Scott Benner 11/12/21 Scott Benner 11/12/21

#576 Hard T1 Questions from Kids

Erika Forsyth, LMFT is back to answer some difficult questions sent in by children of the listeners.

Erica is a licensed marriage and family therapist who herself has had Type 1 diabetes for over 30 years and who specializes in working with people with diabetes and their families and caregivers—from those newly diagnosed to those experiencing it for decades. She and Scott discuss burnout, emotions surrounding diagnosis, and dealing with diabetes distress and constructive ways to prevent it from impairing one’s function. http://erikaforsyth.com

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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
You are listening to Episode 576 of the Juicebox Podcast

I'm very excited to tell you that Erica Forsyth is back. You may remember Erica from Episode 407 479, or 514. She's been here quite a bit talking about the emotional side of type one diabetes. Erica is a marriage and family therapist. She also has type one, and she's been incredible on this show. Today, Erica will help me tackle a number of incredibly difficult questions that were sent in by children. Please remember, while you're listening 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. If you're a California resident, and you think Erica can help you check her out at Erica forsythe.com. As you may know, I'm on a mission to add as many people to the T one D exchange survey as they possibly can here in November. It's my own little diabetes Awareness month thing I'm doing T one D exchange.org. Forward slash juicebox. US resident who has type one, or is the caregiver of a type one, head over take you less than 10 minutes to fill out the survey. It's amazing, you'll help people you'll have to show. This episode of The Juicebox Podcast is sponsored by trial net, you know trial net, they provide type one diabetes risk screening at no cost to the relatives of people living with type one. I'll tell you all about them a little later in the show, trial net.org. Forward slash juice box. About five months ago, I had what I thought was a good idea. I thought I would do like a defining diabetes series for children based on their questions about diabetes, I thought it was going to be great. So I go on Facebook. And I asked Hey, can you tell me some of the questions that your kids have asked about diabetes. And then what happened next was not what I expected. I am looking at a Facebook thread here that is now 22 weeks old, that has 256 responses in them. One more heartbreaking than the next. And so I didn't know what to do. And I thought I'm gonna do it with Erica. And so I don't know what this is supposed to be. I'm just gonna jump right into it. Okay, and I'm gonna get your top line responses. And I think the conversation will find its way that's my okay. So good. Yes. So I just threw up there. And I said, Hey, do your children ask diabetes related questions that are difficult to answer. And, you know, like, I just thought it would be like, even put up some examples like, well, I have diabetes, the rest of my life. You know, while I still have diabetes, I'm six like that kind of stuff. These are the things that Arden asked me when she was younger. Right? The very first one out of the box. Somebody says, My child has asked me what happens if my blood sugar goes to zero? Mm hmm. And I'm like, so what? So let's just start there and see how far we can get through this. Okay, how valuable is it for children? And at what age to understand the real consequences of them getting too much insulin? And do you run the risk of scaring them about their insulin too?

Erika Forsyth, MFT, LMFT 3:37
I think my first thought is, I wish I knew what age each child when a parent was writing in because I think it's has to be so relevant and appropriate and make it age age appropriate. Right?

Scott Benner 3:51
for you here. Don't worry.

Erika Forsyth, MFT, LMFT 3:52
Okay. Okay. So do you want to tell me do you want me just to guess?

Scott Benner 3:59
They said, they said the child is six years old. Erica, you're breaking up? You're gone? Actually.

Erika Forsyth, MFT, LMFT 4:10
No, I'm here. I'm sure. I didn't press anything.

Scott Benner 4:13
I know you didn't. The system. It booted you like you had a weak signal or something like that. Okay, so sorry about that. So yeah, six years old. What happens if my sugar goes to zero?

Erika Forsyth, MFT, LMFT 4:22
Okay. So I think and keeping it appropriate, and not fair, you know, causing any inappropriate fear, but also you want to create a respect around the insulin. I think if if I were the parent in this, in this response, I would say well, we have all of these precautions and tools to prevent us from going to zero. And that would be the case particularly with you know, the CGM. And I think that the child seems to be so that kind of worst case scenario thinking. So I would just I would start and maybe end there to say we have all these tools to make sure that you don't go to zero. And, and we know what to do when you start to go low when you start to feel, you know, all the symptoms of when you feel low. To prevent that from happening

Scott Benner 5:22
at a certain age, though, don't people deserve to know, what happens if their blood sugar goes to zero? And what how do you figure that out? It's got to be case by case, right?

Erika Forsyth, MFT, LMFT 5:33
Yes, and I don't know. You know, the stats, to be honest around how many people are have hypoglycemic unawareness and end up having seizures end up having to be hospitalized, or even death. And we all know in our community, those are real possibilities. And I would imagine, it's probably a small amount of people who have hypoglycemic and awareness. So I think at some point, I would say, I think maybe maybe closer to 10, when maybe even eight to 10, when children have more understanding of death, they might not understand it completely. But they might start asking questions, if grandparents are dying. I think you can connect it to that developmental understanding of that things that can happen. But that, but not to link it to a to their personal fear that because I think you could you could create a real fear of going low. Yeah. And we want to try and avoid that. Right, right.

Scott Benner 6:45
Oh, also, I would say that you don't want to attach it to their personal success or failure. Like you, you definitely don't want to say to somebody, Hey, listen, here's why you should do a better job because you don't want to die. Like that's, I don't think that's a valuable way to talk to people, generally speaking, correct?

Erika Forsyth, MFT, LMFT 7:01
No fear, fear based motivation, particularly with type one does not work. In terms of, you know, even going the opposite way of you don't want to go high of us, you're gonna go blind. And you don't want to go low. Ross, you're gonna die. I think they know those. Those are, number one, really, it's really rare. And number two, that doesn't, that isn't going to lead to, you know, solid management, blood sugar control, right?

Scott Benner 7:30
Yeah. People don't don't generally do their best thinking when they're in fight or flight mode, correct? Yeah. So here's another one ready? My children who don't have diabetes, always ask me if they're going to get done. Hmm.

Erika Forsyth, MFT, LMFT 7:45
Yes. And I can even share from growing up. I was I was diagnosed first at age 12. Two years, and in between that time, I have a younger brother. And he was approximately four years younger. And I know he was concerned. Two years later, when he was 10, he was diagnosed with type one. And so then, my parents had my sister do the trial net at the time, I think it was still called trial net. This was many years ago, 30 plus years ago. And she did not have any of the antibodies. But I know that that was a certain, you know, it is a very real fear for siblings who do not have type one, particularly when they see how it can change your life at particularly in the beginning of diagnosis. And so the what was the specific question, what do I tell my children?

Scott Benner 8:41
Well, let's just I mean, you don't have to tell her what to tell them. What would you do? Because I'll tell you right now that my answered that question when it was asked of me with I hope not, but they're statistically you have a elevated chance because Arden has diabetes, but I hope it doesn't happen to you. And then I took my son to trial on that.

Erika Forsyth, MFT, LMFT 9:00
Yeah, yeah. Yeah. So I mean, I think we we can't make any guarantees to our children, right, that they're never going to catch a cold or they're never going to break an arm. So I think when you know, am I is this something bad gonna happen to me in life in general? I think we want to tell our children well, we hope not, but we're gonna do our best to you know, let you live a life of freedom and enjoyment and play in soccer and sports but we're and we hope that you don't have to break an arm. I'm kind of globalizing this response. Yeah. But if something does happen, then you know, we're going to be here to support you and we're going to get through it as a family. It's how I would respond.

Scott Benner 9:43
It's 99%. The same vibe is what do I What happens if my blood sugar gets zero? What happens is we're gonna try really hard for that not to happen if it tries to happen. We're gonna do our best to fix it with everything we know. And here are some of the things we know.

Erika Forsyth, MFT, LMFT 9:57
And yeah, I think it's you know, this the children They're asking questions because they're scared. And I think as parents, we want to reinforce that, you know, that things do happen. We can't protect them from everything. But if something does bad happen, or something that we're not planning for that we are going to do our best to support you as our child to get through it, and we're gonna get through it together.

Scott Benner 10:20
Okay, ready? Yes. Eight years old. When will my pancreas work again?

Erika Forsyth, MFT, LMFT 10:26
Ah. Yes, I often still ask that question.

Scott Benner 10:33
Still wondering that myself? What is happening? Oh, I apologize. Hold on one second.

Erika Forsyth, MFT, LMFT 10:38
Yes, yeah.

Scott Benner 10:44
Hey, it's a little early for the ad. But it's a natural break in the conversation, and then everything will just flow after this. So I'm putting it here. I'm here to tell you about trial net trial. That, of course, is a type one diabetes risk screening organization that offers that screening to you at no cost. This is for people who are relatives of someone with type one who's eligible, you qualify for free risk screening, if you are between the ages of two and a half, and 45. And have a parent, brother, sister or child with type one diabetes, you also qualify if you're between the ages of two and a half and 20. If you have an aunt, uncle, cousin, grandparent, niece, nephew, half brother, half sister, who has type one. last way you can qualify. If you have tested positive for auto antibodies, outside of trial net, like through another service. Don't forget this is free to you. All you have to do to sign up is go to trial net.org forward slash juicebox. answer a few quick questions to see if you're eligible. And then you join 1000s of type one families who are on the pathway to prevention. Here's how you get screened with an in home test kit with a lab test kit, where by going to a trial that location, alright, so you can either do it at home, they'll send it to you, you do it with a finger stick, and you send it back with FedEx, like they come to your house just pick it up. Or you go to a lab like quest where LabCorp where they'll do the blood stuff in the sending. Last way, you can ask if there's a trial net location near you, where you would go to get the blood draw done, then your results right this is what you want to know about. Your results will be received in four to six weeks. If your results show that you are in the early stages of type one. Trial net we'll schedule a follow up visit to see if you are eligible for prevention study. Here's a couple of reasons why you may want to know if you have the auto antibodies. Type one family members are at a 15 times greater risk to develop T one D than the general population. Type one screening will detect if you are in the early stages of type one. And if you are identified as at risk trial net is here to help you. They have prevention trials. If your screening results show that you are in the early stages of type one, you may be eligible to join a prevention study testing ways to slow or stop the disease progression. They also offer ongoing monitoring by top type one researchers in the world. And if you do develop type one being monitored in a clinical research study like trial net decreases your chances of DKA from 30% down to three. And you know what else? It helps the greater good a future without type one diabetes starts with you. Research can advance with participants. Research can only advance with participants. The more participants who are involved in clinical research, the faster we'll find answers, so you're in a unique position to identify treatments that will slow or stop type one from happening. In the last 20 years trial net has been the leading network and type one diabetes prevention research. In addition to being able to accurately predict who is going to develop type one trial, it has now found a way to delay it by leading it to plus a mob prevention trial to please the mob is the first drug to delay type one for a meeting of two years. This is an incredible advancement that gets us one step closer to our ultimate goal. Trial net.org forward slash juicebox when they ask how you heard about them, tell them to Juicebox Podcast, but you have to complete the process for it to account for me. So don't just order the kid at home and sit on it. You have to do the work and send it in

Okay, so I'll start over again because we got interrupted I apologize. A young child when will my pancreas work again?

Erika Forsyth, MFT, LMFT 14:51
Yes, so that is a tough one. I think it is. You know when I was diagnosed there was still a lot have tacos, let's Brina work, we're fighting for a cure, we're walking for a cure. And I think those are all lovely things, I think it's also really helpful to not plant those seeds of not necessarily false hope. But I think you want to be realistic. And so what I was what I was told, and when I talked to, you know, younger children in my office about, you know, was Will this ever will ever get over this? Will I ever get better? I'm just, you know, in terms of like, the sick narrative, right? And I think to do you have to be honest, reticulating, eight, you know, I think the child can, can understand that, you know, the pinkness might not work will probably probably not work the way it used to. Without help. Now, I think there, obviously, there's a lot of hope for the future about all the various ways that maybe they transplant aside, I don't think that's like a really realistic thing to go into with children. That has a, you know, enough complications of its own, but I would, I would say, you know, I don't want it probably won't work the way it used to. And we have all these other ways to to help it to help your body function, even though it's not going to work the way it used to. But I think in that allowing space for all of the other emotions of you know, that tease the child's trying to find some hope in the diagnosis. Like, what are things ever going to change? And so allowing space for the anger and the sadness around? It's a loss? I know, we've talked a lot about that already. But I think allowing for instead of quickly going to well, but it's going to be okay, because we have our pomp or CGM are we have, you know, there are all these other cool possibilities out there that might happen in the future.

Scott Benner 16:55
Let them write, let them have their feelings experienced their complete feelings about it. Yeah, I listen, the way I talk about out loud is I hope for a cure, and I live like there isn't going to be one. Yes, yeah, I've

Erika Forsyth, MFT, LMFT 17:06
heard you say I like that. Yeah,

Scott Benner 17:07
I just think that that's, that just seems reasonable to me. I also, you know, to get a little more thoughtful about it, we haven't exactly cured a whole bunch of things in the course of human history. So, you know, there's a lot of things that need to be cured is, and I think it and I not just think, but I've seen the idea of there's going to be a cure stop people from taking good care of themselves in the moment thinking, Oh, this won't matter, because in a few years, this won't exist anyway. Mm hmm. And use that as a crutch to not take care of themselves, which.

Erika Forsyth, MFT, LMFT 17:47
Yes, yes, absolutely. No, I love that phrase of Yeah, I mean, I think it's okay to hope. But to be realistic with that hope. Yeah. And live like there isn't going to be one.

Scott Benner 17:58
Okay. Oh, here's one. That's a specific question. But I am going to make it a little more generic. This person just says, Does this mean I can't live in my car now and says that their child had an ambition before they were diagnosed, to live in a car and travel around. But I think what they're asking is, are my dreams not possible now?

Erika Forsyth, MFT, LMFT 18:16
Wow. Wow. Right. Yeah. Can I I was hoping to do whatever it is. And now with this diagnosis is that impossible.

Scott Benner 18:30
You know, the people usually use use the Hey, used to be Oh, you can do everything except be in the military or flight airplane, like a like a passenger. Like it used to be like that thing, of course, until you meet a kid that wants to be an airline pilot. And it's not as comforting. But that idea of like, you can do anything except for these two odd things over here, which you don't want to do anyway. Don't worry about it until we want to be in the military or something like that. So. So what is the real question? The real question is, AI? Are my dreams, not possible? And I would think if you're young enough, the answer might be, I might say, Look, I know right? Now you want to do this thing, but you might learn or grow or think of something different, and you'll be able to do that fine. And if you can't do this thing, I bet you we could find a way for you to do it. Because I don't imagine much you can't do with diabetes, honestly.

Erika Forsyth, MFT, LMFT 19:22
Right. Yeah. And I know you think you can be in law enforcement with it.

Scott Benner 19:28
I've interviewed a police officer. Yeah,

Erika Forsyth, MFT, LMFT 19:30
that's what I thought. That's what I thought. Okay. So yeah, in terms of traveling around in a car, or living in a van or traveling around, you know, the US or wherever, I think that's definitely doable. I would probably want to make sure there was a a CGM or something of that nature just for safety. But it feels like I think upon diagnosis, it feels like there's a loss of freedom. And so So whether it's this particular child or any other children, you feel like oh, no, are all my other all my other dreams or all the other things that I feel like I can do freely? Or without planning? Is that is that going to be taken away from me whether it's a certain job or a certain activity or birthday party, you know, all of those things? And it is it is a mental shift. So I would say, you know, yes, I think most dreams most jobs, you know, having children, which I was told would might not happen, you know, 35 years ago that we are we are evolving within obviously, our diabetes treatment, man and management, and that most things are possible. Yeah, it just takes planning. I mean, that's really it just takes more planning.

Scott Benner 20:48
Yeah. And if you are in one of the things that's blocked, like military, like, there's a question here from somebody that says that their father was a Submariner, and that the kid wanted to do that, and they can't do that now. And so, but I do think that's a valuable, like, you know, I mean, honestly, look, there's a lot of nine year olds that think they want to be something that don't want to be at when they're 18. That's right. So maybe just like, it's maybe you you go hopeful, we'll we can take care of it. And then maybe privately, you hope it, you know, they changed their mind, or you can actually figure out a way to get to it. I'll tell you. That's an overwhelming question here. Here's another overwhelming question in here, some version of why me? Uh huh. Uh huh. So, yes, know what to say about that.

Erika Forsyth, MFT, LMFT 21:32
And I, I remember, I think every child for the most part goes through this stage. And even as the parent is, the caregiver might explore that in their own processing. I remember even reading a book. And I think it was right after I was diagnosed, called Why me about a child who was diagnosed, it was a fictional book. And I think, if we were to zoom out, most kids with any kind of sudden change or diagnosis of you know, that shifts their their lifestyle is going to go through that. And I think, you know, we, I spend a lot of time with my children clients processing this, and there's really, you can't rush it. I think it even will come and go throughout maybe your lifetime. Even if you come to a place of acceptance, some, some children are incredible, and say, Well, this is just going to be my thing. And I'm going to make it work. And they can get there very quickly. Some, some children really struggled with the anger, because it's, it's hard. It's hard as a child, you know, to manage this, and even as a grown adult. And so I think, like any kind of grief process, you might come to a place of acceptance, but it it's okay for it to come back. And there isn't we can't we can't answer that question. Right. We can't say, Well, this was, you know, this was your plan for your life. I think that we that's the hard part, right when our children ask us questions that we really can't have clear answers for. And we can say we, you know, we don't know, but we know it feels, I imagine it feels this, this and this, and let's continue to talk about how it feels.

Scott Benner 23:29
Yeah, yesterday, I was with Arden while she was getting her senior portraits taken by a photographer. And some point, she moved a certain way. And the woman was like, is that in a pod? And Arden goes, Yeah, right. And the lady goes, Oh, my daughter's best friend has diabetes, and she wears an omni pod. And you know, I mean, like, it's no great thing. We were only like one town away from where we live. Like, it's not like I was in Massachusetts, and I grew up in New Jersey, and the woman said the kid's name. And I said, Oh my gosh, I put that kid's first insulin pump on her. Oh my gosh, she goes what so the kids like five, six years younger than my daughter, but had played softball, actually, they listened to this. So this is where they're going to hear this. And I remember them just being if I remember, like, apprehensive about putting on an insulin pump the first time and I was just coming to my house and I'll I'll do it for you. And all these years later, there we were with a woman taking my daughter's picture. And she's like, Oh, my daughter's friends with that girl. So the woman knew about all this and it started a small conversation. And I don't remember the exact question she asked him, but it was about like, is this you know, like, how is it living with diabetes kind of thing? And Arden's because she just says, I'm good with it. It's fine. And she really meant it. She meant and I did think in that moment, I wonder if it'll always be that way or she'll wake up one day when she's 36 and just be like, Oh my god, I still have diabetes. This just still happening. Hmm. But I appreciate your answer. So, okay, you're gonna keep going. We are going to be crying by the time this is over. Just see oh, my gosh. Well, we already covered when will I go? When will it go away? So it's not fair. Why me? How long can I go without insulin? That one is I think right along it's I think that falls right into the what happens if m zero like right figure, it's the same kind of scenario like it's a real health issue it could end with it could end poorly with, you know, decay or death. Right? The answer has to be, you need insulin all the time, you need Basal insulin, and you need to Bolus for your meals. I think it just has to be like, like very cut and dry when you talk about stuff like that.

Erika Forsyth, MFT, LMFT 25:44
Yeah, and I think I might be reading in too much to the question, but also kind of like, am I gonna have a break from this? Is there ever going to be a period of time where I can just not take my injections or have my pump on my body? And I think that's the that's the child trying to process like, Is this ever going to end? Yeah. Yeah.

Scott Benner 26:05
Well, here's the next here's three questions later. If I don't do insulin, will I die? Mm hmm. And I don't know. Like, again, down to age again. Right,

Erika Forsyth, MFT, LMFT 26:15
right. Yeah. How did you know how old that child is? Okay, well, I guess it probably doesn't necessarily matter. I could probably answer this, depending on the age bracket is kids

Scott Benner 26:28
younger, because they had three questions I love. Here we go. The kids said, If I don't do insulin, will I die? Then she said I love my diabetes today, but I didn't love it yesterday. When will my diabetes go away? When I was in your tummy? Mommy, did I have diabetes, too? Oh, so. So she's little.

Erika Forsyth, MFT, LMFT 26:47
Yes. She's She's processing what does this mean? And like, also, because you know, a younger child has a hard time but time

Scott Benner 26:57
Tommy thing got me. God damn it. Yeah, yeah. Go ahead.

