and engineers and plumbers, and, you know, people who are truck drivers or bus drivers or whatever, you know, we've decided along a path. And we are using our brains to make decisions. And one of those things comes in to health management. If you if you have a child or someone you love, you have to do what is been put out there already. To be two years. Right. I mean, that's that's what I believe. I think I in particular, from my faith base, I truly believe there was a reason that I have type one. I believe it's because I had a, I guess, a destiny, if you will, to be able to use what I've been given to help other people. That's what I believe. And I don't know. So I hope I'm Hope I'm achieving that.

Scott Benner 57:47
I appreciate your perspective very much, because I honestly don't have one. First of all, I just know that, from my, from my perspective, looking on to other people's lives. There are times that I want to respond and say, Please stop hoping and Bolus, right. Yeah, like, right, please. I hope. Can you pray for my son, not none of us need to pray right now push the button on the thing, make the blood sugar go down, like like, you know, like that, that kind of thing? Right? I just think sometimes that that can get in the way of you making a good decision. And so I'm going to there's a story, I'm going to get it wrong to some degree. I think it's it's something that's been repeated over and over again for years. But guys walking down the street falls in a hole. A doctor passes by the guy shouts up, hey, can I can I get some help here? The doctor writes prescription throws down in the hole. And the guy's like, well, what am I gonna do with this? And then, you know, a priest comes along, and he says, Hey, can I get some help? And the priest writes out a prayer and throws down the hole. And the guy's like, actually can't get out of this hole and a friend of his walks by, and he says, Hey, man, can I get some help? I'm stuck down in this hole. And the friend jumps in with him. And the guy goes, What are you doing? Like now? We're both stuck down here. And he goes, No, no, I've been down here before. And I know the way out. Let me help you. Right. Yeah. So you, you have to accept that help. Right, right. You can't just you can't then you can't just step back and keep saying like, what's the other story right guys lives on a floodplain. And somebody comes by and the news cameras come by and they say, Hey, aren't you gonna leave? Man, there's a flood, you gotta go. And the guy's like, no, he's like, you know, gotta get me. And the guys like, I really think you should go there saying you should leave here. And then a little while later, a guy comes by on a boat and says, Hey, man, get in. There's a flood common. Let me get you out of here. And a guy goes, no, no, no, no, you know, like, God's got right. And then eventually the guy's house gets knocked over. He's dead. He looks at God. When he opens his eyes. He goes, what happened, guys, like, like I said, the reporter with a whole bunch of hell, I sent the guy with the boat, you know, I mean, it's an old story, obviously. But you really have to. These are just parables because this is how people's minds work. Correct? Right. So take the help that's offered to you and wouldn't help go to somebody who knows what they're doing. Yeah, excuse me find people who have been through this before. Err how you feel, don't hold your emotions in. Understand you didn't do this guilt is I understand it. But I mean, try to have some long perspective, I find that what helps my guilt more than anything is sometimes when I'm talking to a person who's got autoimmune down their family line forever. The other day, this woman said to me, Oh, my grandmother has she's achy all the time. I don't know if she has Ra. She's like, I'm not sure. But her grandmother was in her 90s. And I thought, okay, that sucks. But she still lived her whole life. You know what I mean? Like she like a long, long life. I think sometimes just seeing that other people do, it takes away a lot of the other stuff. And I also think, Jenny, that understand understanding, I don't think anybody gets out of this thing unscathed. Like, you know, I'm a little, maybe we all are a little jaded, because we know so many people with autoimmune diseases that it feels like everyone has an autoimmune disease some days, right. And I'm sure there are some people walking around who are just free and clear. Nothing's ever happened to them. But I think for the most part, that's not most people. So I don't

Jennifer Smith, CDE 1:01:19
think so either. I think most people have something that is not visible to others, similar enough to diabetes. And the only outward visual in terms of diabetes truly are the devices right? Now, the pumps and the CGM that are very visible to but even that doesn't disclose internally what the person has to go through and manage and take consideration of all day long. So yes, and I loved your little boat, and, you know, the news reporter and being like, hello, hello, something's come in, right? Because that is it. Oftentimes, we, if you really are hoping too much hope is a grand thing. It's wonderful. I, you know, we all have to hope for things. But along the way, we have to take action, in order to get to that point of what we hoped for. You can't just sit back in the launch your chair and be like, well, if it comes to me great, and I really hope that it does. That's

Scott Benner 1:02:31
not really gonna work towards it also work. If you've heard people on this podcast before we have multiple issues. And I'll say to them, If I gave you a magic wand and could make one of these go away, which one would it be? They almost never say diabetes. It's fascinating. Like, I always think like, Hola, definitely gonna say diabetes, and always like, Oh, no, I would rather not have to deal with this or, and I think my point is that even if you have one thing going on in your life, and the guy across the street has one thing, and you think, Oh, his thinks easier than my thing. If you had his thing in five minutes, you'd be like, dammit, my thing, I'll get my thing back, or how do I get rid of this now? Like nothing? I don't know. You know, this sucks. Don't get me wrong. And diabetes is relentless. And it's 24 hours and etc. But there's a way to, there is a way to get through it and not right not have to live with all these feelings. And I think in the beginning, it's hard to imagine that's true. But it really is.

Jennifer Smith, CDE 1:03:24
And I think something around it, too, is actually opening up to the feelings in the beginning and letting yourself feel all those things. You know, the stages of grief, really let yourself work through that. Don't turn it off. Let yourself work through. I feel really horrible. Could I have done something about it? No, I couldn't have changed this. Okay, let's move on. Right? There's there's only so much that you can or you're going to just feel bad forever. I don't want that for anybody was the person

Scott Benner 1:03:58
here that I didn't get through that said every hospital should have a crying room. It's the soundproof room that you can go into the chair in a box of tissues that you just sit there and

Jennifer Smith, CDE 1:04:08
let it out. And garage is a really nice place for

Scott Benner 1:04:12
me. It's like ice cream in the garage in case you're one. Well, thank you very much for doing this course.

Jennifer Smith, CDE 1:04:20
Absolutely. Good. Very good topic. I'll talk to you soon.

Scott Benner 1:04:33
First, I'd like to thank Jenny Smith for coming on the show today and continuing to pour her great knowledge into this podcast. Don't forget you can find Jenny at integrated diabetes.com. And if this is the first bold beginnings episode, you've heard there's a whole series of it, you should go back and find them. Thanks so much to Ian pen from Medtronic. diabetes please go to in pen today.com To get started. And of course the Omni pod five is available at On the pod.com forward slash juice box

I don't want to lie to you. I'm tired. This is my last editing job of the day this episode and so for that reason, I'm not going to say anything else. Just thanks so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. I gotta go to bed