Scott Benner 10/4/22 Scott Benner 10/4/22

#764 Make It Happen

Irene is the mother of a child with type 1 diabetes.

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

Scott Benner 0:00
Hello friends, and welcome to episode 764 of the Juicebox Podcast

What's up everybody today on the podcast I'm going to be speaking with Irene. She's the mother of a child with type one diabetes. I think she's got like 1000 kids or something like so many kids. And she's also a registered nurse. A looked back at the notes that she sent me before we recorded and I gotta be honest with you, I don't know if this is the stuff we talked about it or not. All I know for certain is that I had a good time talking to Irene. And that is always, always a good sign for the episode. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you are a US resident, and you want to help people with type one diabetes, you can do that right now. While you're sitting on your butt, go to T one D exchange.org. Forward slash juicebox. Join the registry, fill out the survey completely fill it out completely. And you've done just that. It only takes a few minutes. And it's completely easy to do. 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 today by touched by type one head to touch by type one.org or find them on Instagram or Facebook. What am I saying? Or do all three, go to touch by type one.org Find them on Facebook and find them on Instagram and then follow them and see what they're up to.

Irene 2:05
My name is Irene. I am a mother of six. My fourth child who is my oldest son is our t one D and I'm also a registered nurse.

Scott Benner 2:18
Okay, now you listen to this podcast.

Irene 2:21
I do I found the podcast. Let's uh he was diagnosed late December 2019. And I found the podcast probably like two to three weeks later and started listening to it on my drive to and from work.

Scott Benner 2:40
So the reason I asked is because when you told me you had six kids in your mind, were you like, he's gonna ask Oh, he's gonna have a field day. I just I don't even first of all, did you find some of them? Are they rented? Did you adopt them? Like are they all came? I don't want to be delicate, but that they all come through your birthday. They all come out of

Unknown Speaker 2:58
my business. So five out of the six did.

Irene 3:05
My oldest daughter is 20 years old. She is my biological child from my irresponsible college days.

Scott Benner 3:18
She know that I guess she does now but

Unknown Speaker 3:21
no, she knows it. We're very, like open discussion.

Scott Benner 3:25
So we're gonna call I have one through six listed in front of me. So I'm just gonna call number one kegger and then number she's only 20

Unknown Speaker 3:38
DC party clubs. Yeah, she's she's 20 years old.

Scott Benner 3:43
How old? Are they in order 20 than what?

Irene 3:46
14 Okay, um, and she is not biologically mine. She's biologically my husband's from a previous relationship that he had. And we married almost 13 years ago. And then we have four children together. And so then there's a 10 year old girl and a seven year old boy. And that's James. He's our kiddo with type one. And then the next boy is about to turn six and three

Unknown Speaker 4:23
weeks. Okay.

Irene 4:25
And he has some other health issues that were diagnosed right around when James was diagnosed. So we just had our our whole world turned upside down. And then there is the baby who is not really a baby anymore. He's two and a half. And at the time that both of his older brothers were being diagnosed, he was about two and a half three months.

Scott Benner 4:49
Yes, all this happened around three years ago. Is that right?

Irene 4:52
Yeah, we're like right around like the two and a half year mark from our diagnosis.

Scott Benner 4:59
Okay. I think I understand. And when at what point in this story did your vagina fall off? Was it as recently?

Unknown Speaker 5:09
So it was after the sixth baby. And I actually had of like, actually did have complications and for you. And we don't live in Utah. We're not. We're not practicing Roman

Scott Benner 5:30
Catholics. Did you hear? Did you hear it hit the Florida they get caught in your pant leg or what happened? Exactly. That's terrible. I'm sorry. That's so

Irene 5:37
you're fine. You're fine. No, but it's funny because the baby was born in September. And I was four days post surgery, like gyn surgery. When I was sitting on the couch with my husband one night, as James, who was never much of an eater told us that he had finished his dinner, finished his brother's dinner, he was still hungry and mid sentence ran for the bathroom again, and I was like, Oh, my God, he has diabetes.

Scott Benner 6:06
You're a nurse. And you knew.

Irene 6:08
And I was like, and we had just been talking about we had noticed the frequent urination for several weeks. But he had kind of had like other he just started kindergarten. He had had kind of other like, I don't like the bathroom at school. And I was like, Oh, he holds it all day. And then he's got to come home and go to the bathroom. And when he was falling asleep on the kitchen floor, I was like, oh, full day kindergarten is such a big transition. And there's a new baby. And there's our other son had just been diagnosed with all these neurological conditions. And we were doing all this PT and OT and speech and so I like every other parent, right? I had all these other explanations. And then we we just, you know, kind of slow down. We were on Christmas break. And we did we had this night where I was like, this is not kindergarten transition. His pants are falling off of him. He can't like finish putting his hot wheel tracks together without running to the bathroom. Our oldest daughter had made a comment, like, do you know he ate a whole box of NutriGrain bars today? And we just started talking about like, how often he was refilling his water bottle.

My husband was like, hey, you know, he started wetting the bed. I worked night shifts. My husband was like, a couple times. He's like, wet the bed in the middle. And it was a Saturday night. I was like, We cannot wait till Monday. We gotta go.

Scott Benner 7:36
When you people have sex? I don't even understand. I can't I mean, the story is fascinating. But you work the night shift. I can't figure out the rest of it. Just I'm looking here. 2014 10 762 and a half. You're on the night shift. I don't know what's going on. You guys meet in the parking lot at a Denny's on your break. What do you do? I'll just tell me real quick. Is it as he's going to work? Just I just want to know what it happens. And then we'll get past that I promise.

Unknown Speaker 8:04
So, I worked overnight shifts over three or four nights a week, which means I am home Sunday this week, but my husband also works. He works split shifts. So he's out the door at 5am He's home by 930 for a portion of the day and then he's back out the door at one o'clock in the afternoon and by 430 you just figure it out.

Scott Benner 8:27
I'm gonna get a clock and a chart and a graph and I'm gonna figure out exactly when all these children were made I mean I'm so sorry because before we started recording we start before we started recording I made you put on the headphones that now I hate you're fine I'll get rid of I'm sorry that you have to let him switch back over Are you there? Hello.

Irene 8:52
Did that work?

Scott Benner 8:53
Yeah, you're there just took us the switch back to the computer. That's all it they were great. Except as you spoke it was weird as you spoke in longer sentences. Your voice faded away. Oh, interesting. So I was like, damn, and Alright, how old are you?

Irene 9:11
I'm 40

Scott Benner 9:12
Wow, it's a lot I live in Iran. Do you feel tired? Are you tired all the time?

Irene 9:20
Sometimes I am really tired. How do

Scott Benner 9:23
you manage so my this is interesting. So your oldest obviously isn't in need constantly of thanks is probably college age, right?

Irene 9:33
Yes, she is. She's a she's in her second year of college but she actually has junior standing because she's she's a real go getter and took like every AP course she could and high school so she entered her first year of college. Actually. She was a sophomore by the end of her first semester

Scott Benner 9:55
when you drop off your baby to college that you made in college is the last thing you data, we're pleased for the love of God. Did I come on?

Irene 10:05
Um, so she spent her first year of college fortunately, virtual and her grandparents. Okay. COVID. And then yeah, when we took her in the fall, I was like, you have to remember, like, sometimes we make bad decisions when we're not really an adult. And then we have to decide how to take responsibility for those

Scott Benner 10:28
that one day we have to drive it to college. So please be careful.

Irene 10:35
Exactly. Exactly. She did not love campus life. So she spent a semester on a campus in Pennsylvania, and then was like, Yeah, I just I want to come home. i This isn't for me. So she's, she's actually back home and going to a great university that is local to us. Good.

Scott Benner 10:57
And that explains why you and I are getting along so well. Right? We grew up in the same place. Yeah, there are people listening right now that are horrified that we're making fun of your child like this. And no, they don't understand you should live here. It's all fine.

Irene 11:13
Right? It's it's always been an open conversation. I mean, like age appropriate, but it's always been an open conversation. Because how do you how do you not give your children the truth? Like, my husband is adopted, it's a closed adoption, but his parents have always been open with him about it. Like it was never this big, shocking revelation for him.

Scott Benner 11:38
Well, being serious. If you were uptight about it, I would take that as an indication that you hadn't dealt with it. Well, like that you're so loose about it. I don't take anything that you have said seriously, about, you know, in the last 10 minutes, I mean, your if you are serious about any of the things that we've said about your oldest, you're a psychopath. So I don't believe you are and I hope people understand we're joking, but nevertheless, okay, so are there any other autoimmune issues in the family?

Irene 12:08
So I have one cousin on my dad's side who has Graves disease, that's the only autoimmune one that I know of. Okay. Um, and then other than that, like, there's a lot of asthma and allergy, which isn't, like truly thought of as autoimmune but it does have the whole inflammation kind of component to it.

Scott Benner 12:38
Yeah. Okay. And then in your regular, I'm sorry, in your family proper. You said, James, younger brother has something but it's not. It's not autoimmune.

Irene 12:49
It's not autoimmune. He has something called Perry ventricular leuco. Malaysia.

Scott Benner 12:54
Why does he have that? Like the test your spelling skills? Wait, go ahead. Try it again. perio.

Unknown Speaker 13:01
Peri, Peri. Ventricular.

Scott Benner 13:05
tricular. I think this is heart related. Go ahead. No,

Irene 13:09
leukomalacia. It's brain related. It's abbreviated P V. l just Google PVL.

Scott Benner 13:17
I found it. I found it. I I didn't spell any of the words. Right. And I still can't I still found it. Wow. Characterized by death or damage of softening of white matter in the inner part of the brain. How does this how do you learn about this?