Erika Forsyth, MFT, LMFT 27:02
Yes, I think processing like the timing of you younger children don't know that yesterday, today, tomorrow, you know, in two hours in two weeks, right? So they're trying to understand the permanency and that's a really hard concept. And like, was I always this way, did they always have it? Ah, it's it is painful. And I think for you, the younger children, I would stay you know, day to day. Not? I would maybe because I don't think they really understand like, well, this, you're going to have this forever. Just say, Well, today, we're gonna we're gonna do our best today and then we're gonna go to bed and then tomorrow, we're gonna do our best again. I think the was does she start off with if I don't have insulin? Will I die? First one? Yeah. Yeah, I would say for the younger children. I would. I don't think you need to go to the death. Like, I think we say well, if you don't have insulin, you I would start in the affirmative. Like you need insulin to feel good. And excuse me and to, to live the life that you want to live and play and have, you know, go to school and have playdates and play on sports or dance. And so you need insulin every day to do all those things.

Scott Benner 28:22
Is reframing important than because, yes, they're asking the questions sort of in a defeatist way. You need to like flip it around and reframe it so that it's not, so that you hear if I don't do insulin, why die? You don't even address that. You say, Oh, no, let me let me explain to you right now you need insulin to feel good. Insulin keeps you healthy. You know, so you, you accentuate the positives. And don't don't skirt the question, but don't lean into the sadness of it.

Erika Forsyth, MFT, LMFT 28:52
Well, or the. I mean, obviously, we all know that that's the reality, right? If we don't type ones don't have insulin, they will die over. You know, I don't know what the actual length of time is. I usually generically say a week to people to try and like when I'm explaining what my type one is to other people.

Scott Benner 29:12
You're like, if I eat this cookie right now, I'll be dead in seven days.

Erika Forsyth, MFT, LMFT 29:18
Oh, my gosh. Yeah. Those questions like, can you eat that? Yeah. So I think for the Yeah, for younger children, I would say probably up to like the eight to 10. I mean, I think as younger children, even the 567 year olds, they will understand death acts outside of their own body, right. They in terms of pets, dying, grandparents dying. I think relating it to their own concept that they will they might ask those questions even when they are exposed to death. Will I die someday? And I think you can say, Well, we, you could also globalize and say we know what we're all gonna die someday. Depending on how your child is, in our experience around death, if there's no experience around death, I would keep it in the affirmative of saying, we need insulin to keep you alive. Or to keep you healthy. We need insulin to keep you happy, and doing things you want to do. I would say later, eight to 10, you could have more kind of realistic conversations around, you do need it to keep you alive.

Scott Benner 30:30
I listen, I go back all the time to a story that a woman told on here once very quickly, her child with diabetes was younger with eating, they had an older child that didn't have type one, the mom had to leave the house. And the kid, the older kid was put in charge of making sure that the child ate because they had already given them insulin. Mom leaves the kid doesn't want to eat her food, his or her food, excuse me. And then the older kid in a desperate attempt to get them to eat says, you know, if you don't eat that you're going to die. And no one had ever said that to the kid before. Hmm. So the child was just wrecked when the mom got home, like sitting on the floor crying, because no one had ever told them that diabetes could kill them. Yes. So that's how you don't want to find out is my point.

Erika Forsyth, MFT, LMFT 31:15
No, that Yeah. Yeah, I think you would you want to have the these types of conversations with your child. So that yeah, they aren't shocked?

Scott Benner 31:26
Yeah, you're gonna have to take some responsibility to really feel your kid out and make sure you're having these conversations at the right times. Like nobody can tell you what the right exact age is to do something like this. Alright, yeah,

Erika Forsyth, MFT, LMFT 31:37
it really depends on your family. The way you talk about things your family's life experience, exposure to death. And your personal, your, your comfort level, I think you need to be I think it as a caregiver, it might be hard to come to terms with that concept, right? That your child might die if you don't, your child could die if you don't do all the things. But I think I think going back to like the stats, I really I don't know, maybe you just got but like how often people die from a low blood sugar. I mean, obviously there's chronic, if you're not in good in you know, and you're not in your in your managing well. Yes, yeah,

Scott Benner 32:21
I don't know the numbers. But I have to tell you that it's an idea that I lean on pretty heavily for my own daughter, right, which is that a lot of people have diabetes, I don't wake up every day to the news that 20,000 More people have died from local, overnight, we have the best gear we can have. It benefits her health to do things the way we're doing. And I really hate to say this, but if that's how she goes out trying to live well. There are worse ways to die. And so I just think that, um, I think that the answer is we're going to do the best thing for you. We can yes, there's risks and everything. There's risks in this too. Yes, yes. All right. So Erica, the next two questions are both equally horrible in different ways. So here's one for you that asked a lot. And I genuinely don't know how to answer this one. Because I don't have a lot of experience in this space. But why did God give me diabetes? Mm hmm. So if you're a very religious family, you may be living your whole life on the bend of like, hey, what we have that's good in the world comes from Jesus, but we have it's bad in the world comes from Jesus, then all of a sudden, this happens. And you know, Jesus loves me, why am I why I've diabetes?

Erika Forsyth, MFT, LMFT 33:30
Mm hmm. Yeah, that's, I hear that question as well. And I think it comes down to yes, your relationship with God. And if you are, if you have a faith and you believe in God, it's it's very natural for a child to then say, Well, if God is in control of everything, why did he let this happen? To me? That's kind of the question I hear, why didn't he protect me from this? And I would explore with the child, you know, what, what is their understanding of how things work in the world. Like, God doesn't plan for people to have car accidents, like bad things happen, that are out of our control. But it doesn't mean that God is not with you, or that God doesn't care or that God doesn't love you. And ultimately, where children will, will land as well. You know, God didn't necessarily give this to me, but he can help me get through this. In terms of if they have a faith or trust in him. Yeah,

Scott Benner 34:43
right. If you have a religiously faith based life, you don't want to destroy it in one fell swoop by saying, I don't know. I guess he sucks. You're like, right, yeah. You just gotta like you that alright, that makes sense. But

Erika Forsyth, MFT, LMFT 34:54
I think I think that that is also you're wrestling with and trying to find a reason and why you were diagnosed, and you're going to be angry at anything and everything initially, right? And so you're there trying to find like, Well, God, I'm angry at God, I'm angry at mom and dad, I'm angry at whatever it is we're trying to place. Find a reason or place blame when some when things just happen that are out of our control,

Scott Benner 35:19
I find that randomness like comforting like that something bad happened, and it's not for like it just happened, like some people's genes just kept, you know, people like the way I think of it. My daughter has diabetes, because a really long time ago, two people met each other had babies, and along the course of that happening over and over again, lead to this auto immune issue. And that's why she has it, it almost feels like it's nobody's fault. And right. Yeah, and that's, like comforting to me. I guess my brain just works backwards.

Erika Forsyth, MFT, LMFT 35:48
No, I think that's helpful rationale as well, you know, that? I mean, it obviously isn't anybody's fault. It's our how our genes have, as you said, mutated, right?

Scott Benner 35:59
It's horrible. To look at your wife and think, had I just picked the other girl This might not, you know, you know, or she would have just said no to me, then, you know, this wouldn't happen, but then the kids wouldn't exist. And I'm not willing to give them up for that. So right. You have to be okay with this. Right? You know,

Erika Forsyth, MFT, LMFT 36:17
yes. All right.

Scott Benner 36:18
Here's a little twist. I'm going to tell you what the kids said. But then I'm going to ask you a question for parents. Okay. Three years old, had had diabetes for about a half a year falling asleep on night says, Mom, can you take my diabetes away? Because I don't want it anymore? Can you take it away? In the morning, and he wanted to wake up and not be diabetic? She said, oddly enough, at the time, they didn't talk about this stuff, because they thought the kid didn't have the capacity to even talk through it. But obviously was having these thoughts. So my question around this one is, what should she feel after that happens? Like, like, and I'm going to just give you another one. Like I was putting art into bed one night, a long time ago. And we were just testing her blood sugar before she went to bed. And she just very, like matter of factly says, Hey, what, how am I going to do this when I'm in college? And she was like, I don't know, seven or eight. And I said to her? Well, I'm figuring things out right now so that I can teach them to you, and then you're gonna know what to do. And you'll just be able to do them. And I said, and if you have trouble, you could call me. And I could help you because I really understand it. And I'm sure you'll make friends who will help you. And I did all that. But that's not even the story. The story is that I barely got out of a room and closed the door before I cried a lot very early. So what do we do for the people who are being asked these questions?

Erika Forsyth, MFT, LMFT 37:46
Oh, well, I know. Yes. My heart goes out to parents who are I mean, it's it is incredible that the child asked this, I know, many caregivers have shared this, you know, wish to me. I know my parents shared this to me, like, oh, we would do anything to take it to height have this instead of you. Yeah. And you know, as parents, you know, you want to protect your children as much as you can. And the fact that this three year old is verbalizing, like when I will just go away, can you take this away? That's really, really painful. I think. So as you asked, How should she feel in the morning, meaning the child or

Scott Benner 38:30
the parents? I mean, the parent, like, what would it mean, you can say whatever you're gonna say, that's gonna be valuable for the kid and their progress. But when you get out of the room, you realize I can't take this away. That's all this kid wants. And now I'm a failure. Yeah, no,

Erika Forsyth, MFT, LMFT 38:44
I think you go, you go out and have a good cry. And you because I think you're there's a good there's probably that's going to trigger some grief around the permanency and around hearing actually, that your child doesn't want this, right. Doesn't want to live with this. And I think so understanding that's going to obviously, it's causing grief, it's causing sadness, and that we are you are out of control. We can't take it away from your child. And so the next morning, I would if, I mean, it depends on how the child would wake up, but I would have a conversation with my three year old and just thanking thanking them for sharing that and saying any, you know, encouraging that those continued conversations around, you know, wishing it were gone, knowing that we can't take it away, but I think affirming her ability to express that is where I would lean into as a parent. And I think it's okay to be sad, sad with your child.

Scott Benner 39:55
Well, my take away from what you just said is that it's going to take a long time for this to be okay. and that it's a continuing conversation, you don't want to just shut it down or think you're going to fix it with one statement today. And I think that's hard for people to hear. But if you have diabetes in your life, it could take years and decades for this all to, to flatten out and feel like it's normal. And it doesn't mean that it's not worth doing. I just think it's a very long process like life, it's a very long, you know, when they be people say, like, Oh, you're married, like, if you got to work at it every day. You don't work at it every day with the idea of like, well, once we've done it for 20 years, we won't have to work out. It doesn't go that way. So this is part of your life now. And, and having conversations about it, and these conversations are going to morph, they're going to change, the questions are going to change, and you have to keep having the conversations where it'll get bottled up somewhere and cause a problem. So

Erika Forsyth, MFT, LMFT 40:49
yes, yeah, I think just Yeah, accept accepting the fact that once your child or you as a caregiver has accepted, it doesn't mean that it's all going to be you know, rainbows and flowers for the rest of your life. Like it's okay to go back to the frustration and sadness.

Scott Benner 41:12
So here's the thing that parents do a lot that I think they think is kind and it might be and I just want to understand, but it comes up a lot in this thread. Because then their children ask why they say it when parents say, I wish this was me and not you. Mm hmm. Is that something you want to put on a kid? Like, is that kind or is it scary?

Erika Forsyth, MFT, LMFT 41:34
Yeah, I think those are the parents thing. I wish this was me and not you. I wish I could take this away from you. I wish I had it. And as I yeah, I remember distinctly my father saying that multiple times when I was newly diagnosed. And I think that's their, their, their processing their grief, and sadness, and not being able to control you know, a protect, quote, unquote, protect their child from hard things. I also feel like, is that a second? Is that a hard thing for a child to hear? Is it scary?

Scott Benner 42:10
Yeah. Should you keep that to yourself first, does it help them to hear it because at a certain age, I've I've said to Arden, not that but I've said something to her about? Like, I know, this is hard, and she'll be like, No, you don't? And I'm like, Oh, she's right. I don't really know. So you know, like, Is that the same kind of vibe? Like, I wish I could take it away? But that's nice, but you can't so why are you saying it to me? Like I don't know if that as you get older if that can be a concern?

Erika Forsyth, MFT, LMFT 42:34
Right, I think, sorry. I don't know. But this making that noise. Sorry. Turn that off. Yeah, I think what the Oh, my goodness, what is that? I don't know.

Scott Benner 42:47
Hilarious. You're like, don't worry. I've got this. I'll shut it right.

Erika Forsyth, MFT, LMFT 42:54
Let me see. It might be okay. All right. Well, hopefully it doesn't happen again. Apologies. Okay. So I would say. So the parent, what the parent is trying to express is there is their sense of loss, right in their sadness. So is it helpful? I don't know. I mean, I don't remember feeling. Just personally, I don't remember feeling angry when he would say that. I think now, if you're to kind of pull out and zoom out a little bit more again, to in general, is that helpful? That yeah, the parent can't take it away. But what they're really trying to say as I'm so sorry that this is happening to

Scott Benner 43:40
you. I would do anything for you. If I could. Yes. Yeah. I know. I know. Listen, I don't think I'm not making a judgement about it. I don't have a feeling about it one way or the other. I'm just it makes me wonder. Because a lot of people say it. Do. Yeah. So I think

Erika Forsyth, MFT, LMFT 43:55
I know this is hard. I think you're trying that, you know, you're trying to validate and empathize with your child. I think maybe it could be reframed to. I I don't know how hard this is because I don't have it. I'm not I'm not the person living with it. Yeah, but I can imagine it's really hard.

Scott Benner 44:17
I'll tell you this. I stopped in under, I stopped wondering if I could put myself in my daughter's shoes. When she said to me one day she referring to a severely autistic kid that she know who had a lot of deficits and whose life wasn't easy. She said that she'd rather be him and not her because at least he can't die from his thing. Mm hmm. This kid is feeling life on a level that I did not understand. And I am not going to try to put myself in her shoes again in front of her. Because I mean, she was not very old when she said that.

Erika Forsyth, MFT, LMFT 44:57
Wow, that is profound. And I'm sure with really hard to hear? Yeah, yeah,

Scott Benner 45:01
I'll tell you one of the things I'm great at because of diabetes is staring into the eyes of a person I love without crying when all I want to do is cry. So yeah, yeah, super good.

Erika Forsyth, MFT, LMFT 45:11
Yes. And I think kind of, you know, that's a really normal process, though, of comparison of like, illness comparison. And gosh, I feel like this would be easier. And that's all you're all. That's all just kind of trying to gamble make sense of it? Like, I wish, it feels like it would be easier with this illness and with the other one. But we know that all of it is hard to do, like you're trying to make sense of it.

Scott Benner 45:39
Right? Well, there's a lot of sentiment in here about bravery too. And I, I fall very weird on this idea, because I understand the sentiment of my kids are so brave, for the bravest person I know is blah, blah, blah. But I also don't think that I don't think people deal with medical stuff out of bravery, I think they deal with medical stuff out of necessity. You know, like, I mean, I would be happy for you not to think of me as brave if I didn't have to get injections, or you know, or, or have a pump put on me or whatever, you know, excuse me stuff that I don't want or that might hurt for a little while or be I don't know that that's bravery. It's just, it's um, I mean, that's the will the live really is what it is.

Erika Forsyth, MFT, LMFT 46:29
Right? Yeah. And I hear this concept a lot. Or, you know, in parents or think or they're trying to affirm their child in taking steps to keep themselves alive. And I think bravery in the concept of living with a with type one could be instances where maybe the child has finally felt comfortable sharing with their peers. And they maybe have been hiding it for months or years. Or maybe bravery is standing up and teaching your class about it. You're, you know, a general information. I don't know, just kind of smaller steps within living with it. I think, yes, I guess you are being brave by choosing to do the things to keep yourself alive. I think I've learned Yes, it's out of necessity to know,

Scott Benner 47:25
I mean, and I'm not trying to denigrate it, but like, I've heard interviews with people who are like been in natural disasters and like, This guy's a hero, and the guy's like, listen, I was just trying to get out of the building, those people were in front of me, it wasn't happening. So I coordinated and got the hell out of there and got everybody else out to like, I was just trying to stay alive, you know, and it benefited other people. And so I mean, I'm not a hero, like, Do you know what I mean? And I don't know if there's any. Also, is there any psychological reasons why you wouldn't want to set up a seven year old to think that they're, you know, the end all and be all like, I don't know, like, it's just a weird, it's a weird spot to be in because of diabetes? I think, a lot of questions, and I don't know all the answers to them.

Erika Forsyth, MFT, LMFT 48:06
Yes, I think there can be brave choices, while living with type one, and brave decisions or brave actions, while doing all the things that you have to do to keep yourself alive, if that makes sense. Yeah, and I think those are fine to affirm. Like, maybe it's the child was scared to go back to dance class, because they didn't want their they didn't want their friends to see their their pump, or their CGM. Or maybe they were afraid to go back to play sports because they didn't want to go low. And I think affirming those decisions, that I think that that is being brave, of doing something that they're scared they were scared to do or fearful or intense and anxiety around because of the type one and they chose to do that. I think it's I would affirm that as being brave to do those things that they were scared I

Scott Benner 48:57
yeah, I definitely agree. I didn't like I said, I don't want to come off. Like I think that living with diabetes isn't brave. But here's the here's a nice one. It starts off terrible, but then it ends nice and and you don't have to answer it. So take a break, breathe for a second. Okay. When her daughter was first diagnosed at six, she would always ask how long will I have diabetes and when will it go away? But then at nine years old told her mother that it doesn't matter anymore because she still has friends. And I think that maybe is an insight into how kids minds aren't as you know, sometimes they're not as they're not looking for the same things that you're looking for as a resolution maybe? I don't know, I just thought that was very sweet. Like it's

Erika Forsyth, MFT, LMFT 49:41
that is you know, and I think yeah, I think it also is very appropriate age appropriate, right? Because it's six they're not understanding the permanency and then at age nine, because and not understanding is this going to take away My friends, it's just going to change my life. And then at nine, they're saying, Oh, well, actually, I can still, I still have friends, I can still go to school, I can still hopefully do the things I want to do after school. And I still have to, I sought to manage, but I still can do the things I want. And I have joy. It's really

Scott Benner 50:17
Yeah, I didn't see a degradation of the things that they were hoping to have. Now. I mean, there's another kid that said, you know, why does diabetes ruin everything? But I, that also could be? I mean, listen, a big part of why this podcast exists is because I believe that a lot of the psychological, like, lightness that can come is after you really understand how to use the insulin so that you're not constantly chasing things around, and you don't know why things are happening. So maybe that kids stuff is being ruined. Because, you know, they're constantly chasing blood sugars, and they're high and they're low, and they're stopping from doing things. But that's why I think that it's important to understand how to better manage, so you can lessen those moments.

Erika Forsyth, MFT, LMFT 51:00
Yes, yes. And yeah, we don't know maybe that. What's what's going around with surrounding with that statement? Is he not feeling good? A lot of the time?

Scott Benner 51:10
Well, yeah, there's a ton of questions in here about why do I feel angry when I'm higher? Why do I feel anxious when I'm lower? You know, all that stuff? And I mean, listen, we've answered those questions in the podcast a million times, you know, your blood sugar fluctuations. impact your impact your brain. Yeah, absolutely. Everything else. To me, the answer to that question is, I don't know. But I'm gonna go back to Episode 210 of the podcast, listen to the protests and try to figure it out. Like, I mean, honestly, that that's a good answer. Okay, here's one. That's hilarious. Why does the insurance company take like two or three months to get me a pump? Why can't they have more than one person working on the paperwork?

Erika Forsyth, MFT, LMFT 51:48
Good question. Yeah.

Scott Benner 51:50
That we all say yeah.

Erika Forsyth, MFT, LMFT 51:55
Oh, my gosh, yes. I don't know. That's, that is sad, though. Is it still does it take that long? I don't, I can't. I don't know. What

Scott Benner 52:02
this kid doesn't know is that one day, they're gonna have the pure joy of getting on the phone with the faceless person in an insurance company and cursing at them. It is so cathartic, you're gonna love.

Erika Forsyth, MFT, LMFT 52:14
Yes, and yeah, we just, they're, they're excited. And they want it. I get it. Yeah, no,

Scott Benner 52:19
but I just love it. Trust me. You don't know how great it feels to yell at somebody on the phone? Who you don't know and have no relationship to wait till you have. It's a lovely moment. Oh, my God. Have you never said the F word to an insurance company? Erica?