Irene 13:34
So um, so as a baby, he had developmental delays. And, you know, we just noticed that he's our he was our fifth child, we just noticed that he wasn't doing things as soon as his siblings had. And he was just kind of behind in his milestones in general. And initially, when he was really little, and we approached it with our pediatrician, and they're like, Oh, he's the fifth kid. Like, you guys are just so intuitive and calm as parents, you're anticipating his needs, his siblings are anticipating give him time, give him time. And he wasn't catching up. And we reached a point a little bit after he turned one that I self referred to early intervention to start getting him assessed. And initially, they just refer to this is like global developmental delays. But we started speech therapy, we started occupational therapy. We really weren't getting anywhere. So I kept pushing this was like, something's not right. Something's not right. We got on multiple waiting lists to have him more formally evaluated by a developmental pediatrician or neural neurologist. And unlike type one diabetes, it's not life threatening. So you sit on weightless us for months, sometimes years and we were on a waitlist with the developmental pediatrician that's associated with the hospital I work at we were on a waitlist with Children's National we were on a waitlist in Baltimore with Kennedy Krieger. We were on a waitlist with UVA, and we got off the UVA waitlist first. So we went down to UVA, and he was assessed and they actually diagnosed him with mild cerebral palsy with something called hypotonia, which is where his muscles are, like loose or weak, and he just doesn't have stamina in his muscles. And they did bloodwork and they did an MRI, and the MRI is how they diagnose the periventricular leukomalacia, they actually could see a brain injury that had been caused at some point by a lack of oxygen. And then that injury caused the periventricular leukomalacia

Scott Benner 16:05
that leads to the cerebral palsy

Irene 16:07
that leads to the cerebral palsy and leads to the hypotonia and the learning disabilities and ADHD, and all the things that come with it. Wow.

Scott Benner 16:17
Well, that's a lot, and Jesus, and that's happening as your son's being diagnosed with type one as well.

Irene 16:24
Right, so baby was born early, because I was having pregnancy complications baby was born mid September. And then with a two week old infant, I drove the hour and a half down with my infant with my, at that time, three year old child down to UVA to do this assessment. And then we were given all these diagnoses with the CPE and the hypotonia. And, and told, you know, he needs an MRI, he needs all this bloodwork, you need to see a genetics team. So we went home, we came back in November, we did a ton of bloodwork saw genetics, we went home, we went back in December to have the MRI because it had to be done under sedation with an anesthesiologist. And, and then they called us two days later to give us the results of the MRI. And it was devastating, but at the same time it open doors because prior to that our insurance company wouldn't cover any speech or OT or PT or anything. Because his diagnosis like didn't meet their inclusion criteria. So once we had this diagnosis, it opened up doors for getting him more care and support.

Scott Benner 17:48
Is it a progressive issue? Or does it

Irene 17:51
not progressive, thank God, so it won't get worse. His speech was actually with really intense speech therapy has improved. He's really He's in kindergarten this year, he's really flourished in kindergarten. And then through occupational therapy. He's uses utensils now which he like before. And I mean, like a year and a half of occupational therapy, like he couldn't eat soup. Or if you wanted ice cream, like he would literally eat it with his hands because holding a spoon was too difficult. He didn't really start dressing himself till this past summer like so how many five year olds don't dress themselves like it was those type of things and now he can get himself dressed and undressed, like potty training was really late. So he's he is flourishing, he's making tons of gains. It just takes him so much longer to get there and to do things.

Scott Benner 18:54
Wow. Oh, my gosh, okay. Um, I was looking more about it. And this just seems like it's such a random thing, right? Like the ways it can and

Irene 19:05
yeah, it's random. And nobody was looking at him for this because it most typically happens in premature babies. And he was not a premature baby. Like prematurity is one of the highest risk factors. And he was a full term 10 pound baby. Like, you know, nobody was like, oh. And it was so frustrating at the time because as I'm sure you see, like, the like you can have mild to severe and what type of interventions you need can be vague and some kids like develop a seizure order disorder. Some kids don't. Some kids have the cerebral palsy, some kids don't. And so you don't know what you're really dealing with. You just know Have to get into it and deal with it day to day and kind of see what their lives look like and what happens.

Scott Benner 20:06
Okay, wow. I appreciate you sharing that with me. Geez, I feel better. I'm making fun of your vagina earlier.

Irene 20:12
No, you're like, you know, I've had someone offer like, looks at my shopping cart at Costco. And they're like, What do you do? Like run a daycare? And I'm like, Nope, this is just for my kids. And I'm like, do you need me to buy you a television? Do you need a new hobby?

Scott Benner 20:30
I will take anything. Thank you. Would you like to babysit? I don't know you. But if you just take two of these kids and tuck them, that'd be amazing. Okay, so now how do you so we know how you saw the type one? Once you recognize that? Do you take them right to the hospital, you go to a doctor, which which did you know

Irene 20:48
it was a Saturday night. Two of our daughters were at sleepovers. You know, the youngest two boys were already in bed. So I explained to James, I was like, we have to go to the doctor tonight. I didn't tell him that I thought he had diabetes because he has no frame of reference for what diabetes is and and there was a part of me that was hoping that we were going to get there and I was going to embarrass myself and they were going to be like, Oh, silly mom like diabetes. You're such a worrywart. He's got a urinary tract infection or something. So I explained it to my husband. But I did pack up my breast pump and I packed clean underwear for James and myself. And I was like I were getting admitted, I know what's going on here. And we we left our the hospital that's closest to us, I wouldn't take my worst enemy there. So we got on the highway, we were we were just about to get on the highway when he had to stop and go to the bathroom again. So we stopped at a gas station like right before you get on the interstate and begged this lady to let us use their bathroom. And that's when I decided I worked at a hospital that is a level one trauma center that has a pediatrics program. But we passed to other hospitals on the way there and I I just was like I don't know, if he's in DKA. I don't know how bad his blood sugar's are. So we went to a smaller hospital that is affiliated with the hospital I work for and that I knew there are five hospitals in that health care system that if we went there, and I was right, he would be a priority for placement into our pediatric unit. And that they I also knew that that emergency room had board certified pediatricians. So I felt comfortable going there. So we went there, and we walked up to the like checking desk, and I just still couldn't quite bring myself to say it. And so I've looked at this like registrar, this non medical person and, and I was like yeah, my son is like urinating a lot. And I think he needs to see a doctor. And the nurse looked up. And she was like, come on back here. And I you know, she said, Well, what's going on? And I said, I think I think he has diabetes. And she was like, Well, why do you think that so I explained everything. And she grabbed one of their technicians to get an Accu check before doing anything and the meter just read Hi. And it's the one time and that like first space of time that I cried I just started to cry. And the nurse just focused in on James and got his weight and his vital signs. And then she pulled out her insulin pump and showed it to him. And she said to him guess what I have diabetes to.

Scott Benner 24:22
G voc hypo pan has no visible needle and is a premixed auto injector of glucagon for treatment of very low blood sugar in adults and kids with diabetes ages two and above. Find out more go to Jeeva glucagon.com forward slash juicebox G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk. If you're looking for community and support around your diabetes, I'd like to suggest to you that you find the Juicebox Podcast private Facebook group, which now has near Really 30,000 members in it. That's a lot of people who can offer you support guidance, or just a shoulder to, you know, not cry on, we don't cry. But some support that you might need sometimes. It's called Juicebox. Podcast, type one diabetes. It's a private group. And all you need to do is answer a few questions to get in just to prove to the algorithm, you're a real person, and then you're on your way. So matter of fact, I'm talking to people in the group right now. This is what I said to them. Does anyone live near me and want to record ads for next week? I'm tired. And while we were chatting, I said, if anybody throws their name in here, I'll give them a shout out in the next episodes, ads, so very quickly, who we got. Looks like Kelly, Elizabeth. Blue. Phil. Kristen. Dana. Brandy. Yes, you made it brandy. There was a cut off. Cheyenne asked me to shout out her daughter but then didn't tell me her daughter's name. So if you're Cheyenne daughter, and you're hearing this right now, your mom screwed up. Hold it against her all day. Who else? John and Mary Beth. Isabel didn't ask to be shouted out, but it's happening anywhere. This person says I'm here for my shout out. Call me Professor Ellie. All right, Professor Ali. You're in Monica. Billie Joe. thinks they missed the window. They'll be excited to see the here's somebody from Brisbane is at Brisbane L. Did I say it right? Anyway, you should check out jump over. It's a great group of people that really lovely, seriously, you can't go wrong. It's absolutely free to be in. And you're gonna see a ton of support there. Rebecca, Roxanne, Heather, Mike, Hannah, Scott, Danny, and Vera. Thank you for listening to the podcast, and for being a part of the group on Facebook. Links in the show notes, links at juicebox podcast.com. To the sponsors, head to the Facebook page. Let's get back to Irene.

Irene 27:09
Guess what, I have diabetes too. And I was right about your age when I was diagnosed. And she was like, Look at this cool thing. It's like having a computer in my pocket.

Unknown Speaker 27:23
And it was just

Irene 27:25
it was amazing to have someone right there who like understood and could say something to him that was so reassuring and wasn't frightening.

Scott Benner 27:38
I mean, I have to tell you I hear a lot of these stories and made me upset telling yours so I sometimes I fly right through them and I'm always surprised what's going to make me upset. This time it was the nurse having diabetes I was like that's a plot twist right out of like a like a movie. And now Now I'm upset Hold on a second. Well, I held off crying until they took the baby back I felt like I was I was really doing something back then. I I remember getting put into a little like waiting room and to call her room was generous. It was basically the closet is a closet with two chairs in it and an old magazine. And I remember crying in that that hole and then falling asleep and then being woken up in the morning. And you know Arden's like, like literally had it felt like she had tubes coming out of everywhere. And wires and everything. Yeah. Well, okay, so geez, I'm talking. I'm supposed to be better at this. I read. No, he's sorry. Oh, you're fine. Fine. Except I can't find my next question. Because I'm suddenly sitting in a hospital in Virginia, my kids two years old, and I can't break away from it for some reason. I but I guess what I want to understand is that being a nurse, and and, and the mother of a newborn child and someone who's seeing something with another child, like when you find a quiet space after that, how do you prioritize things?

Irene 29:14
So, you know, I think this speaks to, like, I have kind of that like, stoic like compartmentalize. So, you know, we get him back into the ER, they started on IV, they draw his labs, they get IV fluids going and I'm realizing now my mistake and coming to this hospital and not driving another 25 minutes down the highway because now he's gonna have to be transported. And I am not gonna let him be separated from me. So I just went into problem solving mode and I like called my husband and I was like, He's got it. He's got Diabetes there. They're starting everything there. They're calling our hospital to get him a bed and we gotta wait for his labs to figure out does he go to the pediatric ICU? Or can he go to the floor? And does he need the insulin drip and I'm like, Oh, my God, my car's here. And we can't leave our car here. But I'm not putting him in an ambulance and driving without him, he'll be terrified. So fortunately, we have family that's local. And I'm like calling that family. And a nurse that actually used to work in the pediatric ICU at my hospital pops her head and and she was like, Oh, my God, I thought it was you. And she like wraps her arms around me. And she was like, we got you. And she took over James, she basically, like kicked out the nurse that had been assigned to him. And I was like, Nope, he's my patient, like, I'm taking him. So I just went into this, like problem solving mode of thank God, she was willing to hold my keys until a family member of mine, like showed up there that night to retrieve my car so that I could go with James and the medics. To the hospital, and we didn't have to be separated. And I just was so laser focused on what do we need to do for James, how do we deal with logistics of this? How do we tell our older daughters? How do I keep feeding the baby, even though I'm physically separated, that there wasn't that moment until we were home. And we spent two nights in the hospital, and my husband and I kind of traded back and forth. And, and the moment of like realizing like, I remember the endocrinologist coming in the next morning and being like, you're a nurse. So you get this and I was like, stop. i You're right, I'm a nurse. My entire background is adult critical care, and wound care. I'm not a pediatric nurse. I am not I've never worked in an endocrinology practice. And the diabetics I see are either in the ICU in crisis, and I can, I can manage the business out of your DKA I can titrate, your insulin drip, I can correct your electrolytes and then send you to the medical floor for them to finish getting you stable and get you discharged. And I can help you when you've gotten to the point that you have wounds, or that you're recovering from an amputation because for whatever your barriers were, your agencies were high, your blood sugar's were high and you have complications. I don't know the day to day in between. And I remember saying to this endocrinologist, I want you to talk to me like I'm stupid. Because I have to do right by him. And all I can see in my head is the complications and all the adult patients I've taken care of who have been type one or type two, who haven't gotten what they needed. And now in their adulthood, they're facing all these complications. I was like, you have to talk to me like I'm stupid, because that is the weight that I feel is like, literally looking at this five year olds feet going, I have to protect his feet and looking at him and being like, Oh my Oh, my God, I have to do everything right for him so that he never winds up on dialysis. Yeah,

Scott Benner 33:46
your whole perspective is from that. That eras? Yeah. And yes. Well, that's really wonderful that you that you had the wherewithal in the moment to be like, no, no, I don't understand any of this. Just like you started step one, and let's go the part I understand. It's not fun. So no, it's not. It's not either fun parts that you can tell me about. There aren't by the way, but you know, at least basics, right. And

Irene 34:11
well, and I have to say, our hospital and our endocrinology team, like, they talk to us about Pre-Bolus thing in the hospital, and we had conversations about like, ideally, you're gonna give him his insulin. And then 15 minutes later, he'll eat. If you're having problems with knowing how much he's going to eat or how much he's not going to eat, then, you know, we're going to give him half of his insulin. We're going to wait 10 to 15 minutes, he's going to eat and then 20 minutes after he's eaten, you're going to carb account and figure out what insulin he's missing and give it to him again, to make up for the carbs that aren't covered. So I feel like we got really, in that sense, better education than a lot of other people did. Okay, and I got all the initial education. And when they were like, Okay, you guys are great to go home because he was not in DKA. I was like, oh, no, no, you're not sending us home. Tomorrow, you're going to do all this education again with my husband, because I can teach him but what if he has different questions that I didn't think to ask? And I don't know the answer. And I was like, he needs his opportunity, as like, because he is going to have to feel comfortable and safe. Because I leave it six o'clock at night, and I don't get back until eight o'clock in the morning. And I got to know that they're okay. Right.

Scott Benner 35:41
You talked earlier about how you guys split up the time in the hospital, and it's been stuck in my head since then. It's one of my least favorite things about parenting. Is that when you have multiple children, at some so hard, yeah, at some point, someone misses something. Yeah.

Irene 35:57
And, and I just, I was insistent, I was like, you can't, you can't discharge James tonight, solely because my husband has to have the same opportunity that I had, right. And we've always approached parenthood as a team, like it's not 5050. But it's, it's a team. And there's nothing that

Scott Benner 36:21
we you didn't you didn't do you didn't have to make the decision that only one of you gets the information. Like, we have some coming up in, in a number of months, where it's obviously not a health issue, but my son is going to graduate from college on the same weekend as Arden senior prom, oh, condemned his college is not near our home. Right? So we are literally trying to figure out how to like, see Arden off to the prom, and then get into a car and make a long drive. And then pull our selves together and get up in the morning and go to like Kohl's graduate. Yeah. Yeah. It's just it's, you know, there's that one moment in the middle where you're talking about at first and you go, we're not going to split up, right? Like, you're not going to stay with her for her prom. And I'm like, we can't do that. And we can't skip one of those things. And tell either of them. Hey, I'm sorry. We can't see you at your prom because Cole's graduating because that makes sense, right? Like if you had to make the decision that does make sense in my head, like graduating from college, but won't make sense to her. And know, and vice versa. So it's a difficult thing as a parent to do it.

Irene 37:31
It's like when we when we gave James we gave him an old iPhone that is not on a like cell plan. Like it's an older iPhone that we're just connecting to the Wi Fi for as Dexcom. Right. And our our second oldest daughter was like, livid. She was like he gets an iPhone before I do. I was like, he gets diabetes. Like, like she and I. And she was she was like 1112 years old. How does an 1112 year old understand like, he gets finger sticks, he gets injections, he gets all this stuff like, and it's not like he's on tick tock or something like he's carrying

Scott Benner 38:15
in a fire. In a 504 meeting once I had a teacher say, How am I supposed to explain to the other kids that she has a cell phone and they can't have one? I said tell them if they want to get diabetes, they can have a cell phone. Otherwise, they should probably shut Oh,

Irene 38:30
I literally said to her, I said well, if you would like for me to start checking your blood sugar six times a day, and where Dexcom and I'll give you saline injection. And she was like, well, that means I can have a phone. That is the most insane thing you've ever said. We're not actually going to do that.

Scott Benner 38:52
I don't even know how you would afford to buy six people a phone. I mean, there's a world like if these two kids say the first two are near dwells there's a world where one day you might be buying eight cell phones a month. You're gonna need a job just for that.

Irene 39:07
It's hand me downs it's hand me down Scott.

Scott Benner 39:11
I even just mean like the service for them. I know. Well, you might have to incorporate

Irene 39:17
my husband has this old school will never give it up this old school plan that he got when he was in college with with a cell phone carrier and we will never give this plan up. Because you can have you pay your base and then you can add up unlimited lines for $5 and one $5. Wow. That's how old this plan is.

Scott Benner 39:39
You guys still paying for minutes? No, it was it was

Irene 39:43
like when they first started rolling out like the unlimited. It's, it's insane. Like and every once in a while when we wind up having contact with the company. They're like, Oh, we should look at your plan and then they look at it and they're like, ah, nobody has this plan anymore. You should never change your And we're like, we know.

Scott Benner 40:01
We're not changing. This is the only thing. Can I tell you something? Kid? This is the only thing working out for us Have you considered having any other kids tested for antibodies for type one?

Irene 40:16
So three of ours have done TrialNet?

Scott Benner 40:18
Yes. So well, okay.

Irene 40:22
Two of the girls have done trial nap, my oldest has opted not to and she was old enough that I completely let it be her decision. But the next two girls, I bribed them with chocolate to let me do trial net, because we were able to do that at home. fingerprick. Yeah. Um, so yeah, I bribed them with multiple chocolate bars. Yeah. And then our middle son, our son who has the neurological concerns, we just did it with him this past fall, and he had a Pokeyman toy that he wanted. And we ordered the Pokeyman toy and waited till it arrived. And then like, you know, we're like, here's the toy. Here's the kid, like, we get this to build. And then we'll then you get the toy. And then our youngest is just he turns two and a half in a couple of weeks. And you have to be two and a half to do it. So we will probably do it at some point and the next year,

Scott Benner 41:42
did you get results back? Or was this very

Irene 41:44
we did. So none of our three that have tested have any antibodies? Wow. That's yeah, that's goodness. And for me, it's been a peace of mind, like when I see like, so my middle son, like recently was definitely having a growth spurt and the increase like I want something to drink, I want something to eat. I was able to be like, he didn't have antibodies. He's five years old, almost six, this is an appropriate time for a growth spurt. He's fine. It's okay. And it's, it's given me a little bit of reassurance. And I think if any of our kids did have antibodies, for me, it would have been like that opportunity to talk with our pediatrician about what's our plan for monitoring so that we catch this beat for we have to be admitted to the hospital before we have blood sugar's in the seven hundreds. And that we can avoid that.

Scott Benner 42:50
I'm going to ask you about your management style. Because if you and your husband are not in the house at the same time, so let's set up some parameters first, like Sure, kid, your kid, your kid, James has had diabetes for two and a half years. How sounds like he's using a CGM? Yes, a pump?