Erika Forsyth, MFT, LMFT 52:31
No, I have not actually I find it the quickest way to

Scott Benner 52:34
get resolution.

Erika Forsyth, MFT, LMFT 52:38
Oh my gosh, society's

Scott Benner 52:39
different. Now people don't accept things as well. But I love cursing at people on the phone. I think it makes things actually, you know, I try very hard not to be in at all confrontational. Like I like things to go smoothly. But when it gets down to it, I think a well placed F bomb gets you somewhere sometimes.

Erika Forsyth, MFT, LMFT 52:58
I'm glad that that has worked for you.

Scott Benner 53:01
Feel better? For a couple? Yeah. All right. Let's finish on a. They're all low notes. So let's just finish off our note. Will someone want to marry me? And can I have a baby?

Erika Forsyth, MFT, LMFT 53:15
Oh, oh, I resonate with that one. As a little girl. I definitely asked that. How I'm curious how old is this child? Oh, if you if it's clear or

Scott Benner 53:31
written, it is not clear. Okay. I can tell you one thing. I've interviewed people, women, specifically, a lot of different age groups that I think wonder this? Yeah. You know, like, is somebody gonna want to take me on as a burden, I think is how it feels. And yes, terrible.

Erika Forsyth, MFT, LMFT 53:49
Yes, no, it's a really normal, the both of those are normal questions to have. And as we know, back in the day, I don't know how many years ago but probably even 4050 years it it was very scary to have children with type one. And we know we know now obviously that that you can and it takes work. The but the relationship piece, I think what the child is kind of revealing by that question is do I am i Is there something wrong with me? Is this yeah, as you said it is am I going to be a burden? And I've had children ask this as well. And we talked about you know that there's no no one is perfect going into a relationship or marriage and that when you find the the best fit for you that they will everyone will figure it out together, you know, and we'll work together.

Scott Benner 54:56
I tell people and I'll tell you I tell my daughter the same thing. Anybody Buddy, who doesn't want to be with you because of diabetes? You don't want to be with first? Yeah, I listen if, Eric if they don't want to, if they don't want to marry you, because you got a ton of college loans that I understand, okay, but but but if if somebody, if it's who it's not, it's not who you are maybe per se but it is something that you that you live with. And so if they're not up for that they're not up for you. And yeah, and I don't think you want to spend a lot of time trying to talk somebody into it to be perfectly honest with you move on. And it's one of the reasons why. Like, I think every question that we've asked here today, I've answered already throughout the podcast, and but I know people can't listen to everything. So I try to have people on all the time who are in great relationships with other people who are supportive of their diabetes. And I do that partially so that you'll get like, wow, he found a woman that loves him, she found a guy like cetera, that these two girls got together, whatever it ends up being, people found each other, and the diabetes wasn't an issue. And and I do think that's the answer to that question. The right person won't care.

Erika Forsyth, MFT, LMFT 56:09
Right? Because ultimately, that reveals more about them, then, you know, if if they are, if that if it's too scary, or too much, yeah.

Scott Benner 56:19
And also, maybe it's not even a judgement of them. It's just something they can't deal with. Or maybe they didn't. I mean, it's hard to know in the moment when you're dating, but there are people you feel like you're in love with who you know, 20 years later, you realize, like, I did really love that person back then. But I couldn't have been married to them for 30 years. Like there's something special about my wife and my relationship. Because I don't know how aware everyone is but like, you're really hard to be in another with another person for this long. It doesn't. Yeah, if a lot of things that you can't even imagine when you're young, if they don't mesh well. It's just it's very difficult. And it's too easy to get out of a marriage. So people will will bail before they even try sometimes. But that's not my point. My point is, seriously, the right person won't care. That's right. That's what I think. So and you'll probably still end up divorcing them for different reasons. So don't even worry about stopping people to talk to her divorced. It's like wanting to isn't it?

Unknown Speaker 57:18
Oh, I don't know. Yeah.

Scott Benner 57:21
Always wanting to be upbeat. I had someone on here recently. I know you have to go by. So I'll end by telling you I just interviewed somebody a couple of weeks ago, who at the end of the interview told me that their family saw you and it was a huge help. Oh, that's wonderful. So I won't share anybody's personal details, because I think that's wrong. But they were very, very complimentary about the time they spent with you. Oh, thank you. Thank you very much. Still big patients in California.

Erika Forsyth, MFT, LMFT 57:50
Yes, that is still the rule. Yes. But yeah, anywhere in California, because we now have the telehealth comfort. So that's a great option. Oh, cool.

Scott Benner 58:00
Well, I will definitely put in your URL here. I want you to know that as I just kind of like highlight something here, we got through what I would consider to be a very small fraction of this thread, which I have been scrolling through the entire time I was talking just now. Okay, and so I just wow, I just got to the end. Now a lot of them might end up being worded differently, but being duplicates of each other. But I really appreciate you spending the time going through this with me because I felt a real responsibility to this thread after I posted it and I did not know what to do. Like I got I really like I there was a moment when I was like, Oh, I messed up. I shouldn't have done this. Like, like I'm not qualified I in my mind. This was gonna be like Jenny and I doing like short episodes about questions. Right. Just did not go that way.

Erika Forsyth, MFT, LMFT 58:53
Well, I'm glad we were able to get through a portion.

Scott Benner 58:55
Yeah, me too. Oh, so listen, at the end. Let's share this with everybody. My favorite place to cry is in the shower. Where's yours?

Erika Forsyth, MFT, LMFT 59:02
Oh, you know, I'm I'm a good car crier. But also the shower. Yeah.

Scott Benner 59:06
I actually think that's good for people to know that. I think that at some point, all this is overwhelming. And you have to just let go of it. Because if you hold on to it, it's just it's, it's debilitating. And it'll it'll impact you in ways you'll never see. So I like getting in the shower and crying. You can do it.

Erika Forsyth, MFT, LMFT 59:24
Yes. Yes, I affirm and support that 100%

Scott Benner 59:30
Okay, thank you very much.

Well, first, I want to thank everyone who sent in all those questions. There are actually more. I'll probably go back and do the rest with Erica at some point. And speaking of Erica, thank you so much for being a great voice on the Juicebox Podcast. Check her out. If you're in California at Erica horsethief.com I'd also like to thank trial net for being a sponsor of the Juicebox Podcast. I know that ad ran a little long, but it's very important, and there's a lot to understand. Trial net.org forward slash juicebox. When they ask how you heard about them, please choose Juicebox Podcast with that drop down box

I hope you have a great day. I'll be back very soon with another episode of The Juicebox Podcast. He need information about the podcast, check out Juicebox Podcast comm you looking for management stuff, go find those pro tip episodes, they begin at episode 210. You're also looking for the defining diabetes series, how we eat afterdark algorithm pumping and all of the rest. Check it out at Juicebox Podcast calm. And don't forget about the private Facebook group Juicebox Podcast type one diabetes, it's completely free and has 17,000 people on it talking about diabetes. Alright, listen the episodes over. But if you want to hang out for a couple more minutes, I'm going to explain to you why I think taking the survey at the T one D exchange is so important. If you don't want to hear it, it's cool. Just push up and go listen to another episode of The Juicebox Podcast. I'm here to ask you to join the T one D exchange registry. And that sounds like a lot something to join. Right. But you're really just taking a survey. Why am I asking you to do that? Here's why. The T one D exchange is a nonprofit research organization dedicated to accelerating therapies and improving care for people living with type one diabetes. So that's a very official statement from them. It's 100% True, but it's also kind of dry and boring. And, you know, I understand if you're not super excited by it. Here it is bare bones. You go to this website, you answer a few questions, it takes you less than 10 minutes. You can do it from your phone, you can do it. You know, while you're sitting on the toilet, if you want to, I don't really care. Although you shouldn't sit too long, because well, anyway, you don't want that problem. Let's get past why you shouldn't sit too long on the toilet and get back to this. The T one D exchange does good work for people with type one diabetes. It's why I took on this thing. They came to me and they said can you help us get people on the registry? I said I could try I don't know if I can. And I've gotten a lot of people on the register, I'm not gonna lie to you a lot. But this is diabetes Awareness Month and I thought maybe, you know, maybe you'd be in the Spirit to help people with type one a little extra. In November, the T one D exchange still needs 1000s of you to answer the survey. Why? Well, because they translate real world experiences into real world solutions. And those solutions make lives easier for people with type one. It's their goal to help type one families through research at the clinical level, through their quality improvement collaboration. And through research at the personal level through their ti 1d Exchange. Now, what's the exchange, you can read all about this, by the way AT T 1d exchange.org forward slash juicebox. But I appreciate you listening to me as I explained it to you. So the exchange is a research study that's designed to gather evidence real world evidence firsthand and to gather it easily and quickly through the survey. The questionnaire can be done anywhere from your mobile device, or you know, like I said earlier on the can if you want doesn't matter to me, it could be laying in bed, or just while you're sitting around at home. And since type one is a chronic condition that people live with their entire lives, participants can complete the questionnaire annually if they want to help researchers understand surviving living with type one. So imagine what this is, is you're helping with type one diabetes research without leaving your home. You don't have to go to a study center or sign up for some long thing that you have to be in for months or travel for. It's a way for you to help right from your house. Now, there may be opportunities later I've seen people on Instagram send me pictures when one girl sent me a picture of herself at the airport. She was on her way to go do a study that she was going to be paid for actually. And she learned about it through the tea Wendy exchange and was thanking me because I told her about the exchange. I can think of another person that I saw online, who is in the middle of a study for adhesives for a very popular CGM. She had a bunch of adhesives all over her and she was testing them. That was the thing that she was getting paid for. Now, not everybody gets paid for things or gets chosen for stuff, but that opportunity does exist. But you won't find out about it unless you sign up. And you know, complete the survey. Now you don't have to do those other things. They might contact you with an email and say, Hey, you want to do it at ease of studying you might go? No. And that's it and no harm no foul. You haven't hurt anybody's feelings. So that's it really it's super simple. It's T one D exchange.org. Forward slash juicebox when you get there click on join the registry today. And then answer the questions. I've done it. The answers are incredibly simple. They're not probing or terribly personal. They're general stuff about living with type one diabetes, and then you finish the survey. And that's it. You've helped them. You've helped people living with type one diabetes, and you've supported the podcast.

Alright, let's go for it. Right. We have all of November. I don't know how many we can do. I think we could do a lot. Honestly, 30 days, what do they say 30 days out in November and April, June and December all the others up 31. I don't really know all the words to that. Not really the point. But I can tell you this. I have a calculator right here. If I take 1000 123 zeros and I divide it by 30 days, 33 people a day and we'd have 1000 at the end of the month. 60 people a day 2000 It's doable. There are so many people listening to this podcast, if just a small percentage of you did this, we'd make a huge difference.

#575 United in Manchester

Bob has type 1 diabetes and so do his children.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Alright friends, this is episode 575 of the Juicebox Podcast

Bob comes to us today from Manchester, England, he has type one diabetes, and he has children with type one diabetes. He's an absolute delight to speak to. And I think you're gonna really enjoy this. I have nothing else to say about that. So, you know, settle in and soak up, Bob. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan, or becoming bold with insulin. For those of you who are worried right now that I'm going to do a ton of bad British accents and things like that. I don't even do it once. Never. That was it. I'm just I shied away from it. I'm embarrassed. I didn't try. If you're a US resident who has type one diabetes or a US resident who is the caregiver of someone with type one, please consider going to T one D exchange.org. Forward slash juice box and taking the brief survey that will help people with type one diabetes and support the show T one D exchange.org. Forward slash juice box

this show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored by touched by type one, you can learn more about them at touched by type one.org. Also on Facebook, and Instagram.

Bob 1:55
I think I mentioned my email I used to do podcasts for like a board game. I used to play X Wing Little Star Wars spaceships. Yeah, that's that's really popular, you know, they're getting, they're still doing the show. And it's been about 1000 listens a week, something like that. So that's pretty good. And it was it was just such effort. And then when we started the idea was we do a number of short shows every week, sort of 1520 minutes, but there was just too much to talk about, particularly when I was on I can go on and on. So it just got a bit out of hand. And then I'm not playing so much anymore. So I'll let the other guys take out with that. But I kind of miss it. And I do like listening to myself, which is quite advice.

Scott Benner 2:39
Yeah, I think that's a mental illness. I don't actually, I'll listen once in a while to make sure like I'll pop open different players and different apps, there's just see that the show sounding the same over different platforms. And you know, sometimes you'll throw it on on the cars through headsets just to listen to my daughter's like, are you listening to your own podcast? I'm not just checking the audio, and then I'll like laugh and she'll go just laugh at yourself. And I went no, no, I don't think so. So

Bob 3:07
I did use to catch myself sometimes I've listened in a couple of weeks after it came out. I'm like, actually, that's a really good gag. Well done. Well done. They're funny.

Scott Benner 3:16
Yeah, you know, it's possible you do have a problem. And you're like, Oh, that guy's hilarious.

Bob 3:21
Yeah, absolutely. Absolutely.

Scott Benner 3:23
I just think that anyone who does it for a long time, and it and it doesn't generate money. That's a passion because it takes so much time. Like I don't, I mean, honestly, at the rate that I put podcasts out, if it didn't have advertisers, I just couldn't do this. Like I you know, I wouldn't be able to people who do um, I know that a lot of people in the internet like age or are trying to make businesses and places that maybe people don't see businesses all the time. And it's amazing, but it's a ton of effort especially to get to the end and find out that you had a lot of fun, but it didn't it didn't catch on with enough people for it to become like a viable thing that you could keep doing. It's just it's a ton of work. So I think with you

Bob 4:09
the advertisers are pretty cool. I mean, it's very directly because of because of juice box that I got an omni pod. And yeah, absolutely, absolutely understand. And I got a control next as well as a result and all that sort of stuff because you hear about these products and literally I trust you. And because I listened to what you say I do the things you told me to do, and it kind of works it doesn't work stunningly but it works a hell of a lot better than it was doing before. I mean I'm not one of those flatline guys, I still I still bump around quite a bit but then I have a really very diet so that doesn't help. And I'm you know, I'm pretty happy where I am and that sort of 6.1 with a one C which is much better than it was even two or three years ago. But it's the tech the tech it's amazing. Yeah, and you can

Scott Benner 4:56
do me this favor because I liked what you just said I want to leave it in So Introduce yourself very quickly.

Bob 5:02
Okay. Hi, I'm buddy. I live in Manchester in the UK. And I was diagnosed with type one diabetes all the way back in 1985 85.

Scott Benner 5:13
Wow. How old are you? How old? Were you?

Bob 5:18
I was 30. Shortly before my birthday, we do the mouse.

Scott Benner 5:24
Oh, so you and I are almost the exact same age. Yeah, pretty much. Pretty much. Yeah, no kidding. That's interesting. You know, it's funny, because you're just talking about, you know, finding, you know, technology and things are better, but they're not, you know, super flat all the time. But you come from a time where just the expectations were so much different, right? Like, oh, yeah,

Bob 5:49
it was when I was diagnosed, the the regime was humanite and cumin s, mixed together. And they were both good for about 12 hours, although nobody suggested that I should take them 12 hours apart that might have helped. And the the diet was 50 grams of carbs for breakfast, 20 grams in the middle of the morning. 50 grams of carb for lunch, 10 grams in the middle of the afternoon. 50 grams in the evening and 20 grams before bed. And that was every day. And I was I was 13 when I was diagnosed. And we stuck to that for maybe two or three years. And then I was a sort of I was teenage, I got into going out and having fun and misbehaving. And I discovered that I could sort of skip the snacks and not hypo. And that was okay. And then my dose adjustment because I hated doing fingerprints, absolutely hated fingerprints. And in fact, when I was diagnosed, we weren't sent home sent home with a fingerprint kit. We were sent home with urine tests. And the idea was I do one of those every day, but they're basically meaningless. So I had no real idea of what was going on. And then HBA would see checks came in after a while and I got a finger stick set after a bit and the doctor's advice was maybe try and do one every day, just to see where you are. And it was my numbers actually weren't when awful. I think the first time I had an HBase on seat, I was something around probably about an eight. So it wasn't it wasn't completely out of control. At the school I was at there was a lot of exercise exercise was every single day, seven days a week. So that probably helped quite a lot. But the only dietary change was don't eat sugar in anything, any product with with granulated sugar in you just don't do. It doesn't matter whether it's it's chocolate cake with a load of cream, or jelly babies, which are basically pure sugar just don't have any white sugar products at all ever. Unless you're low, at which point you can have a dexterous tablet. And that was that was the regime.

Scott Benner 7:58
Yeah, for years,

Bob 8:00
years and years. I mean, as I say, I didn't stick to the diet so much. And I got to university when I was 1819 90. And then I had about 10 years where I knew that I should change doses. But the doctors weren't particularly useful on suggesting trenches. And at that stage, you know, I was okay, I felt good. The HBA one sees a hand we're by the standards of those times. Okay, so I didn't go every every six months or even every year to see a doctor. I'd skip them. I was moving around quite a lot with University I studied at Oxford and then had two years in London, before coming to Manchester. So what I did was, I would just up my doughnuts every now and again. Until I found I was quite regularly hypo. Which isn't isn't smart, really hindsight.

Scott Benner 8:51
You know, it makes me wonder. So if we, if we took this step of defining type one diabetes, by its management, and not the not the actual impact on your body, or that kind of stuff, and we just defined a disease by its management. You have a completely different diabetes today than you did then. These are these terms. They don't recognize each other at all.

Bob 9:16
It's it's been kind of a step change I moved in. It was only probably about 2010 that I moved to Lantus lodging and Nova rapids and the traditional sort of modern Basal Bolus technique and that that did help me the problem again with that was they would tell me what doses to use, and they just sort of said, well see how you get on. See what see what works. do plenty of finger sticks, and I'd always be very much don't talk about diabetes. I am not disabled. I don't have a disability. I can do anything. And I did. My wife and I we traveled all over the world. I did bungee jumps in New Zealand. I flew from Manchester to Las Vegas. For 48 hour weekends where I didn't sleep, I didn't want to get on the plane. And I had a genuinely sort of crazy time for my young adult life. Until, yeah, 2010, they sent me home with the the new regime, Basal Bolus, said, see how you get along. And there wasn't really even a broad idea. I didn't know whether I was taking 40 units, or Basal or 20. So I just sort of experimented a bit and worked it out. And at that stage, I was still having some pretty catastrophic iPads. They now happily are a thing of the past. But over time, I've been hospitalized a few times. And my wife still talks of the time when, you know, I'm doing this guys would come out and think of myself as a particularly sort of big or strong guy, but it would it will take two guys to hold me down while they've got some glucagon in me. Because I'd be thrashing about so vigorously. Yeah. It's it's, one thing was I never learned to be particularly terrified of hypose in the way that some people seem to be, you know, dead in bed was not a phrase I heard when I was introduced to diabetes. And it wasn't a phrase I heard until the last five or six years, I understood they could be lethal. But that happened quite a bit. And I seem to get over it. And that was that was okay. I mean, it's obviously a very bad idea. But it was sound. Management just wasn't great.

Scott Benner 11:32
No, it's fascinating because you live through a tectonic shift in the way insulin worked. And so many people have that I've spoken to, but I mean, you really were, yeah, I sort of put it the same way every time. But they basically gave you some insulin and then told you eat on a schedule, eat about these many carbs. And if you're a one sees we're in the eights, then that makes, I mean, let's look for a second, I'm gonna pull up this thing real quickly. Never really thought about like this before. But if you're a one sees we're in the eights, then your average blood sugar was like 183, most that was an average or 10.2 for people working outside of the states. So that's your average blood sugar. And you have no real idea if you're achieving an eight a one C, because you're 50 for most of the time, and 400 Most of the time, the variability was never even, I mean, couldn't measure it, so there'd be no way to track it.

Bob 12:30
I mean, I didn't know at that stage that you didn't want your HVAC to be too low, because that would suggest that you're having too many hypose. And I mean, there are still some dinosaur doctors around to who say that kind of stuff. Because in those days, because you couldn't really measure the timing range or the level of fluctuation. The only way you're getting an HBO once the low was by spending a lot of time too low. Yeah. And then you bounced back up high. And so it was actually discouraged to be too low. I think I had something like a equivalent about 7.5. And the doctor was like, Well, you don't want to go a lot lower than that, you know, you'll be high paying a lot if you do. And that. I mean, it was just a different time. And I think what people don't get now is how really difficult it used to be. I mean, I am, I always sort of thought that I probably won't die with diabetes and the stuff that they do with the drugs now, which is pretty incredible. But it's more I'm actually in a really good place with it because of the technology. Compared to how things were really up to about well ready to buy my daughter was was diagnosed herself in about 2015.

Scott Benner 13:45
Is that what so you weren't, you weren't even using like faster acting insolence. Until, until that time, right?

Bob 13:53
I've gotten to know rapid maybe I don't know exactly when it was I think was about 2010 2011. And I remember I go to the summer music festival most years. And that's like a huge three square mile site with 300,000 people on it. It's all complete mayhem. Um, it's it's one of the few music festivals where it's just like a single site where all the camping is enclosed with the the stages, and there's like 90 stages. And I remember being there in probably 2007 And I've gone out for like an early morning walk and left my insulin at the time. And I remember thinking, I've got needles on me, but I don't have my vials of insulin. If somebody stops me at a music festival, for whatever reason and confines I've got needles on me, without any insulin to go now. That's the reason that's the reason I'm going to have a very uncomfortable day. And I remember the the rain started and it was like really quite dangerous. There was lightning coming down and all sorts of stuff. And they closed off parts of the site and I was stuck away from my incident. And there was just an no flexibility in the regime at all. So the potential for that being a problem was was really serious. Whereas with a Bolus Basal? Well, yeah. Okay, you had to you had to Basal. But take your bonus when you get around to having some breakfast. It's fine. And so yeah, that was that was 2007 I think so it was only after that I got into the faster acting stuff. But still, I was very much I can do anything, don't talk to me about diabetes, it's my problem, I'll manage it. I don't want to discuss it with anybody. I had, by that stage, a brilliant diabetes specialist nurse at my local practice on a local GP practice. And he sort of said some things to me like, well, you know, we can change this insulin. So I did, and that seemed to be better. Maybe you should get some education. Maybe he just, you know, find out a little bit more about it. Like, well, no, that's time off work. I don't want to do that. And I'm fine. Look at my experiences there. They're actually okay, because I was still living in a world where, and I was really pretty good.

Scott Benner 16:00
Yeah. Well, it's interesting, isn't it that, that when you really look like now from this distance away, that even at that time, it's not as if I wonder, I wonder, I'm trying to think of how I want to say this. It's not as if there was this rock solid way to manage diabetes in 1985. And doctors were like, here it is, this is the best thing we understand. And it works. It was just the best thing they understood. And I don't even know how well they understood it. Because if they understood it that well, when they handed you Novo rapid later, there would have been a lot of trepidation, they would have said, Hey, this insulin doesn't work anything like the insolence you've used prior. This is going to be a dangerous situation, we really need to figure out what this but they were just like, here it is. Now you figure that out.

Bob 16:48
Yeah, that's exactly how it was. And it was a little bit scary. I remember the first couple of days, I was traveling to Liverpool to do some work. And I was on the train and thought, I do not feel good. I really don't feel good. And I remember cramming sugar in before arriving at the meeting, whatever it was, I was going to it was quite scary making the switch because I thought I was doing okay, I thought I sold diabetes and sold my relationship with diabetes back in 1985. And, you know, it was as good as it was going to get. So just deal with it. And I didn't really pay a lot of attention to it. And I think, with hindsight, and I feel really lucky that something quite serious didn't happen to me. I mean, I go into my kidney checks and my checks and stuff, because I am I remain terrified of protecting my site. Well, the site is super important.

Scott Benner 17:46
No, of course and but besides the long term, things that you're worried about, I find that that, that transfer from those older insulins to the newer insulins, there are an entire generation of people living with type one diabetes that lived through that, who are all lucky to still be standing because of the lack of training, they were given about how to use the new insulin. And I'm saying that I don't think that many doctors knew the chasm that stood between regular and mph and, you know, a faster acting Novolog or Nova rapid or something like that, that these were these were two, basically two different drugs, just because they're both insulin didn't make their function even very similar. I mean, before you were just putting in a bunch, you're basically throwing on a heavy weight of insulin on top of you and then just eating at certain times to prop it up. But now they're giving you insulin that works quickly, and draws your blood sugar down really fast. And your your regular and mph didn't do that. That was that was never how they worked. And it's just it's I mean, it would be like if I gave you I don't know, like a a big pill bottle full of heart medication. And I said you about I don't know how many of these you're supposed to take you go ahead and figure that out yourself.

Bob 19:03
Just yet. Yeah, that's that's that's pretty much exactly what they said. Yeah, it just they didn't know. Well, CGM wasn't remotely a thing at that stage. So you could either do fingerprints every half hour, forget that. Or you could wait until CGM came along and try and understand diabetes. Right?

Scott Benner 19:21
Well, I think I'm sorry. I think it's important for people to hear because there is a difference between the machine that is healthcare and you and your personal story. So they're not the same thing. You know, the world is moving forward, insulins become faster. pumps work differently. You know, we keep moving forward. You have to keep up with that yourself personally, because no one really has the time or the wherewithal to go back to every person who learned befores way and reeducate them, you was difficult enough to educate you the first time. So it is a very personal thing that you need to do is to pay attention to the fact that what the machine is doing, what the world is doing and what you're doing. The goals are not aligned normally.

Dancing for diabetes, from touched by type one is approaching very quickly. It's happening on November 13. Have you gotten your tickets yet? Have you touched by type one.org Then you click on programs, and then you click on dancing for diabetes. When you get there you'll see this. There's a 21st annual dancing for diabetes showcase features award winning dancers raising funds to support those touched by type one diabetes. It's happening on November 13, at 7pm. At the Dr. Phillips Center for the Performing Arts and tickets begin at $15 Are you local head over there and click on Get your tickets. When you do that you'll be able to get your tickets. November 13 Walt Disney theater touched by type one you'll see all that right there. You make the clicky clicky you buy your tickets, you head off and have a great time watching the show. Touched by type one.org There won't be one thing better to do in Central Florida on November 13. I can promise you that. G vo Capo pen has no visible needle and is the first pre mixed auto injector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is G voc hypo pen simple to administer, but it's simple to learn more about all you have to do is go to G voc glucagon.com Ford slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk.

Bob 22:13
I mean, in practical terms, it's considerably easier to do that now. Because we have an internet. And you know, it's it's really easy to reach out and speak to people and meet people like me, which was was just impossible. 1015 20 years ago, and I remember going to university. And there was a second year there was a Lasu was a first year student she said oh, I gather that you and I have something in common? And she said oh, well, I've got diabetes, too. I was like, Look, I've never had a conversation with somebody else with diabetes. That's not That's not part of my life. I like to share with anybody else just and I never spoke to that girl again. And looking back on it, I think you absolutely can't. And I would have found thing to do to any other human being. And she was reaching out and trying probably the first person that she'd ever met, who had Taekwondo, she was new university turned around from home, trying to reach out make friends. And I just thrust it away from myself because I'm just not going anywhere near this. I do my injections, I eat my food, and everybody else can forget about it. It's not their problem. And it was it that is part of the problem with with education. And the way that medicines moving forward really quickly. And people aren't receiving education at the same pace, as scientific developments are moving forward. And that's a real shame. I mean, there's so many people who are struggling. And I just think that's just not necessary. You don't need to do that. And, you know, learn a little and get the meds,

Scott Benner 23:42
you have to have the energy and the information and the confidence. And there's just a lot you have to have before you start. And it's it's difficult to collect up all those tools when you don't even know what half of them are supposed to be. And you're already struggling. Like I mean, I'm obviously you you felt badly enough about it. But I'm thinking about that girl, like, you might have been like to her, you might have been a lifeline to her. And you're just in two different places. And she's may, you know, gosh, you think like maybe it was hard for her to say that to you. And then you know, it does make you wonder and not I'm not talking about you personally, I'm talking about everybody in general with everybody feels that way. And there's no one to reach to. And and how do you find these people? Like you said prior to the internet, there's no one out there. You can't can't make those kinds of connections. Well, I think it would be interesting to know from you if you have perspective on it. Because you live for so long the way you did and then you had a long transition through faster acting insulin before you got to see data that helps you understand it. Are you fundable? Are you fundamentally a different human being today than you were then because of insulin?

Bob 24:57
Yeah, I think well for me The big step on the journey was when my daughter was diagnosed when she was 13 years old, about five years ago. And I, we were, we've been away, I think I might, and the kids have been staying with my mom and dad. And we got there. And my mom said, Look, she's drinking an awful lot of water. And I think you probably want to test her blood. And I got the because at that stage, still finger sticks, got the finger sticks that are on, she was 20 something. And we drove it to our local hospital about an hour away from my mum and dad's. And there was quite a lot of tears in the car on the way home. And we knew then that she was was joining me in the tribe. And my wife was quite upset about it. Partly because I'd had such a not a bad attitude. But I'd been so private about it, it just wasn't something I wanted to be discussed. And my wife and I very rarely spoke about diabetes, even after something quite dramatic, dramatic have happened like like the the paramedics turning up. And I would just get really angry about any discussion of it. And we walked into that hospital, she was diagnosed, and I just sat there thinking, Well, I know all this stuff, that they're about to tell her. I know what I'm doing with this Basal Bolus business. And I sat down and listened to the education that she was getting, which was was really pretty good for newly diagnosed. And I after an hour or two, I started listening. And I realized that in the whatever it was 30 years since my diagnosis, actually, the doctors have been doing quite a bit of work. And they'd learned quite a lot of stuff. And it was stuff that I really needed to find out more about. And that really changed me, as a person, it wasn't so much that the incidence of change because I was still walking around in the dark without being properly educated. And her diagnosis really changed how I felt about diabetes, because I knew that it was going to be a part of her, it was going to be whether she liked it or not as integral to as her eye color, or how tall she is wishing that she was taller, or shorter, or fat or fatter or thinner or it's a different color dice is is just wishing, you know she's not going to grow any any taller. And she's not going to be any less tight one. And at that point, I stopped ignoring it. Because with a 13 year old, it was impossible to ignore. And I started to kind of think, well, I can either hate this, or I can get with it, and do well at it not just for her to make sure that her numbers are as good as they can be, but also for me. And I went in for another meet with my fantastic specialist nurse. And she said, Well, you should do this training course. And they have a four day training course they do locally. And it's single day over about four weeks. And I went in and sat down in a room. And it was the first time I had shared my life with diabetes with anybody else. And it was it was a slightly odd experience because obviously only bloke that there were 10 people in the room. And this was for quite a long period. And I was the only guy in the room with predominantly middle aged women, some some a little younger, for four days just talking through diabetes. And I think maybe because it was it was predominantly women, there was more discussion of feelings about diabetes with the education. And it just opened my my minds completely to the fact that I've kind of been hiding from it. For 30 years I haven't really got to grips with with who I was. And I've had quite long periods of pretty bad depression after the millennium, and I and they were you know, reasonably serious. I knew what time the last train from London past the the railway station which was a mile away from my house just in case I ever decided to go and stand in front of it. You know, I'd given real thought to I can't cope with life. And really, I hadn't analyzed in that way. But in fact I couldn't wasn't dealing with my diabetes. I wasn't embracing it. I wasn't getting on board with it. I felt that I wasn't in charge of my own body. stuff would happen that I couldn't predict that might well kill me before too long. And I was really struggling to deal with it. But then when my daughter was diagnosed, she sort of opened the door for me to start liking is probably the one word wrong word but certainly accepting diabetes into my life and it's almost a religious thing for me.

Scott Benner 29:42
Did you do it for yourself? Or do you do it for her or do you not think about it that way?

Bob 29:49
So sorry, seconds but I'm wondering

Scott Benner 29:50
if it felt like you were doing it for yourself or doing it for her. I mean, do you look at her beaten diagnosed and think oh, this is Gonna be her life, she's gonna hide a part of herself, pass out a lot and be depressed. He's like, did you look at her and feel like, like, your experience was gonna end up being hers if you didn't do something

Bob 30:14
to an extent, I think that probably puts it a bit higher than than how I felt because yet, alright, diabetes is a massive pain. But I've had a fantastic life. I mean, I talked about the depression. And and that was just so illogical, you know, I have a job that is reasonably high status, reasonably high income. It's fairly interesting most of the time, and I live in a lovely part of the world. There's a load of pubs within three minutes walk from me, which seems to be down to the ground. My wife is great, we have a great relationship, and I have nothing to be unhappy about. And yet, I still had this depression. And looking to to her when she was diagnosed, it was I didn't really see all the problems that I'd had as massive problems, because you play the hand that you're dealt, you just get on with stuff. And I certainly wasn't wasn't miserable about it, I just distance myself from it and looked at it as an administrative chore rather than a medical trauma. Yeah, even though we were having paramedics round at three o'clock in the morning. That's kind of weird.

Scott Benner 31:18
Yeah, that's why you couldn't talk to the girl at school, because you didn't have any real feelings about it. You were just, it was all nuts and bolts, you were just taking the steps that you were supposed to take at the right time. And then never thinking about it again, I imagine that for most of your life, most of the day, you did not consider diabetes at all.

Bob 31:37
No, no, no go for. I mean, it became almost an automatic process, were you having this many minutes in the evening this morning, try and make sure you remember to have lunch, otherwise, you'll be might go low. became a very sort of automatic process. And, and it was something I found very, very difficult to talk about with anybody. But when when Isabel joined me in the tribe, she, it was very difficult to load that anymore. She is an amazing girl. And it's very difficult to dislike any any part of her. She is a phenomenal young woman. And I'm extraordinarily proud of her like like every parents of their kids. And if she has diabetes, then I'll be extraordinarily proud of everything she does with her diabetes. So it doesn't make her smaller, makes it bigger, it doesn't make a weaker, it makes you stronger.

Scott Benner 32:28
So it tangibly speaking, if you ignore your own diabetes, or you allow yourself to treat it, like it's not a part of you, then you can't treat your daughter the way you want to treat her. You can't you can't see her the way you want to see her and how you have seen and treated her prior to this. So that's the shift right there. Like her diabetes probably saves you from the rest of your life being segmented up like it was.

Bob 33:01
Yeah, very much very much. And, and it was really, I think, psychologically, her being diagnosed made me engage with it, because I enjoy engaging with her. I enjoy being part of her life. And it's big for me. And I couldn't take diabetes away from that. So that prompted me to go and get some, some education and sit in a room with people like me, many of whom had been through the same kind of experiences at school and through their, their 20s with these older insolence. And we all had the same kind of common experience. So not really knowing how to deal with it. And we have this education. And it was it was just mind blowing. So it didn't work. It didn't work. But it was just the ideas were fantastic. And the knowledge was fundamental to everything I'm trying to do now. But it did not get me to where I wanted to be.

Scott Benner 33:56
Well, I asked you about that in a second. But, but it's just fascinating that, like a personal human connection is really what you lacked. And it's just so it just it runs right through every part of life. But I mean, it's one of those things that sounds obvious when you hear it said but yet it troubles and and weighs on so many people just isolation of any kind can be so difficult. I'm just I'm very much reminded of the notes that I get from adults who who want to tell me about how they've had diabetes for a long time and that the podcast has allowed them to hear people with type one. And they've never met anybody with type one prior something like that. It's just very cool that you're that you and your daughter got to be the beginning of your own little community then you branch out so you go to this class, but the class you said as as probably cathartic as it was for you emotionally it wasn't that valuable. management wise.

Bob 34:54
Well, it wasn't because the sea change on management is CGM. When I say CGM in the UK, Libre is huge, because it's NHS funding, whereas getting Dexcom funding on our system is really very difficult. So everyone's using the brain. And that really enabled me to manage my diabetes actively. But just the teaching, I had that that class as to how insulins were working. And as to how you could judge Basal and Bolus and get them into a better spot was was really useful. And the dietary advice about how carbohydrates worked, and how mixing carbohydrates with fats and proteins would alter the impact of those carbs was just really valuable to enable me to understand why my body was doing some of the things I didn't want it to do, I didn't really have a solution at that stage because it's it's bumping and nudging, and it's very difficult to bump a nudge within six, we'll need to be doing an awful lot of them. But the the human side of that class was fantastic. I made really good friends, my friend Jill, who struggled and struggled with her tight one. And she messaged me about two weeks ago, she was celebrating her first week of being 100% in range. And she's come a long way. I mean, she exercises a hell of a lot. She's a big dancer, and she cycles. And that is a good thing. But it does impact on management. And she's also a very low carb person. And and she struggled for years and years to get the numbers of the comptroller just had this last week of 100% in range, which is, is fantastic. I think back to when we met maybe five years ago in that room, and how difficult she was finding stuff and how she just didn't understand how she would go to bed a sudden wake up at 19.

Scott Benner 36:47
I, as you're talking, it occurs to me that I don't feel the full weight of the podcast. I just I don't I don't I don't know that I ever am going to I guess. Because as you're talking I feel I don't know, Gil, right? I don't even know you. And I I'm so elated for her as you're telling me that story. And I just It just occurred to me, I was like, I really don't. I don't know, you know, I guess unless I have diabetes one day, I'm never gonna really understand. But

Bob 37:24
what I mean, I'm not a big fan of, you've not had this experience. So you can't comprehend what it's like, you know, if I go to the North Pole, I'm taking a big coat, I understand it's going to be cold. But I do feel that with with Taiwan, maybe like other I use the word carefully. But invisible disabilities. Design disabled does not mean less abled, it just means you have a long term medical condition that has an impact on your life on a day to day basis. And that is absolutely diabetes. And the legal definition applies to us. So invisible disabilities are really hard to deal with, because they are very lonely. Yeah, you know, we can reach out and just see people living your life.

Scott Benner 38:05
So just because I'm good at talking about how to use insulin, and maybe I'm engaging or something like that, whatever. It's, um, you're making me? Don't worry, I'm not going to do this. But I would like to right now just stop making a diabetes podcast and just pick a different topic. Because I'm realizing that I'm wondering how much more there is about other people and other things in the world? That I wish I understood. Like, I don't know what it was about how you just spoke about Jill, but I, I? I mean, I know. I don't know, you don't mean? Like, I know, I don't have diabetes. I understand it. I think I understand it as well as anybody who doesn't have it could. Yeah, right. Thank you, but I don't, but there's just, there's a human interaction between you and her. That that means something to the both of you that I can't fully make sense of. I just don't have the perspective for and I'm wondering what else I don't have the perspective for in the world. And I'm wondering, and, and these conversations are how you find it. I just want to keep having more conversations with people and trying to figure out more about the stuff I guess that I don't intersect with in the normal part of my life. I just I don't know, it was very nice. What you just said, and it made me feel good. I might be a little unclear right now because I got thrown off a little bit emotionally.

Bob 39:28
Well, I think something that you say about the podcast episodes is that the ones with people talking are amongst the most popular. Yeah. And I think for a lot of people maybe because they are the person that they know, who has diabetes and listening to to all the hundreds of people that you've spoken with and listening to their stories and how they're managing and how things are and just their massive array of life experience. Right? It diabetes isn't stop anybody from doing anything. It really doesn't matter. In order to make the most of your life with diabetes, I do think it's hugely helpful to, to know that other people out there are other people going through it. Other people are dealing with it. I mean, my wife now feels a bit lonely because she's the only person in our house without diabetes.

Scott Benner 40:17
That's a good loneliness, I guess. But, you know, it really is. I don't know, it just it's me You said something a second ago about that people find the conversational episodes more. The I see more people listen to those. And it's fascinating because when people are in the part where they're, they're mining for, for understanding about management stuff, they don't even care about those people don't really care so much about the conversations, which I think is a mistake, because I think a lot of management stuff comes out in conversations. But yeah, but neither here nor there. So what you see is on the Facebook page, those people are are, they're voraciously trying to figure out diabetes. And if I, if I were to go up and say, Hey, I have an episode, I've done this before, just kind of amuse myself, like I tomorrow, I can put up a pro tip episode where I can put up a conversation with a person who is you know, and some description of a person living with type one, overwhelmingly, those people in that space will want the management conversation. Because that's the part they're in right now. Like, it's fascinating that, that you could live for 15 or 20 years with no real idea of management. And now because of measurement tools, you actually have a real chance of figuring it out. And I just hope that after those people figure out that management stuff that they don't do what you did, and just see diabetes as Pull lever, a throw switch B go live life, I think that you can't ignore the emotional part of it, you're not going to ignore it out of existence, it is going to come get you in some way. in some form.

Bob 42:01
Yeah, right. Yeah. I mean, I also, for me, I like about technology. I like tinkering with stuff. And I almost look at myself as a, like an old car in the garage that I'm constantly working on, to make it a little bit better, and it'll never be finished. I'll never drive it out the garage. Just like I'll probably never lose the diabetes, maybe who knows. But it's probably just going to stay in the garage. I'm always gonna be out there, making sure the sparkles are working, or the carburetor or whatever it is. And I like tinkering. I like learning more and getting better at diabetes.