Irene 43:11
Yeah, he's on the Omnipod dash. So we got home from the hospital, we had that JDRF bag of hope. And I was like rifling through that backpack. And I found a leaflet for Dex calm. And I was like, what, what is this? Like? I want to know about this. Because we were definitely finger sticking more than like, in the hospitals called AC and H s before meals and at bedtime was and then that like 2am Check that we're all told to do newly diagnosed Well, we were definitely doing more than that. And I was blowing up our endo with like, I'm following what you told me I'm carb counting I'm giving correction and his blood sugars are still 250 300 This is not okay. Like we have to do something better than this. So I just called Dexcom directly that he was in. It was like the Tuesday after he was diagnosed, right? He was diagnosed like late on a Saturday. It was like Tuesday morning. I'm on the phone with Dexcom. And I'm like, This is my insurance. This is my kid. This is my Endo. Like I want this, how do I get it? And I spoke to a Dexcom representative who was like let me start researching your insurance. Let me reach out to your endo and get the scripts they were like this is not a problem. We'll get this figured out whether it's going to be DME or pharmacy. I hung up the phone with them called my insurance company and I was like you better approve this.

Scott Benner 44:49
calls you I don't have your arguments. Yeah.

Irene 44:52
I was like, you know, what's the criteria? Do I need a prior approval? Because I'm gonna hang up the phone with you And then I'm gonna call my endo and our insurance was like, Yeah, not a problem. It's under your pharmacy benefit. They were like, you know, typically you need to have had hypoglycemic events. And I was like, He's five, he doesn't even know. He can't tell he's unaware. So I was able to then call my endo and and be like, You need to tell my insurance company that my child is hypoglycemic unaware. And they were like, Yeah, well, most five year olds are and I was like, great. So I need I need that script.

Scott Benner 45:31
Did they hear you winking through the phone? Do you think?

Unknown Speaker 45:33
Yeah, pretty much.

Irene 45:36
And we picked up our Dexcom at the

Scott Benner 45:38
CVS two days later, wow, you made that, that's for sure. And I

Irene 45:43
just got on YouTube. And I found a ton of videos of people putting them on. And I showed a couple of videos, my husband and I sought out videos specifically that were young children putting on a Dexcom. And so we showed James a couple of videos, and we were like, alright, buddy, let's do it. And we put a Dexcom on. And the very next day, we had our first appointment with one of the CDs at the endos office. And we went in and she started like talking about all the foods that we should avoid. And I was like, Nope, we're not doing that. And I was like, I want to talk about a pump. And she was like, oh, no, no, no, you can't have a pump until he's been diagnosed for a year. And I was like, I'm gonna stop you right there. I'm an ICU nurse. I'm familiar. I was like I can fingerstick all day long. I know how to give injections. I understand sliding scale. I understand correction. I was like, I also understand the importance of tight glycemic control to prevent complications. I was like, I'm very familiar with insulin drip. She was like, well, insulin drips or regular insulin. And he's on Lantus and human log. And I was like, it's still the principle of the matter that with a pump, I can have better control. We can turn things off, turn things on, we can make adjustments as needed. I was like, I'm gonna get that pump. And she was like, well, let's talk about this thing. And she pulled out a Dexcom. And I was like, yeah, it's on his butt already.

Scott Benner 47:13
We got that lady.

Irene 47:15
Like, we've had it for 48 hours. Here's the receiver, as like, we're done with that we're moving on. And she just was like, well, that your doctor will never sign off on the pump. And I was like, Okay, we'll see about that. So we left that appointment.

had an appointment A week later, with a nutritionist, we went over carb counting again. And, and again, I looked at the nutritionist, and I was like, How do I get the pump. She was like, Oh, we don't usually do that for about a year. And then you have to go to this class. And then you have to meet with the trainers. And you have to do a sailing trial. It was this whole, like, lengthy, lengthy process. And I was like this, there's got to be a way around this, there has to be a way around this. And we met with our Endo, We made adjustments, we're getting better control. And then we met a different CDE. We were maybe like a month out, we met a different CDE and our endo group, who is a type one herself. And I was like I want him on a pump. What do I have to do to get them on a pump and she was like, I don't, I don't think there's any reason not to get them on a pump. She was like, you understand how to carb count, you understand how to finger stick, he's already on this. You know, on the decks calm. She was like, we just need to get you to the pump training class. And she's like, it's held once a month. And unfortunately, February's pump training class was actually yesterday and she was like, but we'll get you into the march pump training class. And at that point, I was actually already listening to the podcast and had met a mom at our elementary school who also had a type one daughter who was on the Omni pod and the Dexcom also and I had researched I wanted nothing to do with Medtronic. If we went with Medtronic, there would be a push to use their CGM and we were using the Dexcom already and comfortable with it. So I was like, Well, why would we change and then I was comparing the T slim and the Omni pod and I was like, the shortest tubing for this T Slim is 24 inches. And this kid is only 36 inches tall. I was like what do you do with 24 inches of tubing kid that's 36 inches tall like I was like we're gonna have to like wrap him in it. So I just that like really made me lean towards Omni pod. So beginning of March we went to pump train thing. And we had we had him with us and we had him like look at the T slim and look at the Omni pod. And he held the T slim in his hand and he was like, this is really heavy. And he was like, I don't like this. And he he was interested in Omnipod also. And fortunately, I had learned from this mom who was at our elementary school using the same endo that we use that we needed to go back to our endo and say, We want to train directly with the Omni pod wrap. And that the process would move a lot faster. Because the process through our like Windows Office and through our hospital would take us a month to two months to do.

Scott Benner 50:55
Oh, but um, but the the Omni pod rep might have a shorter schedule.

Irene 50:59
Yeah. Much longer schedules. So the again like the very next day, I was like, okay, my husband and myself and my child were all in agreement that it's Omni pod. I went to Omni pods website, I filled out their like intake form. We had met the rap I she'd given me her cell phone number I like texter and I was like Mona we're, we're settled. We want the Omni pod like, I filled everything out on your website, can you please help us expedite as quickly as possible? We called our Endo, we were like we're sold, this is what we want. We want to go with the rap. And we want to skip the saline trial, we want to go right to insulin. And again, it was that CD II that was a type one herself. That was like not a problem. She was like I think you guys are a great candidate to go straight to insulin. Like we'll get all the orders put in today.

Scott Benner 51:56
Do you think they thought that because you're a nurse? Or because of how assertive you were? And because

Irene 52:01
I'm a pain in the ass?

Scott Benner 52:03
No, hold on. Do you think she even believed that? Or did she just want to get rid of you? She's like, you know what? Yeah, sure, go ahead.

Irene 52:10
So I think it was a little bit of both, I think it was you are a parent who is knowledgeable, who's done her research, who's diligent for her child. And so we feel comfortable? And did some of that maybe come out of being a nurse. Yeah, maybe a little bit. But it's some of it that I'm just a

Scott Benner 52:35
person

Irene 52:36
a like, persistent. You know, when I know what I want, it's what I want. And I go after it.

Scott Benner 52:42
It's been clear through this whole story that you just made everything happen that you want it to happen. Like, you know, yeah,

Irene 52:50
I mean, I just, it's, it's funny, because I can't do it for myself, but I can do it for my kids. Like, if it's me personally, like, I'll back down, I'll be like, Oh, I don't want to bother that person. Really, when it comes to my kids, like, whether it's, you know, getting them accommodations for their IEP s or their five oh fours or getting them the medical care they need or, you know, any of those pieces, like do not get in my way.

Scott Benner 53:21
Well, you remind me of me, because, you know, we just recently had to switch back to edge park for Dexcom supplies. And, you know, they, they they act like recall, it's all set up, it's going to happen automatically, except in the year ends and they act like you've never bought these things before from them. And then all of a sudden, you're looking in the drawer and the piles going down and down, down. I call them up and I'm like, What's going on, you know, where the where the Dexcom supplies? Oh, well, we need prior authorization from the doctor. And I said, Excuse me. I apologize. I said, I said you know your shirt, great. She's been using it for like, you know, a decade or more. But let's act like it's never happened like, well, this is insurance for the year. We'll take care of it. I go, okay. And then seven days later, I call back and I go where are the Dexcom supplies? And then i The person said the same thing to me. And I went oh, no, no, no, no, stop. I was like, No, that's the same. Like you're literally speaking the same words that the last person said to me seven days ago. Yeah, you're never going to handle this. I'll take care of it. So I'm sorry, I'm dying. Give me a second. This is the end. One day I'm going to be right. What am I gonna say? And then you're just gonna hear like a loud thump on a table and people are gonna be like, Oh, she was right. It was the end.

Unknown Speaker 54:47
So fine art and on Instagram, let her know or dad's

Scott Benner 54:51
call 911. Sweetie, and by the way, don't look for art on Instagram. She doesn't like it when you do. No, no, no. She really, here's what happens. She goes Is this one of your people requesting my account?

Irene 55:05
I have I having teenage daughters, who also like I love sarcasm and have a sense of sarcasm. I can just imagine our being like, could you make these people leave me alone? Like, I don't get it?

Scott Benner 55:22
Why is this? Why are they bothering me? Did you hear her on the show? Last

Irene 55:26
year? I did. I did. I just laughed. I just I appreciated so much how there's this piece of her that is like, like, I don't know what the hell that is dad, like, that's your problem. Like, I don't need to know these things. Because because you take care of it for me. And my, like, my oldest daughter is cuz she's going to school locally and living at home has actually taken a job at the hospital I work at. And it's funny, because she'll be like, Yeah, you know, like, I met this person and, and she's like, they like really like you. And she's like, looking at me. Like, it's

Unknown Speaker 56:12
so weird that people like you.