Scott Benner 42:33
I do so you can? Yeah, I don't know. I do too. I love when somebody says something that makes me think like, oh, that's a great idea. Like I look, I understand how impactful fat is in a diet, right? And how it changes carbs and everything. I understand it backwards and forwards. And yet when you said it earlier, it it meant I found myself like inside thinking am I paying close enough attention to that. Like like then and just that little like Spark will make me pay better attention to it moving forward. And that doesn't, it doesn't happen if you and I don't don't talk like this.

Bob 43:14
Talking is the way through. I mean, I'm I love also sharing knowledge. I love learning and I love other people learning. I'm working mentoring someone else at the moment. She's a lady who was 53 at diagnosis. And she's having she started out I started chatting with her maybe three months ago. And she was permanently out of range. When her average blood glucose must have been something in the two hundreds. I mean, it was it was just crazy. And now she's having days where she's almost she's in certainly 70 80% in range. There is still a problem with the Basal she's crashing a lot at night. And that's not good. And we're trying to iron that out. But it's just talking about ideas and working it through. And I mean, as an amateur, I've got no medical qualifications. If I'm talking to somebody about the incident they're taking, I will be super careful. Super, super, super careful. And you know, she's going to get libre too soon, so she'll have an overnight alarm. And that will give me more confidence that nothing terrible will happen if we make some some bigger changes. But she can't get enough time with her with her doctors and nurses, for them to see the changes that that she needs to make.

Scott Benner 44:24
Are you happier now than you were in your?

Bob 44:28
Oh, unbelievably, unbelievably. I mean, it got to a stage just to finish the family story. My son was was diagnosed in fact, the moment I got that call. I was doing a commentary on a board game, sort of high level tournament and I was offered they were halfway through the game. I was chatting about what they were doing on the board, etc. And then they got this call from a wife. Yeah, Matthew is drinking an awful lot of water. I've done fingerprick and I've watched the sounds and I've done another fingerprick then I did a fingerprint with different machine, I'll meet with the hospital. So 12 months ago, he got diagnosed. And he is honeymooning beautifully at the moment. I think still, his numbers are lovely. And we rolled up at the hospital. And by that stage, I got enough education, enough confidence that I felt like I was the one educating the nurses, you know, they would come and ask me questions. And that felt very flattering. But it also felt that I'm, I'm on top of this now I'm in charge of diabetes, because I've put the the hard miles in of reading the books and you know, reading bright spots in my mind reading sugar surfing, find it and getting over the depression as well, which was was huge, because once I felt in control that kind of melted away.

Scott Benner 45:46
diabetes, your diabetes, super spreader?

Bob 45:51
Yes, definitely. There's definitely some sort of connection. And I was diagnosed at 13 years old, I think 11 months, is he was 13 years and 10 months. Matthew was 13 years and nine months. And I think that's just because we were a bit more students in signs with with the kids. When I was first diagnosed

Scott Benner 46:10
about your family before you, anybody else.

Bob 46:13
No, no, I had a grandfather with type two. But that's as close as we get Nobody I know, no thyroid. I have a cousin with really serious arthritis, which apparently has some autoimmune connection. But there's no particular family history of type one before before me. Wow.

Scott Benner 46:32
Look at that. And now, did you get all your kids? Or do you have more kids?

Bob 46:37
Just to just to to just the two kids. I've got the full set? Yeah, I got one of each. I said to the consultant. I saw her one evening after Matt was diagnosed, I brought you another one. And she seemed less excited about that than me, which was I was disappointed by

Scott Benner 46:52
Do you have those sandwich cards in England where you go into a shop and you buy 10? They punch at one time? And?

Bob 47:01
Yeah. I mean, I do know the team, the pediatric team at our local hospital pretty well. They're fairly conventional. I mean, they're they're good doctors. But they're a little bit a little bit conventional. And, you know, libre, the medics who been doing this job, that jobs, they've done those for 20 years or something, and now having to relearn everything, because kind of all the stuff before Dexcom and labor just doesn't matter.

Scott Benner 47:35
Right? Well, it just isn't important. What happens to the what's happening to those doctors is the same thing that happened to those diabetics back then, right, you were brought up in one generation of how to do it. And then there was a switchover. And some people were able to traverse that and some people got left behind. And now the same things happening to doctors, that CGM technology is obviously it obviously elevates your ability to manage diabetes, tenfold better, it's got to be more.

Bob 48:07
It's night and day, Brian, it's just a different way of life. And it means I use libre, with a with a mouse. So it talks to my watch. And I can I can just look at it and say, Okay, I'm 5.2 right now, that's pretty good. The nice healthy lunch I had today is settled nicely with insulin. And the libre was just a complete life changer. And it was recommended to me by a man who's an orthopedic surgeon who said, I've seen these things, they look really good. You should get one of those. And I was still at the stage of No, no, no, don't talk to me about diabetes, you know, I'm managing fine, leave me alone. And it was I think we have that conversation a little before his diagnosis. And, and I got hold of libre, probably maybe six, eight months, I had to pay for it at that stage. But it was just so good. I was like, I will stop the mortgage payments, I will stop the pension payments, whatever it is. Libra is the thing that my family needs to be spending money on for me and the kids.

Scott Benner 49:11
Now I agree. Can you tell me a little bit about that when someone showed you that technology and you didn't want to? Was that real anger? Like how does that fit?

Bob 49:21
Well, it obviously one word, it was more like I'm on top of diabetes. Don't you be telling me? Don't you be telling me how to manage things better? First of all, you're the wrong kind of doctor. And secondly, even if you were adopted, my experiences are okay. You know, I've consistently been told that since 1990. Don't you be introducing things that are going to tell me that I've wasted 20 years of my life doing the wrong sec. That's

Scott Benner 49:48
it, right. But that's it right there. Right. It's the time lost and you can't get it back. And so you don't want to know that the time wasn't used as well as it could have been because that's it crushing feeling but it didn't end up crushing it. Right? It liberated you?

Bob 50:03
Oh, yeah, it was, I mean, once I got into it, it was absolutely liberating. And as I say, it's night and day, night and day to have that information on hand all the time, we're having this chat, I'm telling you 5.2, which is 9192. Ish. And that is something I can tell you about just by looking at my wrist, you know, I'm not getting they're not changing the answer, like all good boys and girls do all the time. And then during the finger stick, and then waiting for the result. And then backing all the stuff back in the little box are the bag and get it and it's a process. Whereas now I'm just constantly in touch with what my bloods doing, you're to the point where I can tell you the carbohydrate content or different pints of beer, by what my Libra does, after I've dropped the beer.

Scott Benner 50:51
You're a really inspirational mixture of before and, and now. But you don't see, as often as I would like, it's just so hard to drag somebody from the 80s into the diabetes of the 2000 and 20s.

Bob 51:07
It's been a hell of a journey. I mean, it really has been, for me a massive, massive journey. Also, for the family as a whole, because I'm now in touch with diabetes. And I got involved working with diabetes UK, I sit on the non exec board for a thing called Daphne, which is the major provider of education for adults with type one in the UK. I'm really active on quite a few Facebook groups, including the juice box one, which I love, because people are nice. And we're understanding and they're open minded, and they exchange ideas. And instead of saying, Well, I didn't have the idea, it must be wrong. They're like, Oh, that's interesting. You know, Susan's on there looking at low carb, and not everyone is with the low carb thing. But she's she's courteous and polite and open minded and helpful about it. She presents it as a very positive choice rather than what if you don't do this, you're all going to die. And it's a lovely space. It's a really lovely space. And I love exchanging ideas, I've learned so much,

Scott Benner 52:08
I should knock on some wood. And at the same time tell you that as an almost 50 year old person, I feel silly saying this a little bit. But I am as genuinely proud of how that Facebook page operates as I am of many, almost anything else. It is really uncommon for people that many people to get into one space and talk so well about any kind of topic it just, especially on social media in general. So yeah, I don't know if how much credit I can take for how it works. But it I'm just thrilled that it works the way it does.

Bob 52:46
I think for me, part of your philosophy is about open mindedness, it's about using the tools available to get to the place that you want to be. And whilst it is a sensible, reasonable goal to get your blood glucose in normal range all the time. And that's that's definitely the ambition behind what you promote and what you eat what you teach. The ideas behind that it's not, well, you have to do it like this, you have to make sure that you eat you have these vitamins or you don't eat those foods. It's all about doing what works for you. Yeah, well, I think people really get on board with that

Scott Benner 53:25
in the history of my life. I have not seen one dogmatic thing work out well. Just haven't. And, and this is too important for people to fight about, you know, like, we don't have five years to figure out who's right. We don't have 10 years to decide which eating method like, you know, people make this mistake of when they the first time they happen upon something they believe it's the first time it's happened in the world. And because I've right and because, you know, I mean, like you know, you know, when you meet a 23 year old, it's like, I don't think these politicians have my best interest at heart. You're like, oh, did you just figure fascinating, you're right on top of things finger on the pulse. Congratulations. But um, but like styles of eating as an example. This is not a new argument just because we've renamed stuff keto, you don't mean like, yeah, people had these arguments in the 80s about and they didn't call it low carb, they just were like, I eat a lot of meat. Like that's, you know, I don't eat bread and I eat a lot of meat. That was how somebody talked about it back then it's not till until social media came up and the idea of branding something could lend lead you to making money with it, that people even bothered with stuff like this. But But my point is, is that I've been around the diabetes space online long enough to watch it ebb and flow. And I realized that we're not growing. We're just rehashing the same conversations with different titles. And I thought, why does any of this matter like Why is everyone busy trying to figure out the best way to eat, or the best technology to use or whatever, just like, Let's Get everybody as close to good as is individually possible for them without, without making them crazy or torturing them about how they how they eat, or, you know, what, it's up to us, etc.

Bob 55:21
But it's the one size fits all concept that this works for me. So therefore it must work for you. If only that were true, only there was one right answer for everyone, everyone trying to manage their blood glucose. And of course there isn't. I mean, at the moment, it seems to a lot of people seem to be chatting about which Basal insulin to use. And there's been a big study in the UK, which is out for consultation at the moment, comparing the impact of different types of Basal insulin. And actually, the result of that is the sort of study or studies thing, the result of that is probably going to conclude after the consultation that some of them worked really well, for some people. And some of them worked really well for other people. I mean, I really love to see, but when by the time I was, I was finishing my MBA before I got some, I love to see that. And that was by far the best for me. But then there's other people who do really, really well with blank, Sklar gene or whatever else it is. And the idea that those are sort of best, you know, this isn't a video game. It's not like a high school where your doctor will let you finally let you have the good insulin. You've got to experiment and try different stuff and just see what works for you. Yeah,

Scott Benner 56:34
no, it's fascinating how somebody can say something. And it doesn't have to be based on anything. And you're like, Well, I heard somebody say it. Now I would tell you, if Arden had to go back to MDI, right now, it would be my inclination to try to Seba, but that's just based on anecdotal stories that I've heard from other people. And if it turned out to not work well, for I would pivot in two seconds, like I don't sit still and let bad things happen, just because somebody said, Here's your insulin,

Bob 57:02
well, then you get all the information from people who are active on the internet, and the people who are active on the internet talking about their diabetes are also the ones are going to talk to their doctors about different insulins, because they're engaged. And then the doctor is gonna go, Well, you know, why don't we try some of this, to see the stuff that we've got now. And, and that may work really well for them so that other people who are succeeding with it are the ones who are talking on the internet about it. Whereas there may be loads of people using nonsense largely and have been doing it for years that's working for them, who aren't on the internet, who aren't really engaged with the conversation, right? And I feel I feel a little for those people because it's a big part of your life. It's 180 decisions a day, going to talk to other people doing this thing. It's not easy. It really isn't easy. Do this day in day out and talk to people.

Scott Benner 57:48
It's still tough, even with the internet for other people to find answers. I will tell you for certain that even though Arden's nurse practitioner was the first one to bring up Dexcom. And I've told the story about how she, she she started telling me about this kid in the practice who wanted to teach himself to eat m&ms. So he literally got a Dexcom just so you could eat m&ms. And, and then she was explaining to me how he got this flat line. And she was super excited because the kid could eat m&ms. And I was sitting there thinking, Well, if he could do it with m&ms, like I could do with everything, probably like what would stop me from doing it with other foods. But still, the leap was still difficult to make until a woman who none of you probably know named Lorraine, who was just very big in like diabetes blogging a really long time ago. I heard her say Dexcom. And then I that's when I took two and two as well. Now the CDE said it. I liked the idea of how she put it. And now I see Lorraine a person who is friendly, and I feel good about. She said she's trying it too. I'm going to ask about it. And then she's the same person who brought up a Pedro and I could listen, I can go back now in my mind and tell you I don't know if Novolog caused Arden's like drastic peaks and crashes or if I just wasn't very good at diabetes back then. And switching to a Piedra maybe partly just coincided with a time when I figured things out. But in that moment, it felt better a Piedra. In my best estimation in Arden works more gradually. There. It's not as like vicious. And so you can I don't know. I like it a lot. I know how to use a pager really well, I was not good at Novolog. Having said that, if you put Arden back on Novolog right now, I don't think I'd have the same experience I had prior because I'm better at it now than I was all those years ago.

Bob 59:43
But we're all we're all we're all biased. And I can tell you that fire school takes somewhere between 10 and 20 minutes to get going on the it will hit Isabelle within 10 and it will hit Matthew almost before he's drawn it up and You know he just puts need near his like his blood sugar and starts to go down. And that to me is is one size does not fit all the fact that that your doctor says and Novo Nordisk say, this is how the insulin should work does not mean that's how it's going to work. It's so you don't trust these guys, but you've got to do it yourself and look and learn.

Scott Benner 1:00:21
Yeah, what because even that there's numbers they give you they tested on however many people they tested on, and then these are an average of, you know, yeah, in 1000 people on average and started working within this time frame. But this time frame, it doesn't mean like you said, it's gonna be the same for you, I love the way he works. It seems to make Arden feel a little bruised at our spots. So we don't, we haven't, we tried it a couple of times. And she's like, she gets sore from it. Like she feels bruised after the pump comes off in that spot. So alright, you know, that sucks. But I did like the way it worked. It was easier for us. And I'll tell you, the next person that comes out with another insulin that is supposed to work more quickly, I'm gonna try that one too. And it just keep going I the worst thing I can imagine, is complacency. In a space that is moving this quickly. And this positively, it just doesn't make any sense to sit still.

Bob 1:01:18
I mean, the terrifying thing is that the doc's are very reluctant to make decisions about treatment until they've seen studies. And that makes sense, because they're scientists, and they're relying on those studies to justify that decision making. But it's happening so fast, the changes happen so quickly, that they can't keep up. Yeah. I mean, I mean, for me, I don't know how excited I'm going to get about it. But the idea of a linear relationship between amount of carbohydrate and amount of insulin is obviously nonsense. Like anything yet, we're all taught it, we're all using it. But I know that if I have my regular breakfast, 22 grams of carb in there, I will take 5.25 units of insulin. But if I doubled that amount of carb if I woke up from really hungry, and I double the insulin, so I'm at 10.5, then I know that I will hypo two hours later, because it isn't a straight line relationship for me.

Scott Benner 1:02:18
So you need all that info that insulin upfront because of the piling on of carbs, but down the road, that leaves too much insulin in your system. Still when the carbs are gone.

Bob 1:02:28
I'm upset. Yeah, exactly. And yet, nobody wants to talk about finding some kind of differential equation and some sort of software to put that in.

Scott Benner 1:02:39
Yeah, you're not gonna find anybody to talk about that? Well, not when there's variability between people to people like, what what you what you're taught, is, it's an amalgam of everything they've learned about everybody that falls as close to the center as possible, that won't cause too many people, too many highs or too many lows. It's just, it's just trying to keep you alive. It's not trying to keep you healthy. And that's where it becomes personal then. And it's difficult for people to, to parse out that information and see it like you have no idea how many people I speak to, who don't see the correlation between different impacts of different foods. Like they'll just say, like some mornings, I don't know, like, it works great. And other mornings, I get really high later. How come? I don't know. And then you talk to them for hours upon hours on Days and texting back and forth. And then you realize, like, I now know how to ask and ask the question, so I don't have to waste the time. But they don't. That one day, they're telling you about a fried egg they had with a half a piece of toast and a cantaloupe. And the next day it's oatmeal. They don't understand why is it so bad. One two, I counted the carbs and I put in the insulin, same both days. It didn't work. And but people's minds don't make that leap. And and I don't not understand why like it's it takes it an investigative person to sift through that and not everybody thinks that way.

Bob 1:04:08
And it's about the compromises you're prepared to make in your life. When you have a thing during after the the first lockdown in UK finished, there was a thing called etail. To help out where our lovely government decided this was quite a nice thing for the restaurants at the time that they would pay the first 1010 pounds about $13 of your meal, or half of the cost of the meal if it was less than 20 pounds. So whichever was the smaller, but they were just trying to kill the restaurants because they were worried that nobody would go out because it was post COVID. And we're finally through the first way, there's definitely not going to be a second one. Look at that, too. But anyway, we went out there for 13 days in August and we ate out every single day. At different restaurants every single day. Were cooked the days when when the wife and the kids went away and they ate breakfast, lunch and dinner. And of course when We go out to new restaurants, new places, places that haven't been open for four months because of lockdown. You're trying new foods, and I love challenging myself to get them right. You know, I don't I don't go into meltdown if I if I hit 200. I do insulin. That's what it's for. And I live trying to get ahead of the meal to work out. Actually, I know there's a load of fatness, but there's a load of rice in it as well. Or maybe pizza. I mean, people talk about pizza, like pizza is one thing. And the difference between a frozen pizza that you might eat at home, and then the really nice Italian restaurant down the road, and the big chain pizza restaurant, those pieces are all different. They all work differently for me. Yeah,

Scott Benner 1:05:43
they might as well. They might as well be three different foods. You calling them all pizza is like calling diabetes in 1985. The same as diabetes in 2020.

Bob 1:05:54
Yeah, absolutely. Absolutely. And I love the tools. And they're great. And I believe in what I call di positivity. And there is no point sitting around feeling sorry for yourself about diabetes, a lot of people find it hard. And hard things are often unwelcome. But anybody who tries to do a poor you, you know, when I talk about about the kids, and they're in the team with me, like Don't you dare pity my children do not dare, they are grown up in a reasonably accurate household in one of the most comfortable countries on the planets, with internet in every room, you know, they are, they may have to worry about the planet in a few years time. But they are basically the luckiest generation of the board. And we're going to do a couple of injections before or before they you know, that's that's do not pity them. And diabetes makes them stronger, tougher, more forward thinking. It teaches them to prepare for things. And teaches them self management, all of that stuff. And I remember when I was at school, I used to have to go and do my injections in the evenings, because I had dinner to have an evening. And there was a teacher that you saw me doing that once. And she gave me this sort of sad smile. And that made me so angry. Yeah, that made me furious.

Scott Benner 1:07:19
Well, struggles good. Might not be it might not be preferable to get it through your health, but it's how you got it. And there's a lot to be made of it. So that's it, you get a you know, you get hardened under fire, right? Isn't that what they say?

Bob 1:07:34
Yeah, maybe? I mean, I think diabetes is science. It's reality. I know that people sometimes don't understand. But the answer to that is improve your understanding. You know, and don't spend time going, Oh, this disease is terrible. And the people who make me furious, and the people who say they don't want to have kids in case they get diabetes. You know, I ask

Scott Benner 1:07:57
that question a lot, just because I'm interested to hear the answers. And they've got such varied answers over the years. I don't know that I've ever I understand that you wouldn't want to hear somebody say it. And I understand when somebody says it to like I like it feels like they're so overwhelmed. They just can't imagine it again. And there's people who put it on themselves. Like, they feel like they gave it to somebody which is of course it's silly and silly and understandable at the same time. Like I understand you feel that way. And of course, that's not how anything works like you. You don't walk around being like, oh my god, I get my kid brown eyes. I wish they were blue. This is my fault. Like nobody feels that you know, like it's the emotion gets twisted up with the logic a little bit.