Irene 56:17
Because my job my job now for the past several years is I'm not in ICUs anymore. i My job title is administrative director. It's like being for lack of a better way to describe it. It's like being the charge nurse for the whole hospital. And so it's a it's a visible position. It's 1000 bed hospital. And if somebody whatever the problem is a supply issue, a staffing issue, patient that has a concern. It's mine too deal with I go to all of the like emergencies, like a patient's having a change in status. Somebody has a respiratory or cardiac arrest like so it's a very visible session and so many

Scott Benner 57:05
people know you as fascinated by that. Because, yeah, you're just a child who had they got pregnant in college to her?

Unknown Speaker 57:16
Like, done a pretty decent job pulling your life?

Scott Benner 57:18
Yeah, no, no, by the way. I feel like that goes without saying, right. But no, I you know, please, it doesn't matter here like this, this podcast is listened to a little far and wide. And I go downstairs and say something and they look at me like I've never had a good idea in my entire life. And there's no reason why you would listen to me. And I'm not saying I'm right all the time. I like but you do sit there and you think, you know, a great many people at least pause and listen when I'm talking like they might not like they might not you might not listen to podcasts. They go wow, everything Scott just said was amazing. I'm gonna go put it into action. Like that. I understand. But like, I'm literally sometimes treated like a person who's broken into the house. Who's that? Why is he talking? Oh, my God. But by my point was gonna be is that i It's funny, we I coughed and we changed directions. But um, I basically told edgepark I'm like, I will do this. And it's it sucks. But I just went and did their job. I contacted the doctor's office, I contact the nurse practitioner, I made it clear what was going on. I made it clear what they needed to do next. Then I started following up with people like I'm the assistant to like, the most important person in the world. You know, I'm like, you know, Dr. diabetes says you need to do this. Did you do it? Do it now. You know, the next day back on the phone again? Is it done? And you'd be surprised how quickly it gets done when you're assertive like that. And I

Irene 58:52
wasn't I am not surprised. I completely because we we went to a pump class the first week of March 2020. Right. And we were scheduled to do our Omni pod training like, we were meeting the Omni pod rapid. I don't remember it was like a Starbucks or something. Like about three weeks later after class, and it was gonna be on a Monday, right? Well, the Friday before our training, the world shut down for COVID and we got this email that like the kids were gonna stay home from school for two weeks. Yada yada yada. My husband works for the school system. And you know, he got a notification not to report to work on Monday morning. And the first thing I did was call our pump trainer and be like, how does this impact our pump training on Monday?

Scott Benner 59:49
I don't care what's happening in the world. We're doing this pump training.

Irene 59:53
We have the pump train. She's like, I can't meet with you in person like I've I've got to go back to him. My leadership and figure out what we were doing. And I was like, Okay, I need you to call me Monday morning, obviously, I'll be home. Again, like, she was great. And she was like, we're trying to figure out, like, how to do it. And I was like, I have everything in hand. Like, I gotta tell you, if this takes too long, I'm just gonna read the manual, watch YouTube videos and do it on my own. And she was like, no, no, no, no, hold on, hold on. And she did get back with us. And we, we actually were Omni pots pilot for virtual training. And so we got on this virtual platform, not zoom. They were I don't remember. But they were using something else. And it was so funny, because you could see like other people who were watching this. And I had I gotten impatient. So by the time we got on it, I was like, Yeah, I've got the thing programmed, can you just like, look at it and make sure I programmed it correct.

Scott Benner 1:00:56
They're all like, kind of she figures this out with YouTube or a lot of a job. You know, I really want to tell you, I appreciate the way you are. I don't know if that's gonna make sense or not. But like, you're so your conversation with me today. Exactly mimics the way you post on the Facebook board. And so like you are that person, like you're not there's no error about you, like you're not pretending. And even what I mean about that is like your poster would appear to be to some people all over the place, I think of them as like, well balanced. Like some people pick a lane and stick to it, they yell about one certain thing, or they care about one certain thing, or they you have a you're involved in like a myriad of conversations that, that if if you What do I mean, if someone looked at just one of your posts, they could make it they could they could look and go, oh, this person is leaning in this direction with their ideas or that direction. But you're not you're very like, like, like, centered, but in a very good way. Like you're not. I don't know, like sometimes people say centrist with their ideas. And they think of it as poor, like, like, you don't have a real opinion one way or the other. But you're not like that you're everywhere

Unknown Speaker 1:02:13
I view it as you you have to look at the individual.

Irene 1:02:20
Right, there's, like, there's multiple ways to address things. end, you have to look at the individual and what is right for that individual. You know, and what meets their need.

Scott Benner 1:02:36
Yeah, so like a common sense person to me.

Irene 1:02:39
Yes, I think that's a good way to put it. Like, I just, you know, if someone else is really happy with, you know, low carb and, and MDI, and it's working for you, and you're having good outcomes, keep going, keep going. And I just might like, and support people where they're at, right? Because if you don't come in where they're at, they can't move forward. Like,

Scott Benner 1:03:17
you can't talk down to people or talk or be talking to them either. You have to You really do. It's such an it's I hate cliches, but you know, finding somebody's launch point. And beginning there with them. It's just, it's a big deal. Exactly. And I'm even talking about like, like just conversationally even, like, you'll, you know, there's a post here from you that I remember, like I looked, you know, I went through your thread, like this morning, like, oh, all of them like everything. I just kind of ripped her away. And it's just like, you go from like, complimenting a low carb person on a meal they put together which I don't think you keep low carb, right?

Irene 1:04:00
We don't I mean, we occasionally, I gotta be honest, we're not low carb. We're just not but like, in James's favorite breakfast is hot chocolate, and instant oatmeal. I mean, that oatmeal is 44 carbs and as hot chocolate as another 15 carbs. And I plug that in this PDM and it calculates, and then because I know it's what he needs, I throw another full unit of insulin on it and I put it on an extended Bolus. I've got other times where I look at a meal. And it's somebody has shared a low carb meal and I'm like, Hey, that looks good. I think I want to eat that. Yeah, I might make that.

Scott Benner 1:04:44
That's that to me. That's great. Like just, you know, that you just whatever seems to make sense at the moment as down to like, there's a post on here from you where you're just like, hey, does anybody think like episode 514 should be an after dark and then and you're just like joking around? Like, so you're, you're just a very, I don't know, I really don't know how to put it other than to say, you feel very common sense to me. And I think that that's what's helping you through, you know, all the things that you're seeing with your with some of your kids and and, you know in your schedule and your life like it all seems well, unless you're out of your mind and you're hiding it for this, would you talk to that now if you were just like Scott, I'm I'm probably Adderall right now. And I'm barely holding it together.

Irene 1:05:30
I probably am a little out of my mind. But no, I mean, I, you know, it's not that I don't look at the future. It's not that my husband and I don't have forward thinking. But we also are very much alike. take things as they are, and like, what does what does this moment need? What does this situation need? And we have other times where, you know, like, we tried a new spot for James's pot last night, we changed his pot. And he's, he's a lean, like, he's a lean little guy. There's no Pudge on him. We put his my husband put his pod on his thigh, and I I don't love this site. We had a lot of lows last night. I think it's actually that cannula might actually be like, pretty close to the muscle. And he's, it's like he's absorbing that insulin very quickly. And so we were up multiple times last night, and we Temp Basal back some and we were still having low. So he gets up this morning. He's just he's so tired. And he so cranky, and he doesn't want to go to school. He wants to go back to bed. And I'm like, Man, I don't want to every time be like, Oh, that's fine. Don't worry about it. Like where's the middle ground on this because I don't. I can see enough into the future. Like a teenage boy, if I'm always caving in elementary school and middle school in high school is going to be like, Oops, didn't write my paper. I better tell mom, I had a rough night so I can stay home. So he was low this morning. You know, he ate his breakfast. And then he had another 32 uncovered carbs. And I was still having a little trouble getting him back up. But I was like, Alright, go back to bed and we'll reassess at 10 o'clock. And James, we got his blood sugar back up, he slept for a little bit. And then he came downstairs a little bit after 10 o'clock. And he was like, It's 1015 I think I need to go to school. Like that's the middle ground, right? Like, let him get the extra hour of sleep because he had a crappy rough night. And we woke up multiple times. Temp Basal him down 10% for the next five hours for the school day, because the site seems to be like super absorbing. And we'll figure out later tonight, whether we're going to just keep going at Temp Basal down while this pods on or whether we're going to move it to our typical like back of the arm or upper buttocks. Like

Scott Benner 1:08:14
I've done exactly what you're talking about. There are times when I've said to art and like, I don't care get up and go, like, you know, and there are times where I'm like, You know what, this is reasonable. You know, she, she's, you know, we got out of bed this morning. And I don't know, you found out that her blood sugar was higher than we wanted it to be. And I'm going to give her a bunch of insulin. She could sit here for a half an hour while I make sure that a that this wasn't too much insulin, and B where I make sure it's working because I don't want to be I don't want to be in the situation where an hour and a half or an hour I'm texting or saying like, Hey, we're gonna make another large Bolus, not knowing if the Bolus is right. It's not near food, like, like there's some things that are just common sense. And I and at some point, so you kind of treat them like people who need some, some comfort to without without making them into somebody who goes, Oh, I stubbed my toe. I can't do anything.

Irene 1:09:06
Yeah, and you know, and I think that's the trick, right? I, you know, I listen to some of the adults you talk to who it is interesting. There are so many of them who I hear like, yeah, my parents kind of said like, you better figure this out. This is yours to do, but they're also very protective of their parents and they don't want to say that. Like they didn't have support from their parents. And I listen to parents now who are talking about, you know, how much their kids are doing independently. I'm, I want us to in a lot of ways follow James's lead. But I don't want to baby him so much that like we get too. He wants to go to college like on the West Coast and you don't know how to do that, or Yeah, we don't know how to do that

Scott Benner 1:10:08
shooting for you just always kind of shooting for the middle.

Irene 1:10:11
Yeah, exactly. So like he, this summer, he wants to go to camp, we did a family camp last summer. That was just a weekend. He loved it. He wants to go back to camp. But he wants to do the full week with the other kids with out his parents. So we had great conversation with the camp coordinators about like, what does he really need to be able to do independently to go to camp for seven days without a parent? And what can you guys realistically do for him? Yeah, he doesn't, he doesn't do his pod changes. He doesn't change his Dexcom. Like, he has put the insulin in his pot a few times, he has pushed the buttons on the, you know, touchscreen of his PDM a few times. He usually picks his sight, but he doesn't do it independently. And if I say to him, like he can finger stick himself, but he doesn't want to. So if I say to him, like, Hey, James, can you do your finger stick? He's like, Oh, it's so much work.

Scott Benner 1:11:16
Well, listen, last night last night. But I mean, my kids almost 18. And last night, I came into the same room with her. And I said I forgot what happened. She had I do forget what happened. Oh, she just got home from her Disney trip from school. And we're still in the we're still getting her settings adjusted back because they were significantly different for walking around in the heat at Disney. Oh, I'm sure. And so we had this, you know, we adjust it back a little bit. And you know, it was going okay, but there were, there's more to do. And I said to her, I'm like, I just want to do a finger stick here. Because, you know, I want to make sure that the next thing I do was is 100%. You know, right? Because I think I'm right here. And you know, I want to just I want to be done with this. So anyway, I I'm sitting closer to her bag than she is. And I pulled out the meter, the Contour. Next One, which is available at contour next one.com forward slash juicebox. And I pull out the test strip and I stuck the test strip in it. And I handed her the lance and the meter. And there was like I reached my handout with it. And she looked at me. And we were just both staring at each other thinking the same thing. Like you're doing this not me, like get like she's looking at me like, I mean, she was had her laptop open, she was watching something. And I know she wanted to just like stick her hand out and get her blood sugar

Irene 1:12:36
tested, and probably stick out her middle finger for you.

Scott Benner 1:12:39
I just I pushed the meter into her hand. And I was like, I don't know what you think is happening here. But I'm not doing this, you know, she, you know, there's no problem. She tests her blood sugar. But there was that moment where both of us were like, you're doing this not me, you know, she had the same feeling. It's just it's tiresome doing stuff like that over and over and

Irene 1:13:00
over. And it's, you know, I've had times where I say to him like, Okay, this is your carb cow. Like, you need to Bolus yourself for dinner. And he kind of gives me the groan and I'm like, like, you gotta do it a few times to prove you can do it at camp, right. And I'm like, because I'm like, if you don't want to go, that's fine. Just tell me you don't want to go. But if you want to go, we need you to be able to, like Bolus yourself for your meals and pull out your Dexcom and look at it and see what your blood sugar is. And when you're low look at somebody at camp and be like, Hey, I'm low, like I need juice or whatever. The truth

Scott Benner 1:13:41
is, it's gonna take those examples. And he's gonna have to do them. I mean that that's how you figure it out. Like I mean, listen, Arden was in Disney. Thursday, Friday, Saturday, Sunday, she flew home Monday night. They did provide a nurse who was you know, on her Dexcom and watching her I would say probably three times the nurse like you know, she usually overnight where Arden would I have to admit one time she dipped down to like 66 I wouldn't have done anything about it. But I understand the nurse did like I could tell it was coming back and and it wasn't gonna get lower. And Arden's. The nurse told me later even when she woke garden up and she's like garden art and it's the nurse and art and picked up her phone looked at her blood sugar and went Why are you bothering me? I'm okay. She's like no, you're 66 and are just like this is going to be fine. And she said just as she was getting ready to described or look do you see how the lines bending in the other direction? She thought why don't I just drink some of this juice real quick and like make this lady happy and like be done with it you know? Meanwhile the nurse was like she was terrific. But that five days was a great like it made me feel good about like okay, like she'll be able to go to college. Right and then we have a we have a situation coming up soon. Where Kelly and I I have to be away for a number of days and Arden's like, I'm going to stay by myself at the house. And like everything inside of us like, no, that's not a good idea. But what I really know is that this is a perfect time to try it, because at least she'll be in our house. And, you know, we have neighbors, and we can set sort a little like, we can set up some safety things she won't even know about, you know what I mean? And let her try to get through it, it's a good practice run, because she is gonna go to college, you know, right,

Irene 1:15:30
we would love to James still goes to the nurse's office. And we would love to progress to that, like texting with him. And he doesn't go to the nurse's office as much, but he's just not ready yet. But I am hoping that the experience of Camp lake in a, in a really supportive environment that he wants to be in, like, kind of helps him make a little step towards a perfect, it's perfect. And if it doesn't, I mean, if camp is a flop and

Scott Benner 1:16:04
the next leg up, then the next thing will help. But I mean something, you just have to keep doing those little things. I mean, back, it listen, Arden's either go into, you know, I don't know too much, or a person, like Arden applied to a number of colleges, and then got into all of them. And so she's got her choice at the moment. And, you know, as she whittles it down, it becomes clear, she's either going to go into the city, or down to Georgia. And, you know, there's part of me that's like, well, the city is only an hour away, like, that's good. You know, because if something really went wrong, I could get there an hour. But then I thought like if something went that wrong, five minutes is too long, like forget an hour, right? So what's the difference? If she's in New York? Or she's Georgia?

Irene 1:16:49
Well, no. And I mean, how many kids go to a school, spend a semester, spend a year and they're like, this isn't the thing for me. And, and then they, like, either come home and regroup. Or they know what they, you know, where they want to go, and they apply to transfer somewhere. I mean, it's, it's not set in stone that like any of our kids will be in that one spot for those four years, yes,

Scott Benner 1:17:20
a lot of things are gonna happen. So you have to take advantage of the opportunities to practice. That's pretty much it, right? It's doing the same thing, and figuring it out how to how to handle it, and you're going to have these kids, anybody who's listening to kids not gonna live with you forever. So hopefully, yeah, to take advantage of those situations, you know, I mean, I'm having too good of a time talking to you. So if I don't just say goodbye, we're not going to stop. So we're done. Okay, it's over. Is there anything that you wanted to say that I didn't bring up?

Irene 1:17:52
Yeah, it's funny, because I initially reached out about the nurse thing, like you've mentioned multiple times, that nurses seem to have a harder time. And, and I think you're right, and I, I, I think nurses have to remember to, you know, as they're advocating for their child, right, they have to advocate for themselves, because we go to nursing school, and we learn a little bit about a ton of different things, but we don't hone in on any particular thing. And then as we start our careers, we do tend to specialize like labor and delivery, critical care. And we don't have a ton of exposure to type one, we, we most of us probably see a few type ones, but not tons of them. And then the other thing we have to remember is that the diabetics that we do come in contact with, especially if we work in the hospital, right? Are not, they're not representative of everyone. And we have to learn how to kind of separate those fears, like not everyone that I saw in a wound care center represented the overwhelming majority of adult diabetics, right. And then I think we struggled to because the way we see things managed in the hospital is not what day to day home management looks like. And because we have familiarity with hospital based management, sometimes home management is uncomfortable. And it's very different. And then you have to learn how to compartmentalize, right? I can't take the style of management that I use with my son, and then use it with patients in the hospital, but I can take understanding the importance of a CGM or an insulin pump or carb counting an advocate for my patients in the hospital. This is really cosmetic I'm a huge advocate and my own hospital. We now put CGM on newly diagnosed patients before they leave the hospital. Wow, good for you. And we have, we always had a way for patients to keep their pumps. But we didn't necessarily advertise it. And so now we're doing a better job of saying, if we want someone to take their pump off of explaining why we want not just because we're not comfortable with it, but what's going on in this situation, that we're asking you to come off your pump, or coming in, and asking them to be more proactive to say, like, you're here, because you were in a motor vehicle accident, we're a trauma center, and you have a fracture, and we need to place that bone, we see you're on a pump did you want to stay on your pump. And it is hard. And it's because there's an assumption that you're just, you're just going to know what to do and you don't and then you feel paralyzed by it. And you have to separate what hospital management looks like and hospital complications with what your life with T one D being the parent or being the individual yourself is going to look like,

Scott Benner 1:21:20
right? That's great. And you're you put that effort in at your own institution, and you'd have much trouble getting those changes made.

Irene 1:21:27
I think I was at an advantage in the position that I held that I have, like direct regular contact with executive leadership. And I was able to come back and say to them, like, I would just really love the opportunity to sit down and share my experience as a newly diagnosed parent with you. And what I think we could do differently. And it didn't happen overnight. You know, but it was information sharing. And, and being able to talk with other families, and then the leadership of our pediatric department being able to go back to our endocrinologist group and say, hey, you know, how do we look at this? And some of it became like, education with like, I got called one night that there was a T one D patient who was adamant about keeping their pump and the trauma resident was like, Oh, no way, are we doing that. And I was able to come up and like sit down with that resident and say, This is why your patient wants to keep their pump. This is why trying to push them off of their pump is not a good idea. And let me give you some personal perspective. In this situation. Yeah. And look like they have, they also have this Dexcom. And so you're going to be you're actually going to have more information, you're going to be able to walk in at any point, and be like, Hey, what's your blood sugar look like? And they're going to be able to answer that question for you.

Scott Benner 1:23:11
Yeah, I thought a lot of your stories today revolved around not just doing things the way they're always done, because they're always done that way. Like, like, seriously, there's it's a main theme running through how you how you impacted all of this. And it's just, it just shows the I mean, I guess the I don't want to call it pushback, but the answers you got back from a number of different people along the way, just were very reflective of well, this is how it's done. I don't ask any questions. This is just what we do. You know, and it's so important to, to follow common sense and to sometimes have to show it to other people.