Bob 1:08:44
And it's about okay, diabetes fault for what it can be. And it teaches you all kinds of things about nutrition is he did an exam 16 GCSE which they all do. She the grades go from one to nine, and nine is supposed to be like one in 1000 kids will get a grade that high. She walked in and scored a nine in the feed nutrition exam, food tech, whatever they call it. She just got a nine because she walked in there with so much knowledge about food before she started. And, you know, that's that's just a bonus from diabetes. And I self pity is I understand how difficult people find I really do follow how hard some people find it. And and I think particularly for parents, you know, their kid has not turned out to be having the childhood that they were hoping for. Right? But don't let that stop. You're sad about that. You know that they're still having a childhood, they're still enjoying out 50 years ago, they wouldn't have be. And in fact, 30 years ago, they would have had really bad management and they'd be hyping all the time. Yeah. And that's not where we are that oh no,

Scott Benner 1:09:53
yeah, we like to say that the you know, back in 1920 You would have died if you were diagnosed with type one diabetes. There was no insulin, but you were diagnosed in 1985. And it wasn't great for you either. It's only become kind of what it is. I'd have to say in the last decade because of glucose sensing because of CGM, like, Yeah, this is the advanced right here, like you're living in the golden age of, of having type one diabetes, if that's the thing. It really, I mean, that's how I see it as well. Hey, can I ask you a question? Because there are a couple of things that you've said that I have to imagine that I understand. And one of them is that they might have trouble with the plumbing. Are you saying the sewer systems in England are getting old? Is that? Was that your inference? Or has your house only new pipes? You know, you said, you, you said that your kids live in the greatest and one of the greatest countries in the world. They don't have a lot to worry about, but they might have to worry about the plumbing. Oh, the planet,

Bob 1:10:56
not the plumbing the planet? Oh, thank

Scott Benner 1:10:58
God. I was like,

Bob 1:10:59
Yeah, I know, the plumbing. I thought this house

Scott Benner 1:11:04
is England filling up with it. And I don't understand what's the plan?

Bob 1:11:10
What's the plan? I mean, it's the thing that I mean, I travel in the states quite a lot. We really enjoy life over there. Generally, I think that the time will come in a few years where I'll be spending a lot more time there. And the the curious thing is that you describe something called a British accent. And I don't know what that is. It's how

Unknown Speaker 1:11:30
you that there isn't

Bob 1:11:34
anything like somebody from Liverpool, or somebody from London, let alone anyone from Scotland or Wales, and they're all places in Britain. And you know, you get really, really interesting accidents like up in in Newcastle. And I think what you guys often mean when you say Brushos, somebody who speaks very much like this as if they've recently been released from Downton Abbey. And that's not how we talk. You know, you do meet those people, but they're few and far between

Scott Benner 1:11:59
there is someone on once who I said privately afterwards, I said that I thought she sounded like Adele and I think she was insulted by that. But I couldn't tell why. So

Bob 1:12:09
well, there is a great quote that no Englishman can open his mouth about another English. Mm hmm. Okay. And, and the way we speak conveys a lot of information to people. Anybody who knows the northwest of England, where I grew up in, in Blackpool, which is like a little seaside town, a bit like sort of Atlantic City. And there is a, there's two types of accent in that part of the world. There's my accent, which is a broad, fairly gentle Northwestern Lancashire accent, but it rises at the end. And that wasn't something that came with Australian soap operas, people from my part of the world have always spoken with their sentences rising a little bit towards the end. And then there's a really broad, like Lancashire accent that goes like this with quite flat bones and all that sort of thing. And, and you can tell what kind of school people went to, as to whether they've got an accent like mine, or whether they've got the broad Lancashire and it's in where I live, there are maybe four or five towns around the north of Manchester no more than five or 10 miles apart. I can I can tell with a fair degree of accuracy which one someone was born in because of the way that the accent changes just from one town to another. Okay. So that of course, you know, you sound like you're from Burnley and you're walking around Blackburn which is the the rival town five miles away. Everybody with a Burnley accent will not be popular in button so that's the and there's also the plus thing as well. Yeah, I

Scott Benner 1:13:36
backpedal very quick. I think I found it delightful, but she she didn't like that too much. I don't think I forget.

Bob 1:13:44
Oh, Adele is a real Eastern BLUs okay. She's She's a proper, I was lucky enough to see Glastonbury and she sang to 120,000 people and it was like every single one of them she was going to go and have a gin and tonic with after the gig. It felt like she had the whole crowd in the palm of the hand.

Scott Benner 1:14:01
I've seen her live as well and it did feel like that a little bit like oh my god there there's that person I wish I knew personally she's standing right there. Yeah, has that feeling

Bob 1:14:11
she just genuinely a lovely human being but she is a real East End girls and from a pretty sort of working class background. And English people get very offended not not that they think the other classes are worse. It's just no no my identity is this class. You must you must put me in that unless the middle class in which face all the time you either pretending your upper class or working class depending on who you with. It's it's very complicated.

Scott Benner 1:14:37
It sounds it sounds it sounds more complicated than than diabetes.

Bob 1:14:42
It's yeah, but less significant.

Scott Benner 1:14:45
In I guess it doesn't make you past that. Unless you try to drink and keep up with people you can't drink with I guess then maybe it could.

Bob 1:14:52
Yeah, I mean, drinking is a really rich thing. It is a popular sport over here. But interestingly, the America seems to be doing divided into people who drink and people who don't drink. And the guys who drink really drink in America. If you were to order a whiskey in a bar in the States, you get like half a pint of stuff. Whereas over here it's it's a generous thimbleful. When you order a whiskey in a bar what then everybody, not everybody playing him instruments but but most people will enjoy a beer or, or whatever it's, it's, I remember going to there was one chain restaurants states were and they didn't serve alcohol. I was genuinely appalled. You have a restaurant without beer, but it makes no sense. But the the drinking culture is very different.

Scott Benner 1:15:41
Okay, well, I really appreciate you doing this and reaching out and wanting to share your story. And I mean, it's fascinating that you have this like, long tail of experience. And then you're also the parent of kids with diabetes to like your, you really have all there's a lot of wealth in what you were saying. So I appreciate you taking the time to record it with me.

Bob 1:16:05
That's really kind that's really kind and it's a privilege to be on. I mean, you are at the forefront of all of this. There are a couple of people who are heroes, for me with diabetes, and I've had a couple of amazing nurses. And I think what Professor Pathak cars doing for diabetes in the UK is phenomenal. He is absolutely they're fighting for us to get everything we need. And the stuff that you've been doing for us is building as well. So I'm very grateful.

Scott Benner 1:16:32
I'd say incredibly kind. I appreciate you saying that. I'm gonna stop now because this is where I get weird and sappy, so we'll just put

a huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kaipa pen at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGL? You see? Ag o n.com. Forward slash juicebox. And I'm not kidding, this is the last chance to get your tickets for dancing for diabetes. Are you in the Orlando area touched by type one.org, click on the program's tab, take on dance take on can click on dancing. Click on let's start over touch by type one.org Click on the Programs tab. I'm so sorry. Click on the Programs tab. Click on my brain. Go to touch by type one.org Click on the Programs tab. Click on dancing for diabetes, and then get your tickets. I'm so sorry. I don't know what happened there. My brain hurts now. Please don't let my ability to not remember what I wanted to say reflect on how you feel about touched by type one touch by type one.org. We're also on Facebook and Instagram, and they're wonderful supporters of the Juicebox Podcast you're gonna have a great time at dancing for diabetes. Hey, if you're a new listener, and you're looking for the Pro Tip series, there at Juicebox Podcast comm you just click the link at the top that says diabetes pro tip. There's a whole list of them there. You'll also see the defining diabetes series there. As a matter of fact, the website is pretty great. I can go to it for a second. tell you more about it. You would think I could do it off the top of my head but after what we just heard about the dancing for diabetes thing better if I pull it up and show it to you. When you first bring it up, there's links all across the top episodes. Pro Tips juicebox Doc's best anchor and boy here we go. juicebox Doc's best endocrinologist. Those are doctor sent in from all over the world by listeners just like you. There's an A one C and blood glucose calculator translates it's great, really just check it out. There's a link to the private Facebook group there. Knowing the signs of type one diabetes merchandisers, everything that's not the point then you scroll down. There's different ways to listen. There's just links for like Pandora, Android, Amazon, Alexa, Apple, podcasts, Spotify, Google, Amazon Music any way you want to listen, you click right there, that a little lower recent episodes of the podcast, you can click on them and I don't say this enough, but like here's one episode 573 You click on it. It's called adaption. diabetes has a short little one. You know blurb gives you some links to listen, you can listen right there on the web if you want. And there's another clicky clicky at the bottom says click for episode transcripts. You can actually read a transcript of every episode on their pages that are available at juicebox podcast.com. We scroll a little farther it's all the diabetes pro tips are listed there. The great sponsors Dexcom Contour Next One Omnipod T one They exchanged evoke I bullpen touched by type one that's there. Then you go down. There's some articles on the blog. If you like to read, do people still read if they do, that's their defining diabetes series, everything from understanding crush it and catch it, which is a phrase we use in the podcast to see peptide, hydration, all the tools that you use every day managing diabetes, described to you by me and Jenny Smith, very briefly, I think entertainingly. And helpfully, there's a lot of fillies and well, why isn't those words go down a little farther. There's diabetes, the diabetes variable series, little variables that you're going to run into while you're managing type one, and how to understand them. Sleep pumps, light placement, bad sites, growth hormone, a whole bunch of stuff there. Then we get down to the after dark series. Oh, so much goodness, they're eating disorders, diabetes, complications, divorce, bipolar disorder.

Geez, heroin addiction, bulimia, using psychedelics with type one, sex, drugs, booze, it's all there. type one diabetes and all the things that nobody else talks about. If you keep scrolling, you're going to come to algorithm pumping, which are episodes all about looping, and other algorithm based pumps. Like the mini med 670, G, and the control IQ. There'll be more coming soon about Omni pod five, and what other and what other and whatever. Oh, boy, and whatever other algorithms come to be. You scroll down more some of the more popular diabetes blog posts there. How I got to be bold. How to Bolus how I Bolus for Chinese takeout. It's a breakdown there's a breakdown there of how I Bolus for a high carb breakfast. It's just it's helpful and then the how we eat series How do people eat intermittent fasting flexitarian keto FODMAP Bernstein, low carb gluten free plant based carnivore vegan it's all their people have come on and talked about the different ways they eat. That's everything that's on the first page of Juicebox Podcast calm. Are you kidding me? You see how much effort they put into that? Once you go look at it. Alright guys, I'm so tired from talking like that. I gotta go.

#574 Swiper and the Map

Ariana is the mom of a young type 1, she also has her own struggles.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello everyone, and welcome to episode 574 of the Juicebox Podcast

Ariana is on the show today she is the mother of a young girl who has type one diabetes. And Arianna has some struggles of her own. Today we're going to talk about all of that on the Juicebox Podcast. While we're having that discussion, I'd like it if you could remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box and fill out the brief survey that you will find there. That's it. You'll help people with type one diabetes and you'll support the show T one D exchange.org. Forward slash juice box. Looking for community around type one diabetes, look no farther than the Juicebox Podcast group on Facebook Juicebox Podcast type one diabetes over 17,000 people talking everyday about type one

this show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also sponsored. I just pause so long that I forgot what I was gonna say. Let me do it again. This episode of the podcast is also sponsored by the Contour Next One blood glucose meter. Head over to contour next one.com Ford slash juicebox. To learn more about the most accurate and easy to use blood glucose meter that I've ever held. There. See I got it no problem. There are links in the ship. Boy, I'm a mess this morning here. There are links in the show notes of your podcast player and links at Juicebox Podcast comm to these and all of the sponsors. Please click the links. Alright, here comes Ariana

Arianna 2:28
talk and you talking at the same time?

Scott Benner 2:31
Hold on, you're being recorded now. So you know okay. It's weird. Okay. It's Oh, it's weird. Just not hearing just my voice.

Arianna 2:38
Yeah, I've seen pictures of you and heard your voice but not together at

Scott Benner 2:43
the same time. I have to admit, I don't normally look at people while I'm doing this, but I enjoy watching your smile. So Oh, yeah. Like you seem happy at the moment. And yeah, I've deluded myself into believing that's because you and I are meeting and you're happy? Yes. Oh, is that true? Yes. My wife ever hears this. I'm leaving this part in. Okay. So go ahead and introduce yourself.

Arianna 3:08
I'm Arianna. And I'm Dora's mom. She is almost eight, and was diagnosed. A little less than two years ago.

Scott Benner 3:20
Okay. So she was diagnosed when she was six. And I am now under a lot of pressure to remember as much about Dora the Explorer as I can so I can make silly jokes throughout the hour. We'll see what I can. At the moment, all I have is Swiper in the map. So we'll see where I go from there. Okay, she was diagnosed two years ago when she was six. Yes. Okay. Do you have type one? I do not know. Do you have anything celiac? Thyroid?

Arianna 3:50
Nope. Allergies.

Scott Benner 3:52
I have allergy sometimes to How about in your family line? Your mom Grandmother, father?

Arianna 4:01
No. In our family, there's type two, and gestational. And very, very distant. Like, great, great. Great. Great. Great, great aunt had type one.

Scott Benner 4:17
Yeah, that's a that's family line. Alright, and I can't the Dora have a dad. She has a dad. No, not your Dora the one from the cartoon?

Arianna 4:29
I don't know. See.

Scott Benner 4:30
That's what I've been thinking for the last 30 seconds. I'm like,

Arianna 4:34
I know Dora the Explorer. How to Mom. All right. Well,

Scott Benner 4:37
I mean, everybody gets a mom. But I mean, I guess everybody gets it, dad. So hold on a second Dora the Explorer, this assistant father.

Unknown Speaker 4:48
Yeah

Scott Benner 4:54
she does have a father. His name is Cole Marquez. He's the father of Dora. Isabella and a husband of Miami. He and his wife appeared in several episodes of Dora the Explorer. I hope he gets residuals. Okay, I don't think he I can't believe that. Okay. Dora has a father. How about your father? How about your daughter's father? We all together. Yeah. Nice.

Arianna 5:23
Watching them right now inside.

Scott Benner 5:27
Alright, cool. So we have a nice little family unit going on. Are there any other kids?

Arianna 5:34
Yes. A three year old?

Scott Benner 5:36
A three year olds. Oh, wow. Okay, cool. All right. So why did you want to be on the podcast?

Arianna 5:44
I wanted to talk about the struggles of the caretaker, with their own mental health and how it impacts the management of the child's diabetes.

Scott Benner 5:59
Okay. Is this something you're just wildly concerned about? For other people or something you're going through?

Arianna 6:06
Something having gone through?

Scott Benner 6:08
Let's start at the beginning then which is the best place to start. When Dora's diagnosed, can you kind of describe how it made you feel?

Arianna 6:21
A sense of relief?

Scott Benner 6:23
Oh, okay. Well, there was an answer I didn't expect. So she had been sick, I'm guessing and you didn't know what was going on.

Arianna 6:30
She had been having night terrors for about two years. And I'm pretty sure that that was her first symptom. Could they tantrums during out throughout the day, because of a lack of sleep? Right. And, you know, then it progressed. And about nine months before diagnosis, I took her to the pediatrician about her excessive water drinking. And she brushed it off as allergies. Okay, then we moved States

Scott Benner 7:14
took it away from that doctor for other reasons.

Arianna 7:18
For other reasons, um, and when we moved, we unknowingly traveled 16 hours in a car with the type one diabetic. And we had to wait about six weeks to see her pediatrician here. And she was very concerned, she was shocked that the pediatrician before brushed it off and came up with a game plan. And we found out two hours later, four hours later that her blood sugar was 1070.

Scott Benner 8:01
Jesus. That's insane. And that was the beginning. Well, let me go back for a little bit. Next question then. So dealing with night terrors for a long time with a young child. I mean, even if that's the only thing that ever happened. That seems like a lot. That's not something. Yeah, like when you're like, 1820 25 like you don't want me to get married and have a kid like you never think it'll wake up in the middle night screaming like someone's trying to murder it. So she was there. She wasn't she just seemed gone. Yeah. Alright. Okay. And so do you? Do you? Are you supposed to wake them up? Like, what's the process.

Arianna 8:43
Night terrors are similar to like night walking, or sleepwalking? Where you don't really want to wake them up because they're not awake. So basically, we tried everything not to get too deep into that still processing all of that and therapy. But it was tough, cuz some of the time I was pregnant, and then had a newborn and my husband was working nights. So it was not a fun situation. It definitely played a factor in my mental health.

Scott Benner 9:21
Okay, so that so let me let me ask you prior to this, did you have any issues with your mental health prior to that?

Arianna 9:29
Um, yes, but nothing to where I needed to seek help.

Scott Benner 9:37
Okay, so what I felt you felt okay. Can you give me like a brief like high level overview of how you felt prior to that, like what are the some of the things you were struggling

Arianna 9:47
with? Oh, um, some of its personal don't, but some of it was very last down. I was not present in my body. For context, my diagnosis is PTSD with depressive mood and anxiety. Okay. So some PTSD from a personal experience when his daughter was really when door was really little. That got suppressed a little bit. And then as the night terrors continued, it exacerbated everything, to say the least.

Scott Benner 10:37
Alright, so I'm very interested, but I think us having our video on is messing up our signal. Can you shut yours off? I'm sorry. Yeah, but let's see if that if that helps a little bit. So, okay, so you had something going on, we're not going to dig into. And it was, you know, it was there, and you were managing. And then you have a new baby, only a few years old, and she's having night terrors. And then that sort of just pushes you a little farther, I guess. Yes. Okay. And then it pushed you have much farther? Yes. Do you have context for why? Meaning? Was it the concern for her? Was it the adrenaline from someone screaming in the middle of the night? Like, was it the wonder of is, when is this going to happen? Like, what about it? Do you know?

Arianna 11:29
I'm, I'm sure lack of sleep played a huge factor. Because at the end, so in the last six months of her night tears before diagnosis, it was guaranteed she would have at least one that would last at least 30 minutes in the middle of the night. But then they continued. And sometimes it was two or three times in the middle of the night. Mind you. I had a new one. Oh, wow.

Scott Benner 12:00
So it kind of mimic the unpredictable scheduling. Some people will talk about low blood sugars, like get a low blood sugar overnight, you fix it, you think, Oh, this is it. And then 20 minutes later, it's low again. And like that, and so there was never the idea that a you were safe to go to sleep or be that even if you fix the problem, that it was gonna stay fixed.

Arianna 12:22
There was no fixing, and I had no one to help. She just lived through

Scott Benner 12:25
it. Yeah. Oh, so it's a process. So it's a problem. Additionally, that there's no fix for it. So there's just Wallaces happening. You just hold her or what do you do? Are they violent?

Arianna 12:44
I don't remember much of her night terrors other than they were horrifying. To have to not see your child in your child is an experience that's

Scott Benner 13:00
interesting. So she's like a zombie. And there's no connection to the kind of vessel you see in front of you in the person, you know?

Arianna 13:07
Yes. And her lack of sleep affected her daytime mood. Yeah. So it was a never ending cycle.

Scott Benner 13:17
And then are you saying that she goes on insulin and night terror stop? And that's that?

Arianna 13:21
Pretty much?

Scott Benner 13:24
Huh? Did a doctor offer you any explanation for that?

Arianna 13:30
Um, one of the diabetes educators in the hospital said she probably was type one for a while because of how high her agency was, and that it's not uncommon if you're sleeping and have high blood sugars to have wacky dreams or have nightmares. Okay. So, in my belief, and knowing my child, I'm 100% positive of the night tears were a result of high blood sugars.

Scott Benner 14:11
And they have stopped.

Arianna 14:13
Um, I think we had five diagnosis. And that was in the first two months after diagnosis.

Scott Benner 14:29
So in the last 18 months, you haven't seen one? No, oh, wow. Well, then let's hope that that was not. Yeah, but that's crazy, isn't it? Yes. So you, you move, luckily, and get to a doctor that understands that, you know, extreme thirst and small children's not to be ignored. You get your diagnosis. Did when the night terrors stopped? Did you go huh? Like is that The first time you saw the connection between that and diabetes like I imagine she wasn't diagnosed with diabetes, and you were just like, well Torres diabetes. I imagine these night terrors are gonna stop now that we give her insulin. Like I bet you you were surprised when they stopped.

Arianna 15:13
I'm sorry, I'm thinking Don't Don't

Scott Benner 15:19
be sorry. dramatic pauses are great. People aren't sure if you're crying. Oh, I wonder if she's upset? Do you think he made her upset with a stupid questions? People are not upset.

Arianna 15:34
I think I was more surprised at the light that returned in her eyes that had been missing. When she had been on insulin for 12 hours. It's quick. And then I knew like she had a massive night tear in the hospital that kind of scared some of the teaching doctors had X ray her foot. I won't go into details. Um, but I knew she had returned.

Scott Benner 16:08
That insulin hits her and you just sort of see the life come back and the person you know, in their face and everything is there all of a sudden?

Arianna 16:15
Yeah, took a while, you know, but I saw signs that she was back. And I knew and I knew in that moment that things were were better. There was a answer to the night tears. There was an answer to the mood there was I was gonna get my child back.

Scott Benner 16:35
Does that relief? lessen your burden?

Arianna 16:42
Um, I mean, it creates a new burden of caretaking.

Scott Benner 16:47
Well, yeah, no. Well, that's what I'm saying. That's what I was getting to, is it you you went from like, these night terrors, and this worry and, and the struggle of dealing with them and the endlessness of it too well, the night terror stuff put, we switched it for diabetes. And I was wondering if at least that felt my guess then it wouldn't have felt manageable in the beginning. It never feels manageable.

Arianna 17:11
Um, you know, I, some of the parents on your podcast, I've heard them be devastated. After diagnosis, I do not have that. I had, like I said, sense of relief. I had hope that was gone for a while. And while managing diabetes is not fun, or easy. It it was healing in a way. And it was a relief. And it I knew that my daughter was okay.

Scott Benner 17:57
Okay. I think having answers is an incredible relief. And even if the answer is, you know, you have to use insulin now. And there's parts of your pancreas that aren't working so great, etc. At least it's an answer, because the the not knowing to me is maybe just as bad as the knowing, you know, like, at least we know, you can do something. Yeah, yeah. All right. I believe in that. Okay, so what was management? Like in the beginning? I mean, what what did they teach in the hospital? And what was it like when you got home?

Arianna 18:33
Oh, um, you know, pretty much the standard of don't die rules for sure. I was actually lucky that one of the, actually, one of the diabetes educators in the hospital was type one. And the other had children that were type one. So they were living in it. And I didn't get the 1515 rule. I got the 10 grams of carbs for 15 minutes. Rule. So not as bad I couldn't imagine if we did 15 But she at least had the hay Dora's kind of small. We don't need 15 would probably be too many carbs for her. But other than that, you know, checking in. Oh, 274 Right now she's a month into diagnosis. That's fine. We're okay with that sort of thing.

Scott Benner 19:39
How much does she weigh when she was diagnosed about

Arianna 19:42
like 4849 pounds?

Scott Benner 19:46
Does she put any weight on afterwards? Haha, yes. Right. Because she it seems like she had it for a while.

Arianna 19:54
Yes. Um, yeah, she's she's a solid now.

Scott Benner 20:01
Oh, well, that's great. Hey, listen, I have a weird question that you might not know how to answer. If she didn't have night terrors. Was there other indicators about her behavior that would have led you to believe something was wrong?

Arianna 20:16
Yes. Can when I realized that it was really wrong, we were in the process of moving. So, and I obviously didn't trust her pediatrician. So what was I going to do? Um, yes, her obsession with water was so bad. It was traumatizing. Her obsession with food. Like she ate as much as a 300 pound football player would eat. Um, he didn't necessarily

Scott Benner 20:55
I'm sorry that that flourishes eating was that at the end before diagnosis or Had that been going on for a while.

Arianna 21:04
It increased over time. And I just thought it was a growth spurt for a while. And then it continued in three full breakfast, and then a snack and then two lunches and snacks. And like three servings of dinner is ridiculous.

Scott Benner 21:23
Yeah, there's a physiological reason for that. Arden, at the very end was like, could barely move. She was just she was a husk of a person. But still, if you put food in her, she ate like, shit, like a little kid you find in the woods in a science fiction movie. You know what I mean? Like that, like she's been gone for three months. And here they put food in front of you sit there and just like, pushes it towards her face. Arda was eating like that at the end and would explode. Yeah. With your and not passing bowel movements, or Yes.

Arianna 21:58
Oh, yeah, fine. Totally. I

Scott Benner 22:00
was fine.

Arianna 22:01
The thing. The thing that changed like was her body. She didn't really lose weight, because she was eating all the time. She was full of food. But she got incredibly skinny, but had like a pregnant belly.

Scott Benner 22:16
Interesting. At the, the handful of days before Arden's diagnosis, she was still in a diaper. And her bowel movements were hard. They were crushable like you, you could pinch them and they would break apart like, like a dirt ball that baked in the sun. It was yeah, she could barely get them out. Just really, I don't know I enjoying. I'm oddly enjoying talking through this with you. Because I am assuming it's in the last two years now that you know more dawned on you that she was really on the edge of death your daughter?

Arianna 22:52
Yeah, she um, yeah, there was some some real stuff going on that was extended, but, you know, health care providers that actually listen to you. Big deal, um, is incredibly important. And I'm so thankful for her pediatrician. And the fact that we moved and thank goodness nothing happened. I mean, feeding a diet unknown diabetic. pancakes and syrup while in the car, like it could have been disastrous.

Scott Benner 23:23
Yeah, you were close. You really were I wonder how long it was like that. But I mean,

Arianna 23:28
and she was the craziest thing she was only mild DKA

Scott Benner 23:33
Yeah. Well, it's interesting if her body was kicking back in once in a while and fixing that blood sugar and then driving it way up again and then you know, you could see why our by our system was all messed up and were those night terrors and everything. Okay, totally

Arianna 23:49
look back and have answers and go oh, yeah, she was eating because she was starving to death but and just the energy was so low. I'm like you don't go to a brand new park and then just sit on the grass. So there were things that were for sure going going on. But

Scott Benner 24:14
we stood in front of the ocean and she did not appear to know it was there I remember that I remember putting her down on the beach and she didn't have any reaction to that at all. She just scary stood perfectly still. Yeah it's interesting in hindsight, right? Where you can go back and figure out afterwards you know, like after like your, you know, your your spouse of 20 years cheats on you. You start going Oh, nobody gets fro yo every night it's seven o'clock. I should have figured that out. You know, there's there's the things that looks super obvious afterwards that during their during it, you just don't say, you know, totally,

Arianna 24:51
and we were living with my mom. Before we left willingly. Everybody thinks it's odd and I don't know In she's a retired nurse from the ER, and she was like there's something off. But like, I don't really know, like it was clear as day in our eyes. But like, she wasn't necessarily like dying. So was I really going to take her the ER, like I didn't with a newborn, I was highly confused. And then we moved in three weeks. So then it threw everything off.

Scott Benner 25:29
So are you younger, too?

Arianna 25:32
I'm almost 32.

Scott Benner 25:33
So you just look really? Alright, nevermind.

Arianna 25:36
Yes, I do. Like you.

Scott Benner 25:37
If you told me like, if you told me you had her when you were 12? I'd be like, Yeah, I believe that. Because you, you look very young. So I get that all the time. Yeah, I just wanted to be certain because that could be a contributing factor. If you are a really young mother, it's easy to not be as thoughtful about stuff like that, you know,

Arianna 25:58
I was very in tune with her. It's just you have a doctor that doesn't listen. And then you don't trust that doctor? And then what do you do? Like I don't? What was I supposed to? Like? I really don't know what I was supposed to do other than nobody wanted to take our insurance at the time. And I had a newborn like, we're planning on moving like, at a certain point. It's just kind of like, well, we'll get a doctor when we get there.

Scott Benner 26:29
You needed somebody in that moment to step forward and say, Hey, I see there's a real problem here. We're not coming to a resolution. I'm going to help you figure out what this is not put it on you to do the exact right thing with the exact right person that I think that happens with a lot of health care. Yeah, I don't I don't think it's I don't even know that it's anybody's fault. But it's just that if you don't, if you don't ask the right questions, and have the right things occur to you, and how are you really in control of that? Then you don't even know the right questions to ask to spark an idea in a doctor's head. And, you know, I've just learned over the years that there have been as many issues resolved in my family medically from us figuring it out. Yeah, maybe even more so than from a doctor figuring it out. Oh, yeah. Yeah. So.

Arianna 27:26
And then, honestly, it was lack of her pediatrician. Because so we had one appointment. I can't remember if it was November or December before her diagnosis, where she goes, it's just allergies, come back in a month, came back in a month. It wasn't getting any better. I stopped counting how much water she was drinking at 100 ounces. And that wasn't even the whole day. Yeah. So

Scott Benner 27:54
Well, here's the truth. But it's, it'll seem a little disconnected. But my son was given a steroid pack for something. And he was told, like, in a week, this will be better. Well, three days later, it was worse, not better. And I drug his as right back to the doctor's office. I was like, This isn't working. And I think most people would have just waited the four days. I just I don't I've just been through this one too many times. Do you know what I mean? There's Yes, once common sense, but you don't. But I'm not judging you either. for not doing that. I'm just saying that. It's it's uncommon for somebody to do what I did, and more common for someone to do what you did. And the

Arianna 28:33
only reason why I waited was because Oh, and she had said give her Claritin, I stopped after two weeks. I was like, this isn't allergies. I'm not giving her clarity and just to give her clarity. I have allergies. I've lived with them my whole life. I know what allergies are. It's not allergies,

Scott Benner 28:51
and excessive. Excessive thirst got you told Claritin for four year old five year old. Yes. Wow. Was it really a doctor? Did you meet this person at a strip mall by any chance?

Arianna 29:06
Um, no, she was her doctor from birth? Yeah.

Scott Benner 29:09
Geez. Well, hopefully it's really you're good.

Arianna 29:13
I'm just I had issues with this doctor. I took her. For example, I took her when she was little for a diaper rash that I was 100%. Certain that was thrush. On the Friday. She said it's not thrush. Fine. Then I went home. We spent the weekend it continued to get worse. If you let diaper rash thrush get worse. It starts to bleed. Let's just say that next Monday. I took her back to the same doctor. And she was like, oh, yeah, it's thrush.

Scott Benner 29:48
She figured it out. I told you that don't get sick on Fridays. That's a bad idea. You get I mean,

Arianna 29:55
like yeah, just imagine any issues.

Scott Benner 30:00
At three o'clock in the afternoon on a Friday, I come to you with a big problem. You'd be like, Oh, I'm so close to the weekend. Are you sure you can just wait three days for?

Arianna 30:10
The same thing happened with my second daughter? She told me it wasn't. I was like, it's thrush. Please just give it its thrush. Stop. That's interesting. So we already had issues with her. But there was the type of insurance we had we are lower income. Nobody was taking new patients with our insurance, so there was pretty much nowhere to go. So I just said, fine. It's allergies. I know it's not allergies. But whatever we'll try. It waited two weeks. Claritin did nothing. So I stopped. And then I decided to monitor and her water intake and stopped counting because I got to 100 and was done. Hey, we are back.

Scott Benner 30:59
I want to ask you a question. When you said we couldn't able to take our insurance. We're lower income is the inference that when you don't have a fancy insurance policy to throw around or money to pay, co pays or or you know, a doctor cash if you have to? If you can't get help, then you're I'm asking I don't know. Like, do you get less qualified doctors? Yes. So you get like the ones that couldn't get a job where they do take insurance and they can charge you more money, etc.

Arianna 31:36
I mean, they're definitely they have too many patients. Um, and you're kind of stuck, because the amount of paperwork that they have to do is more than they want to do. And more than they get paid to do. I do feel bad for them. Don't get me wrong, they have a lot to do. And pediatricians have child's lives in their hands. And they have to also deal with the parents too. So I do have an understanding. But it it wasn't just them. It was also me too. You shouldn't have to go to the ER and see your doctor six times before getting a referral to an OB for an ovarian cyst. So it's not just that, yeah, it's not. And it's also the area we were in, right? overpopulated makes a difference to Yeah, where where we're at now. Oh, we have absolutely amazing doctors, and the same type of insurance. And I, I wouldn't change it for the

Scott Benner 32:41
world. Okay, that's interesting, because that's what I was trying to figure out. And I'm not I'm not generally saying that, you know, it's not like the chef at John George doesn't work at McDonald's. I'm not saying that. I'm just saying that, you know, you start getting people with fewer job opportunities. And then you get and then you put them into it's not it's not a condemnation of the person. It's more of the system and just the I'm trying to look at it the way it works. Not for sure. Yeah, you know what I mean? Like there's just the way the mechanism works. So yeah, you know, if you're in that scenario is yeah, it's it's an unfortunate scenario, it really is. So, but now, having gone through all of that, you're also still you and you still have the issues that you're dealing with. So are you seeking out like therapy mental health like through this entire thing. G voc hypo pan has no visible needle, and it's the first premixed auto injector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is G voc hypo pen simple to administer, but it's simple to learn more about, all you have to do is go to G voc glucagon.com. Ford slash juicebox. G evoke shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G Vogue. glucagon.com/brisk. Just going to remind you here again, T one D exchange.org. Forward slash juicebox. Take the survey if you're a US resident. I just saw it again online the other day, someone put up a photo of their meter and their Dexcom. Why does this Dexcom not work? Look, my meter says this and Dexcom says that while they're holding up a brand new Dexcom, right, that's the latest and greatest technology that they have. And they're holding up a meter that looks like it's 35 years old and has been hit by four different cars. And for some reason they think the meter must be right. Well, I get that idea. And meters are amazing and everyone should have one but you can't use a junky one and then expect it to give you good results. Instead, you should find an accurate meter, something that is cutting edge, like the Contour. Next One, the Contour. Next One blood glucose meter has Second Chance test strips, which means if you touch the blood and don't get enough, that's no big deal, you just go back and get the rest, not to say that it needs a lot of blood, it doesn't. But I'm just saying, you know, sometimes you mess up. And you don't want to have to waste the test trip or have to wonder if the test result is inaccurate, because you've put on some blood and then come back and put on more Second Chance test trips. The Contour Next One is also easy to hold. And it's easy to transport in your purse or your pocket or wherever you keep your diabetes gear. It has an incredibly bright light for dark times, you know, not like dark times, like what was me, I can't get out of this funk. But when the lights are off, and there's no sun dark times, I guess I should have said at night. It's too late now. And it has an amazing app, if you want to use it, it'll sync to your Android or iPhone. Now if you want more data, right to track, it has that. But if you don't want to use the app, it doesn't matter, you can just use the meter by itself. And it's wonderful. It is literally the easiest to hold, most accurate meter that I've ever used with my daughter. Contour next one.com forward slash juicebox. On top of all that it's a really comprehensive website, website. Did I say website the first time, it's a really comprehensive website, that will explain everything you need to know. And you can even see other meters that they have there. In fact, there's a test strip savings program, you could look into some people are eligible to get the meter for free and the meter doesn't really cost very much. Actually, it could cost you less in cash than you're paying for your current meter through your insurance. And that crazy, you might be paying more through your insurance to feed test strips into your old janky meter that doesn't work, then it would cost you just reach in your pocket to buy the Contour. Next One. It's amazing. I mean, I'm not sure if that's going to be the situation for you. But you should go find out contour next one.com forward slash juicebox links in the show notes, links at Juicebox Podcast COMM When you support the sponsors, you're supporting the show.

Arianna 37:19
Yes, slow. On top of the night tears and having two kids, I noticed I needed some help. I was not feeling I was not there. So I'm where we were living before I sought help. And I saw her for maybe six months, maybe a little more. And then we moved on. And I thought I was okay here until I wasn't. And then my doctor was like, I think you should see a therapist. And I said I pretty sure you're right. Um, so I I sought out a therapist, which is a feat in itself. And I found one that I absolutely love who actually gave me a diagnosis. I hadn't had a diagnosis prior, or that I knew up. And I've been seeing her for about six months, and things are so much better.

Scott Benner 38:30
Hey, this is gonna maybe just be 100% Wrong. But have you ever been tested for hypothyroidism? Or Hashimotos?

Arianna 38:39
Um, I had my thyroid tested. Because my cycle decided to disappear. And it came back normal.

Scott Benner 38:52
What came back in range? Or do you know what the number was?

Arianna 38:58
Um, I could probably look through my stuff, but it came back in range.

Scott Benner 39:07
Sorry about that. The reason I ask is because the range for thyroid and this might not be your case, but but lack of energy, depression, hair loss, menstruation changes, all kinds of different things are controlled by your thyroid. And you'll get this test and they'll say oh, it's in range. But there are like ninja level thyroid doctors that will treat your thyroid level if your TST if your TSH is over two and there are plenty people who will come back at four or five and they'll be like, Oh, you're in range, you're fine, but a tiny bit of hot thyroid hormone ends up changing a lot of that stuff for people. So I've known people who and spoken to people who thought they were depressed who I really needed a thyroid medication who, you know, thought they had all other kinds of issues that need a thyroid medication. So like when you go look at that test, if that TSH is over two, it's worth going to a doctor that will treat your symptoms, not just the number. Does that make sense?

Arianna 40:21
I also had whatever the testing is for autoimmune diseases, because of allergies. Um, and because Dora has an autoimmune disease. And it came back negative. So

Scott Benner 40:41
they are the the, the antibody testing, they did that during the thyroid

Arianna 40:47
was separate. But yes, everything. Everything came back. Normal.

Scott Benner 40:54
Okay, yeah, I saw I can be 1,000,000% Wrong. I just get real sad when I know that people miss that. And it's such a simple thing.

Arianna 41:01
Oh, totally. There is some thyroid issue in my family history somewhere. I don't know exactly where but I've been told by my mother. That

Scott Benner 41:12
is, yeah, I would want to know what your test said. It came?

Arianna 41:17
Yeah, things came back in range. And you know, while there's always the possibility of, you know, something like that, I can tell you therapy has completely changed my life.

Scott Benner 41:32
Yeah, I'm not disregarding any of the things that you figured out your mental health at all, I was just saying, like, for everybody listening on top of you, like, you have to understand that when I'm doing this with you, I'm also trying to think of what the people listening are thinking about too. So of course, I'm doing a little of both talking to everybody. And just you at the same time, I tricked them. By talking to you, do you see what I'm saying. But I'm talking to the rest of you, unless you're hearing my voice in your head when you don't have your earphones on. And that in that case, that's not real. And you should see. And for all of you ladies that are talking lately about on popping up in your dreams, it's weird, but keep telling me, it's also under, thank you very much. Okay, so you're, you're getting better. And at the same time, you're figuring things out for your daughter. But to go back to what your email said about how the diabetes impacted your mental health. Is there anything you want people to know? Is there something you wish you had known? What did you figure out? And then I want to ask you some stuff about type one.

Arianna 42:41
I think I figured out that it's okay to let go a little bit. Because, because it's okay to let them be a kid. It's okay to focus on yourself. It's okay to not have perfect graphs, it's okay to continue to put in the effort. And all that it takes to learn and manage type one with a growing child. But it's also okay to take a step back and realize

Scott Benner 43:22
you don't have to get it all right on the first day.

Arianna 43:26
Well, even over time, I worked really, really, really hard in the beginning, I studied her graphs I headed down and then we got the pump to swim. Yeah. Things change, it's a totally different world and realizing, okay, you have to go back to basics. You You have to almost relearn diabetes, it's okay if extend Bolus does not work for your child. And it's okay to let go of striving for a number in the fives and a one C in the five, which is incredibly wonderful, but not at your own detriment. If it's hurting your mental health and doing more damage for you than good. It's okay to step back. I'm not saying sitting within a one seeing the 10s is okay. But it's okay to let go of the graph studying it's okay to put your oxygen mask on first and realizing that they're getting insulin that they probably weren't getting before, and that is absolutely better than nothing. And it's okay to step aside and focus on You so that you can be in the best spot possible to teach them how to manage their own diabetes. Okay.

Scott Benner 45:13
I, so there's a tipping point. And if it gets too far one way, then you're no help at all. Yeah, right. Yeah. And so you're trying to keep a balance of your sanity? and general health about type one? Yes, I gotcha. It's easy for the overwhelming nature of learning about type one to consume you. And then yeah, how to get lost.

Arianna 45:45
Yeah, and if you're somebody that has, you know, anxiety, and some of my anxiety has to do with her numbers, I've had to stop looking at her graph as often. Because it was it was taking over, it's, it's okay to, you know, I went from having her alarm at 122, putting out 150 for my own sanity. And that's okay, because we're still catching it early, and readjusting my goals for her, because she's healthy, she's growing. She's learning, she's smart. All of these things. She doesn't have to be perfect. I don't have to get her diabetes, perfect. If it takes, you know, five minutes of showing her because she's younger, how to read the nutrition label on something and judge how much she's eating, and how much insulin she's going to need, along with having her do the math herself. So teaching her those things, and maybe not getting insulin in her five minutes sooner just to do it. That's okay. Because she's learning something out of it. Okay, it doesn't have to.