Irene 1:23:51
And if you can give a logical explanation, right, like, why you know, like in the hospital, if I can explain to the bedside nurse or to the resident, or to a director of a unit, why it's actually in their best interest to let this patient keep their CGM and keep their pomp, right. Like, why is it an advantage for you? It's better care for them. Oh, and because healthcare is a business, whether we like it or not in America, health care as a business, why you're gonna have more satisfied customer being part of it, too, then you can start to win people

Scott Benner 1:24:35
over. Yeah, well, there's a lot of good reasons to do it. And I've also

Irene 1:24:38
had a situation where I've gone to an emergency call and walked in a room and the patient is completely unresponsive. And we're not quite sure why they're responsive. And I have physically taken their pump off of them. Like this patient can no longer manage their pump. We don't know what's going on. The pump is going away.

Scott Benner 1:24:57
You have to start over again at that point. Yeah, yeah. Oh that's a completely different situation but yeah, that makes sense as well. All right. That's it alright Irene listen, I would tell you that you you are very common sense the person I like it a lot. I would say something like if you ever you know need a new husband and both of us are in the in the bump look me up but I gotta be honest with you I'm not raising your 75 kids so it doesn't matter. You're on your own okay. But I love talking to you. I really did.

Irene 1:25:25
Thank you. Thank you. Appreciate it. Oh, it was great.

Scott Benner 1:25:34
A huge thank you to one of today's sponsors. Je voc glucagon. Find out more about Chivo Capo pen at G voc glucagon.com. Ford slash juice box. You spell that? G VOKEGLUC AG o n.com. Forward slash juice box. And don't forget to find touched by type one at touched by type one.org and on Facebook and Instagram. Last but not least, the private Facebook group Juicebox Podcast type one diabetes. It's worth your time.

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

#763 Bold Beginnings: Community

Scott Benner 9/28/22 Scott Benner 9/28/22

#762 Artic Driver

Saxon is a UK based truck driver with type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to Episode 762, an episode that was almost called BJ in the bear, who remembers Greg Gaffigan. And that charming chimpanzee

Saxon is an adult living with type one diabetes, and he's a truck driver, which I find compelling. It's a crazy job with a lot of demand. And I thought it'd be interesting to hear about a type one who does such a thing. Hopefully you'll think the same thing. While you're listening to Saxon and I speak. If we should say something about you know, like medical stuff. Try remembering 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. We're becoming bold with insulin is everybody holding their arm up next to them right now and pretending to pull down on the air horn. Remember that when we were kids, the people do that anymore. And I don't have an air horn sound effect. While you're listening today, please consider going to T one D exchange.org. Forward slash juicebox only do this if you're a US resident who has type one diabetes, where is the caregiver of someone with type one. But if you are those things, and you go to that link, all you have to do is fill out the survey and complete it. And you've supported me, yourself and other people living with type one diabetes, T one D exchange.org. Forward slash Juicebox.

Podcast 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. today's podcast is also sponsored by Ian pen from Medtronic diabetes, not interested in insulin pump, but you'd like some of the functionality that they offer. You are looking for the in pen, check it out at in pen today.com Do not forget to check out touched by type one.org great organization helping people with type one diabetes, they're doing more than I can tell you to be perfectly honest, it's just they have a lot of what they call irons in the fire. They're doing a lot of great things for people with type one, all they want is for you to know about it. So head over to touched by type one.org and see what they're doing. You can also find them on Instagram and Facebook. These are other places that you could follow touch by type on it. Go ahead and do it. What are you busy, you don't have time, the phones in your hand right now don't act like it isn't touched by type one.org Get going?

Saxon 2:42
When I'm Saxon. And I suppose I applied to get on here when I saw a post on your Facebook group asking if anybody has any crazy jobs or hobbies. And I thought well, I don't know if it's crazy or not. But people seem to think that truck drivings a bit much for them. So

Scott Benner 3:06
you threw yourself?

Saxon 3:08
I suppose so. Yeah.

Scott Benner 3:10
I appreciate it very much. Thank you least I didn't know, you know, imagine if you're taxidermy and field mice or something like that. And you have an army of them. You know, I have a hobby. I have an army of taxidermied field mice and one day and Okay, thank you. I probably would have said yes to that too. But I found truck driving really interesting. As I don't I don't know how anyone does it. I mean, you know, I'm saying like it feels to me, like, Okay, I could, I could go for a ride for an hour, two hours, maybe three and then I'm gonna need to stop walk around, I'm gonna get tired. There's that road noise that kind of lulls you into a coma. And trucks are just everywhere. I mean, I I imagine people know that. Trains, trucks, ships, that's really how we move things around the world. You know, I guess it could feel like you just order something from Amazon and it shows up at your house and a van. But

Saxon 4:11
it's I mean, that stuff doesn't just appear on the shelf. It doesn't

Scott Benner 4:15
just appear there, right? You've like this, this job that basically keeps everything going and seems difficult to me, but I'm gonna find out about it when they ask you some questions. So before we do that, how old were you when you were diagnosed with type one?

Saxon 4:31
So I was just a few months before turning 31

Scott Benner 4:35
Oh, no kidding. How am I now?

Saxon 4:39
Or next week? I'll be 34 Oh, this

Scott Benner 4:41
is pretty recent for you, though. fairly recent. Yeah. Hey, you've been driving your adult life.

Saxon 4:49
11 years now as a truck driver.

Scott Benner 4:51
Okay. Okay. So you were entrenched in your job when when this happened?

Saxon 4:56
Well, yeah, sure. And a few years back I Well, when I first started looking on some forums about training, I was saying even then, so 11 years ago, I would have just lost my right to drive trucks altogether for being on insulin.

Scott Benner 5:14
So 11 years ago, when you were thinking about getting this job, that was a, when did it stop being?

Saxon 5:21
I'm not quite sure when it actually stopped. But it was certainly a concern when I when I got diagnosed. And it was a couple of weeks time and two or three more weeks after diagnosis, when finally I saw one of the specialist doctors we have here and it says no, you can still drive until we tell you that you can't it, you know, it's okay. Now you can live a normal life, so long as you look after yourself. Oh, that's

Scott Benner 5:46
so that's interesting. So after you're diagnosed, you're only remembrance of this rule is from when you first got the job, probably six years prior? And were you concerned that you were going to lose your job as well as get diabetes?

Saxon 6:00
Well, yeah, of course. And I thought, well, this is the only way I really know how to earn an amount that I'm self sufficient on. I'd have to completely retrain, what the hell do I do? I've got a mortgage to cover and all that, you know, it's, it's a little stressful. And in the meantime, I've also been told that same time, they said, I can still do it, that I also then couldn't do it for at least a month until I could show stable sugar readings.

Scott Benner 6:28
Well, that's a motivator, I guess.

Saxon 6:31
Yeah. Well, it gave me time to learn. But it's a bit ridiculous in that you can still drive a car, you can drive a van or whatever, up to three and a half tons. But anything bigger than that you're not allowed to drive until the doctor says that you're stable enough.

Scott Benner 6:49
Do you drive a tandem truck?

Saxon 6:52
Oh, you mean with a

Scott Benner 6:54
trailer? The trailer? Yeah.

Saxon 6:55
Yes, yes. We call them Artix. Here, I think you call them a semi don't you over there.

Scott Benner 7:00
Semi tandem yet? What did you What do you call it? Arctic? A RT?

Saxon 7:06
C? Yeah, because it's articulated, or whatever.

Scott Benner 7:11
Gotcha. I was trying to find the connection to the cold. And I was like, I don't see it. But that makes sense. So over the road, local, how far of distance do you drive in the course of a day?

Saxon 7:29
Ah, I mean, the job that I have now is largely going into central London and back certainly, with a tower crane company. So yeah, it was a lot into London. It's about two and a half hours away from where we're based. Okay. But then the other day. Well, I had a whole weekend driving up to, like, halfway up Scotland and back. So that was probably a 500 mile round trip. Okay. I across the course of three days.

Scott Benner 8:03
And you sleep in the truck?

Saxon 8:05
Yeah, yeah. Lucky me.

Scott Benner 8:08
We, when my son was very young, there was a gentleman that coached his like local sports team. And he was in a what we would call an over the road drivers. He was gone for days at a time. And he would drive up and back from New York to Florida, over and over again.

Saxon 8:27
And yeah, that sounds like a long way.

Scott Benner 8:29
Yeah, it's terrible. I can tell it took a toll on him. Is there? I'm gonna ask you such a crazy Well, is there a lot of drug use in in truck driving? Like, how do people stay awake that long?

Saxon 8:42
Ah, I honestly, I don't know. I mean, where I work. Now we have drugs testing anyway. So it's not too much prom. For us. There probably was a lot before. But we have a lot of regulations. And we've got devices that record all our movements, to try and restrict us getting overworked and therefore not getting so tired. Okay? Although you talk to some of the older drivers and those because it used to be like a wax disk in attacker graph that would just like scratch a graph on to show your movements. And they would always cheat them by putting a magnet on it, stop the needle actually moving or something like that. So they're often cheating because they got to make more money that way. And of course, then work like almost an entire day and say that it was better back in that day. So you

Scott Benner 9:35
could say that you weren't driving when you were and then yes, accomplish your task and skip the safety regulations. Oh,

Saxon 9:43
yeah. And then make more money because you've got another job and which is going against competition law and all that stuff.