Scott Benner 47:16
I'm sorry, I cut you off. But it was there. Was there beyond your own motherly instincts and your desire to do well for Dora? It? Was there anything that made you feel like everything had to be perfect? Like, why did everything? Do you have a knot? Why, like, tell me why? Because you're wrong. And you know, but do you? Can you imagine what the influences were? That made that feel like the most important thing in the world?

Arianna 47:46
Yes, because when she has high blood sugar for too long, I can see the child pre diagnosis. Okay. The mood changes. I was worried about night terrors. I was worried about the tantrums that happened I was worried about she fights with her sister more when her blood sugar is higher. So I was concerned about keeping my child that I got back.

Scott Benner 48:20
So where are we? How long did it take you to figure out that you couldn't do that?

Arianna 48:29
Um, a little over a year.

Scott Benner 48:33
Okay. And where's her a onesie at now? For example.

Arianna 48:39
I have no idea. We haven't had it. The last time we had it. It was a 5.7. And I felt which was great. And wonderful. And I cried, and I remember hearing your voice in my head, saying, This is what it feels like to you know, you're like, Hey, keep doing what you're doing. Like, see you next time.

Scott Benner 49:04
Yeah, like, it's just gonna stay here and you're just gonna keep it so. So are you tracking are on any kind of app right now? Like, since you've kind of made this adjustment to not being so closely guarded about stuff? Do you know? Do you know? I mean, can you guess where it is? Like through Do you have Dexcom? Like through clarity or sugar majors? Yeah. And I don't look at it. Okay.

Arianna 49:29
Um, I think a lot I mean, I look at it every once in a while just to see where she's at. But she's probably under 6.5. Like, I want to say on average, her blood sugar's around 120 Like an average for the day. But I I manage as we go, and I try not to look at I try not to Look at it so much, because I try not to keep her in the two hundreds. So I know, I know that she's okay. I know that, you know, above 140s, you know, there can be long term damage and yada yada. But I know that on average, you know, I do have my goals, I'd prefer her to be under 100 When she wakes up, I'd, you know, I look to make sure how stable her line was, if it was 150 all night, and stable. I'm cool with it. I'm not gonna like, I can't lose the sleep over it anymore. I can't hurt myself over it anymore. while still being safe. And acknowledging what's happening. I still try to catch the highs. Like I still, I still try to catch the lows, but I'm not so Dare I say obsessive over it?

Scott Benner 51:03
Do you think that they'll be enough time that can pass where your growth and understanding of how to do things in general will just lead to lower stability without trying?

Arianna 51:17
Oh, I've done it for sure. There's been days where I'm like, her blood sugar was around 100 all day, and I barely thought about diabetes. And it was super easy. So there's totally been days like that. But I think for my mental health right now and the things that I'm processing in therapy, that I I need to stay here for a moment. Need to continue to process you know the time in my life when she was having night terrors and how that affected me and I have more processing that I I have to do, but I will come back to it. Like I still every once in a while maybe like once a month I come back to Okay, let's reevaluate what's been going on like her her Basal rate at this time probably needs to be adjusted or you know, but I do give myself some more leeway, but she's not. And I think because I worked so hard in the beginning and got her a one C down to a diagnosis, she was 17.6 to a 5.7 in just over a year. Well, I think I gave myself some leeway to cut can I give us grace? Can

Scott Benner 52:45
I ask a question? If like this is hard to imagine, cuz I'm gonna make you make something up. But if whatever happened to you personally, the gave you the issues you have and the PTSD and all that stuff. If that did not happen in your life, do you think the diabetes stuff would have been less overwhelming?

Arianna 53:06
It probably would have been more how so? Um, I've learned far too much about myself through processing all of my traumas, and kind of what makes me tick. To to know that this is this is just something if I hadn't dealt with those things and learned what I've learned. It would have been harder.

Scott Benner 53:48
Are you saying that your trauma drove you to learn more about yourself which create a betterment that would not have existed without the trauma you wouldn't have gone and looking for that Betterment without it? Yes. Okay. So you have a better clearer understanding of who you are and why you do what you do. But you still have the residual effect of the actual thing that happened to you. Yes, okay.

Arianna 54:13
I, I have an understanding of what makes me tick, I have more understanding of coping mechanisms, and my communication skills have gotten so much better. And it's just made me that much stronger. Mentally. Then, like, I probably would, I probably would have had the same feelings that some of the other parents have just devastated and wishing for the normal. And, you know, just that loss that happens. Don't get me wrong. I grieved some of those things too. But going through what I've gone through, gave me this fire, this determination and strength within myself that I don't think I had before.

Scott Benner 55:21
Is there a pathway that you're looking for or aware of? Or is your therapist helping you? I mean, I want to ask you, okay, so to boil it down to simple stuff, right? If, if I walk outside and somebody throws a rock at my head, and it hits me in the head, and it causes me damage, and I can do the work to come back from the damage that it's done, but I can't seem to let go of the memory of the rock being thrown at me. So every time I go outside, I have this underlying anxiety. How do we let go of remembering that the rocket thrown at me? Is that possible? Is that are you hopeful about that? Or is that not something you're considering right now.

Arianna 56:09
There's so something I've personally been working on in therapy and what my therapist calls timestamping. So, and I'm no longer living in my trauma, there's a timestamp, that feels like a time that happened. Whereas when you're still in that trauma, it feels like it's still happening, you still like you still feel like you're in it. So some of my trauma has been timestamped, some of the trauma that has come from the night terrors, and all of that prior to diagnosis hasn't fully been time stamped yet. So it's something that I'm working on. I think, once I process some of that, and get some of that time stamped, it'll definitely bring me to a place where I can be more. I don't want to say more active in her diabetes management, because I'm still active. I'm the sole caretaker, I do all of that. All right, where I can come back to it with a more

clear mind a more present mind. So processing it is definitely needed. But I needed to process the other stuff. First.

Scott Benner 57:46
I don't have anxiety. But I know enough people who do and I've spoken to so many people that have that. I understand it, I think enough, you know, but I don't have any, like personal contextualization for the idea that that you always feel at like, I never feel anxious about anything. And so like, you know what I mean, I know, you've probably heard that and you're like, well bottle that because that I would like and so and so I can deal with and I think many people listening to this, who don't have anxiety, who I'm sure feel for you right now, but don't, again, have any context for it. They don't understand like when something goes wrong, I fix it and then I I never think about it again. And I never wonder if it's going to happen again. And that's a I'm realizing talking to you and having talked to other people in the past. What a just a general blessing that is to not have to worry about that. Because otherwise, you just always feel like a saber toothed Tigers gonna jump on your back and rip your head off. And you have that, that that heightened sense of whatever that is inside of your body. So do you take medication for that? Or is it just therapy you're doing?

Arianna 59:00
Oh, yes, I am on daily medication and then I have what's called emergency medication.

Scott Benner 59:08
So something like a panel or something like that if you have an attack, I'm guessing like to say but like in that in that range, like something that like lowers your heart rate and shows you the hell out like a lot of stuff.

Arianna 59:21
Yeah, it definitely brings me down to level two. Yes, so when there's some high stress stuff, I definitely you use that and along with my therapy coping mechanisms. I I try not to take the emergency medicine. Too often I tried to use all my skills and coping mechanisms first, but it's there when I need it.

Scott Benner 59:53
If I said to you, if I said fill in the blanks, my spouse does or doesn't understand my anxiety? Is it something it's difficult to explain to another person even though they're with you?

Arianna 1:00:10
Um,

Scott Benner 1:00:11
do you think the people around you really understand how you feel when this is happening? Or that it's happening constantly?

Arianna 1:00:19
These see you, I think I'm, I mean, I'm kind of, you can see to my face. Yeah. I don't think he knows what it feels like. But he knows what it looks like.

Scott Benner 1:00:35
And then what can he do for you in those moments? Is there anything?

Arianna 1:00:42
I'm currently learning some of that I'm helping, like, for, for some reason, his way of helping is I did the dishes. And I'm like, Cool. I didn't have to do it. It's one less thing that I have to worry about. And so taking some of that does help. But it's always the dishes for him.

Scott Benner 1:01:06
Well, you realize, in a boy's head, they're like, I gotta have sex with you. Like, that's the only thing we really can think of. And so then from there, like, I guess we're do the dishes, like, if that's real? I don't.

Arianna 1:01:17
I got kind of lucky. Well, yes. Those are lots of his thoughts. He's very aware of. Yeah, no, I'm not even touching that subject at the moment.

Scott Benner 1:01:28
I have to tell you, there are a large group of men who are listening right now, in the middle of like, you know, if you if you went down in a plane crash in a cold place, and you'd look like you're gonna die on the side of the mountain, the guy would be like, I don't know if sex would help. But if it would, I'd be willing to do.

Arianna 1:01:43
Yeah. Trust me, like, you'd be like, could

Scott Benner 1:01:48
you make a fire? And you'd be like, alright, but

Arianna 1:01:53
hey, is it like, the kids are asleep, like, what's going on? And I'm like, her blood sugar's at 200. I'm trying to get it down, leave me alone.

Scott Benner 1:02:03
So all of my ideas don't sound relaxing to you. I guess I'll go do the dishes.

Arianna 1:02:09
Like, fine. I mean, they're asleep. I'll play video games. Now. It's whatever, while I'm sitting there, like, will catch that.

Scott Benner 1:02:18
So what you're really saying is it makes sure I'm understanding is that unlike a person who doesn't suffer, the way you do, everything, the idea of everything that needs to be accomplished weighs on you, and ups, your anxiety. And so if someone can just come in and grab one of those packages, and throw it off of you, it's a lessening effect for you. But is there any time when it's gone? Do you ever just think, Oh, well, I'm not upset or worried or concerned about anything? Does that ever happen?

Arianna 1:02:52
Yes, but that is new.

Scott Benner 1:02:55
And that's for the therapy? Yes. What are some of the things that therapist taught you that are helping you?

Arianna 1:03:02
Um,

Scott Benner 1:03:04
please don't tell me you're going out and murdering, like, blunder bridges and stuff like that or something. Right?

Arianna 1:03:11
No, like, I'm

Scott Benner 1:03:12
sacrificing goats now. It's, it's really relaxing.

Arianna 1:03:19
Okay. Know, some of it's just come with processing it. Before. This, the therapist I have now I physically could not talk about some of my traumas. Like, physically, they'd run in my head, I'd say, Okay, I'm going to say it now in my head, and they'd get stuck in my throat. And instead, I would just cry. And I have found words, I found my voice with therapy. So finding my voice. And words for things allowed me to continue to process instead of it just playing in my head and getting stuck in my throat. So talking has helped. Being able to be vocal has helped. And then with that, I've learned I'm not living in it anymore, that I can sit in the present in my body and breathe and know where I am. And not feel like I'm stuck somewhere else. Okay.

Scott Benner 1:04:51
I want to ask you a question that I want to also tell you that you shouldn't feel any pressure to answer but I want to keep it really general but I just feel like you've shared so much valuable stuff here. But we lacked this specific context. So would you say that at some point? So let me just make some guesses out loud? If you want to say yes or no, that'd be great. Or just tell me to stop asking, but someone hurt you at some point. Is that right? Like it was No, it wasn't a person. Okay? Was it a physical or emotional injury?

Arianna 1:05:29
Um, oh,

Scott Benner 1:05:31
both. Okay. Something you feel like you had fault in or something, you know, was not from your hand at all.

Arianna 1:05:42
But I had fault. Okay.

Scott Benner 1:05:47
You carry a lot of guilt from it.

Arianna 1:05:52
I wouldn't say guilt, I'd say sadness.

Scott Benner 1:05:55
Okay, like one of those. If I had a time machine, you know, where you'd go back to and what you wouldn't do that kind of stuff.

Arianna 1:06:04
I would probably still make the same choice.

Scott Benner 1:06:07
Interesting. Because at that time, you wouldn't have been able to make a different choice, or because it didn't look like a bad choice in the moment.

Arianna 1:06:15
Logically, my, my brain is very logical, logically, completely right decision. Completely what needed to be done. So that's okay, but doesn't mean it takes away.

Scott Benner 1:06:37
What came. So you did the right thing for the right reason, but the outcome impacts you that right. Yeah. That's interesting. I almost like that. You're not going to tell me what it is.

Arianna 1:06:52
I mean, no, don't tell me. Warning. I can tell you seriously,

Scott Benner 1:06:56
you'll tell me but you won't tell everybody else. Yeah, oh, hell, then we'll get off. And you can totally tell me Yeah, screw the rest. I still gave you a good podcast. And so did she, okay, you can't be mad about that this is private. Well, I'm happy that you feel better, and that your therapy is moving you to this place. I'm happy that the diabetes stuff is manageable, and in a good safe spot, and that you feel like you might go back to it later and tighten it down. When you have the ability to it is super commendable, that you were able to take some time for yourself and some space for yourself. A lot of people struggle to do that. And you figured it out pretty quickly. It sounds like you were pressured into it by your circumstances to some degree, but still a lot of people still don't bend they just go down with the ship. You know, they mean you were like how about if we all stay alive when we figure this out and spread some of this horror out over over time.

Arianna 1:08:00
Not to get too morbid, but it got to a point where I couldn't continue living this way. But there was no choice but for me to continue living because of Dora. So I had to I had to make that choice to you know, put on my big girl pants and put work in it had to be done. I have

Scott Benner 1:08:35
to say that I imagine I could be completely wrong but I imagine that most people live in that general space that things that need to be done feel bigger than what you can accomplish that sometimes they don't feel in any way like a satisfactory lifestyle for you. You know people think oh I wish I was doing this or I wish I didn't have to do that but I do think that most people just do what they need to do. And I wonder if I'm sorry I wonder how much of like more recent society gives people especially in in in places like American other you know you know other countries like that that have the thing excuse me concentrating on the fact that I have to clear my throat instead of talking people that have conference like this you know even you know you the poorest people in America live better than other people in other places in the world right? Like if the idea that everybody can like we raise our kids like you can be president which I guess is not as great as it used to be but you know you can be president you can be the accompany you could be rich, you could be famous, you can be an athlete, we no one ever just like hey, you know what you could do? You could probably manage an Arby's like, you know, we don't talk like that, so expectations are super high for success for money when you're younger, and for happiness to everyone gets promised happiness. And I don't know that that's exactly the way life works. I don't think we all get to run around with our like two and a half kids and a Volvo station wagon and a house it has like, you know, it's got an acre, like I don't think most people have like I don't think that's really how it works out for everybody. My husband's grade he's home by 430 helps with dinner. You know, I wear you know, like it's not it's not Leave It to Beaver, I guess is the way I'm trying to say it. And, and yet people fight against it constantly, and it makes them miserable. The the expectation for perfection makes people miserable. Instead of just going like, this is my life. This isn't so bad. You know what I mean? Like, I'll be happy here.

Arianna 1:10:50
Sitting sitting and gratefulness is is highly important. Yeah. Be grateful for all that you have. I've had this conversation with Dora, where you know, she has days where I hate diabetes is what she says, I wish I didn't have it. Boy, do I wish you to have it. But be grateful for the technology that we have. Be grateful for the type of insulin that we have. Be, you know, just to even say yes, it sucks. I'm not saying that it does it. I'm not saying that's not hard. It's for sure. Not fun. But hey, you have this really cool piece of technology that people like, worked really hard on to make it so that you don't have to have a strict regimen like eating regimen and insulin regimen, where you can pretty much say, hey, I want a piece of candy, and then get the piece of candy.

Scott Benner 1:11:59
Yeah, there's a lot of a lot of perspective that comes with knowing that, you know, prior to 1920 ish, you would just be dead if you had type one diabetes. Like that's, that's not that's 100 years ago, that's a very short amount of time ago. You know, like you just made it like, think about it. If you were diagnosed today, you basically just made it in under the wire. Like it's Yeah, yeah.

Arianna 1:12:19
You know, knowing, hearing, listen to your podcast and hearing the people that have had it for 20 years knowing what the technology was then, even 10 years ago, five years ago. Yeah, but it is when she was diagnosed, I could not be more thankful.

Scott Benner 1:12:37
Right. But being diagnosed in the 60s, the 70s, the 80s in that range. I couldn't, well, all the scary stuff that you still hear today. Those stories come from that time, because that was expectation that you hear people come on here, who are like, I was told I wasn't gonna live to 30. Or, you know, people that come on tell you like, they were told, like, you're not gonna get to have kids, you're not gonna have a life, no one will marry you. Someone was told. Do you know what I mean? Like, that's not that long ago in history, been diagnosed with type one diabetes 3030 years ago, somebody might have told you well, you know, give up on all of your dreams and get your living in now, because this isn't going to last very long. That was

Arianna 1:13:19
the two things I think they said in the hospital was, she can do anything that she wants to do. She just can't join the military. And I was like, that's something. And then two was be a pilot. And they said, Well, that's changing. And it's changed since then. Fine. I mean, it. I highly respect all military. But coming from military, my father was in the military, I am relieved that she can't. So for me personally, I was like, Okay,

Scott Benner 1:13:57
anything. But I understand what you're saying. And I just think it's important, right? It's important. And it's not just important about diabetes, it's important about the rest of your life. I mean, listen, there's reason things are written on coffee mugs, and T shirts. The reasons are, if you would just believe them, your life will get better. You know what I mean? Just be grateful for what you have is a big one. Some people have more, some people have less, you know, it's not about more or less, it's about here, like you just need to be able to look up and go my life's pretty good. This is all right. I wish I had more. I wish I had that. But I don't. These are the things that I have the people I'm around, let me make the best of this. And if this is so bad, then let me find a pathway out best I can. I might not get as far out as I want to, but let me see if I can't keep bettering my situation. Yeah, that is some real comfort in in living that way.

Arianna 1:14:52
And, again, I have that that odd thing with diabetes where I was relieved and I have I have the gratefulness of my child his back that I get to live with every single day.

Scott Benner 1:15:12
Yeah. That's amazing. Okay, I, I gotta wrap this up. I'm running low on time. I apologize. But I'm very happy for everything that's happening for you. So far. I didn't get to ask you, but the podcast has generally been valuable for you.

Arianna 1:15:28
Yes, of course, I'm learning. I go back to the the Pro Series and you know, all of that to go back to basics to go, what am I doing wrong? Because sometimes in the funk of depression and anxiety, I forget things. And I go back and I go, Oh, yeah, I got to start there.

Scott Benner 1:15:55
Well, I know I've said this before. And you might have heard me, but I'm not embarrassed to say there are times where things get upside down here. And I, I stopped myself and think if someone came to me and said this was happening to them. Well, what I tell them? Yeah, and I think that's my version of listening back to episodes. I go, I would say to do this, and this and this. Okay, well, why the hell am I not doing that? And then, yeah. Yeah, I sometimes people say like, what would Scott say? Like, I sit in my house? And I think what would I say?

Arianna 1:16:28
That has to be a weird conversation in your head.

Scott Benner 1:16:30
I gotta be honest with you. One of the creepiest things I've ever done in my life is search for something in my own website. So like, there's like this weird feeling when you're like, oh, I don't know the answer to this. But at some point in my life, I did and I wrote it down. I'm gonna go look, and I'm on my own website, searching it that makes me feel very ridiculous while I'm doing that, like, why can I not remember this? And then there.

Arianna 1:16:54
It also shows how informative your podcast is, because

Scott Benner 1:17:01
well, at the very, at the very least, present Amy really does agree with you know, past me. That's why I joke about Jenny when people are like, I say how great Jenny is, but really, when you listen, Jenny and I agree about a lot of things, if not most things about managing diabetes, so like, do I do I like her or do I think she's smart? Cuz she but I shouldn't cast that aspersion I think Jenny's terrific. I'm just making a joke. But no, it's weird sometimes to have that thought. But I'm glad it helps you and anybody else listening who is valuable, too. I thought this was a terrific conversation. I want to thank you for it and I'm going to hit stop so you can tell me stuff you're not gonna tell other people so hold on was

a huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kibo pen at G Vogue glucagon.com Ford slash juicebox you spell that GVOKEGL You see ag o n.com. Forward slash juicebox. And also like to thank the Contour Next One blood glucose meter for being a longtime sponsor of the show and remind you to go to contour next one.com forward slash juicebox. Are you a US resident? Please take the T one D exchange survey AT T one D exchange.org. Forward slash juicebox.

Thank you so much for listening. I really appreciate your support. I'll be back very soon with another episode of The Juicebox Podcast.