Scott Benner 9:51
It's interesting because I mean, time is time, right? You know, like, you can't How fast can you possibly drive But the actual task of keeping the truck on the road? It's is it? How technologically advanced? Are the trucks to this point? Do they have Lane Keeping? Do they did they do anything that helps you or are you constantly keeping that truck in between the lines,

Saxon 10:20
while mostly it is still down to the driver to be in control of the vehicle, keeping it but obviously between the lines itself, but the the vehicle I have does, it looks to make a noise, if anytime you get near the white line, it will just cut out the stereo and your lovely voice that comes through the speaker just disappears. And it's replaced with a rumble, which is very irritating as a lot of the time. It's actually it's wrong. You know, the sun could be reflecting off of a puddle. And it will think that that's the white line you're getting there. So this thing's there to try and help with the attention. They call it Driver Assist. But I think it's more driver annoy. There's other bits about though, which are i I've gotten to like because it's built in the Mercedes truck that I have will adjust speed for corners as well. So there's a lot of a lot of corners going through the country back towards the airfield where we're based. And I can just use the cruise control. And it will speed up slow down for all the corners as we go through. And I just need to just I suppose just pay attention and turn the wheel. But it will do all the speeding up and slowing down the braking. coasting up to the corners and the junctions it's it saves saves a lot on my right foot. And because it's automatic, hopefully will reduce me having one extremely athletic calf. And the other one not looking quite so to find

Scott Benner 12:04
that big, big strong right leg of yours. Yeah. So when you when this going back to when it happened, your diagnosis was there. And they give you this month, what are you learning to do with that time? Are you injecting insulin? Is it a meter? Like what do you do? It's only a few years ago. So what did they give you?

Saxon 12:27
They started off. So I received the meter. And I was given Novem mix 50. So as a 5050 mixture. And I was just told to take so many units at breakfast, so many units at dinner. And just try and follow some guidance as to what to eat, which I later learned was probably more advice for type twos managing on diet without insulin. Because it was very hard to apply to say cereal, and then say a beef stew with dumplings that just did. There's just no flexibility with it. But within a couple of weeks when I was back at the clinic, and I said that, well look, I don't really have a schedule with my job. What am I supposed to do with this mixture? You know, I'm taking it in the morning. But if I start at three and I don't get a chance to actually have any breakfast for some hours, you know, when am I supposed to take it? And should would you be interested in the Basal Bolus system as well? What's that? And that's when I was then given some Lantus and Nova rapid and, and to sit, you know, take so many into Lantis. And here's your rapid we recommend a unit for 10. But just start off with four units for each meal and see how you go. You know, if if you said patients like this, because if you want to have some pudding as well, you can just take a bit more, which you can't really do with the mixture. So yeah, I've been on that. But I found Lantus to be very frustrating in that. It was sort of peak about five or six hours in and then just tail off and I wasn't really quite sure. The best way to adjust for that. And I have recently been given a pump, thankfully about seven months ago now. So kind of learning all over again.

Scott Benner 14:33
Yeah. So you went you went about did you go about three years with Atlantis? Yes, yeah. Yeah. Was it? Was it your finding that it just didn't last 24 hours and it also had times where it worked more aggressively than others?

Saxon 14:49
Ah, yes, pretty much. But it was also I don't know if I'm just very sensitive to it or what it is, but they're just comes a time where suddenly, I just do not need as much as I've been taking. And it but it's in you for the whole day. And all you can do is then eat your way out of multiple lows. So I'm one day diving into a garage to buy, I just bought a four pack of chocolate bars. By the end of the day, I got through the entire packet, I hadn't dosed for a single one, and I'm still struggling to keep my numbers up. You know, and it's just like waiting until the evening work. And then finally, put in a smaller amount of Lantis. And hopefully try to get it right,

Scott Benner 15:38
ya know,

Saxon 15:39
and it's so nice to be on the pump. Now that I'm going oh, it's a bit much at the moment. Let's turn it down. And you see change in a few hours.

Scott Benner 15:46
You said two things that are really interesting. So the one was that, in the beginning, the doctor said to you look, it's one for 10 Unless it's not to start with four units and then adjust. They give you a lot of freedom to make that decision on your own. Right. You felt like that was your job to make that adjustment? Yes, yeah. Not like come back, like not stay low for three months or high for three months and come back and see me again.

Saxon 16:12
Yeah, yeah. In a way. So I think was the specialist nurse who told me about that stuff. Yeah, it was like, yeah, here's some rough guideline Dryden, see what works. But then when you do go in, and they look at your numbers and go, Oh, maybe try a bit less? Plan your meals a bit better? I'm trying I really am. Yeah, I know. You don't like to see the lows? No, they do. I?

Scott Benner 16:41
Did you spend a lot of that time eating those lows away? Or did you figure out to change the Lantis?

Saxon 16:49
Ah, both. I'd say. It took me a while to realize that when I would normally say beyond maybe 21 units of basil for the day, that it would eventually settle in at 14. So it was like a third of what I was taking. So eventually, it took me what I figured out that roughly, that was the ratio, I was on like 14 or 21 units, but it did take me a while to get there.

Scott Benner 17:19
Okay, 14, are you

Saxon 17:22
so you got two basil profiles in the pump? And at the moment, so we've got one on 14.4 and the other one on 19.3? Yeah. And it's the for the day that is so that's how many units for the day.

Scott Benner 17:39
What's the how does that shake out? Like is the 14th while you're driving, and you're sitting still on the 19th? When you're moving around more? Or excuse me, vice versa?

Saxon 17:49
No, it seems to be more perhaps if I'm fighting off a bug or if I've been given you know, a vaccination, sometimes, I can't really quite work out why, okay? It just is one or it's the other

Scott Benner 18:05
day, but you don't notice a significant difference when you're just sitting and driving all day versus when you're up and around.

Saxon 18:12
For that, yeah, I can do. Typically, if I've obviously had a meal, I need to try and remember to maybe not eat quite so much. But that's that's a tricky thing I find particularly with work. If if I'm going to have something to eat on them on the road for say, an hour and a half or two hours, I don't want to take a reduced amount of insulin because I will then get really high. But then when I get to the site, I've then got to be active, taking all the straps off the load running around getting freeing stuff up. And at that point, I'm then being really active. So I don't want too much insulin. And that's quite a hard thing to balance. And I'm trying to work out the right amount to say do a temporary basil, which obviously previously I couldn't do with Lantus, right so that was just scuffle load of biscuits before I get out the cab.

Unknown Speaker 19:08
How many stones sometimes it works?

Saxon 19:12
Stone up. Didn't think Americans did stone we put on my 1112 That's

Scott Benner 19:17
funny. I don't I just was trying to be ready because I thought if I asked you how much you weighed, you'd have no idea and pounds but I noticed about 100 kilos. Oh I see oh, let's see everybody we're you're on 150 pounds 155 What do you

Saxon 19:35
sell? I don't really work in pounds and there's some buying beef mints. Then it's one

Scott Benner 19:43
I'm gonna figure it out. We're gonna figure out together how much you weigh

Saxon 19:48
into metrics quite frustrating. You know, I was working through a recipe earlier and it's it's clearly American recipe because there's cups for this and cups for that and it's our please just deal on weight, not volume.

Scott Benner 19:59
How many kilos Did you say you were

Saxon 20:01
about 7575? So

Scott Benner 20:03
you're about you're about 168 pounds somewhere in there. Okay, just so everybody can have context because your basil is it's a little light for your weight, which is great. You know what I mean? Like, it's it's good. Actually doesn't matter much. It just surprised me a little. It was a little it was a little light for your weight. I don't know why it's hit greatest. What do I care how much basil you use. But I was just trying to get that straight in my mind. So because at 19 a day, you're not quite one an hour at fortnight, and you know what, 14, you're more like, what, like point six an hour or something like that?

Saxon 20:44
It's currently on? Yeah, point six, two at the moment. Okay. I do prefer it when I need more, though, because it doesn't seem to my numbers don't jump around as much when I'm less sensitive.

Scott Benner 20:58
Okay, so when you're when your Basal is a little higher, you see more stability? I think so. Yeah. When your Basal is lowered? Do you adjust your meal ratio and make it a little heavier or no? Ah, I

Saxon 21:11
mean, that's another tricky one. So I've heard you say before, you've heard from other people that it's that they either need so much, or they need another amount, until they don't. And in between, it's just chaos. And that sometimes is how it feels like sometimes I feel like I need to lower the Basal because I can see on the graph that I'm just drifting on, like, trending down. So then you try and have maybe a little less of a Bolus. And you just go screaming up straight up. So is that what what do I need? Do I need more or less than clearly, I need less Basal but more Bolus, right. And there's always a few days of it settling in. And then when you finally figure it out? Yeah. And maybe sometimes I'll see I'll get a day, maybe two days where I'm 100% in range, and it's about to change.

Scott Benner 22:03
Like, this can't last forever.

Saxon 22:05
It doesn't know. Yeah, like I'm, I'm really looking forward to getting the pump integrated with Dexcom. They can't bring that quick enough, I don't think.

Scott Benner 22:19
Yeah. And you guys are usually Ha, you guys are usually a couple of years behind when it comes here. Right? Is that how it?

Saxon 22:29
I guess so? I guess so. I went when I went through the pump process, and they showed like several pumps. I think they had a an Accu check. And Donna and those are under Medtronic. And and then they said they're having an IP. So med one come along, which I don't think you have over there. No. So what about the what about the T slim as our we don't currently have access to that within within the trust here? Okay, that's a shame because that's the one I'd really like. And I found out at my six month review that they now offer it I really. So I'm on the IPS omega, which they bought the bought access to the tandem algorithm, but they haven't got it approved yet.

Scott Benner 23:24
Okay. And if so mad is it's not quite I'm trying to remember it. It's not quite tubeless. Right. It's like a short tube on it. Ah, what am I?

Saxon 23:39
I'm not sure. I mean, the tube I've got I think is 60 centimeters.

Scott Benner 23:44
Okay. Yeah, I'm lucky.

Saxon 23:46
So a couple of feet.

Scott Benner 23:48
So yeah, so you do you do have like a pump with a with with tubing on it and then into an infusion set? That's the estimate.

Saxon 23:56
Yes, I got it. Yeah. It's a very, very small pump. It's like half the size of an iPhone.

Scott Benner 24:02
You guys have Omnipod there, right?

Saxon 24:05
Yeah, but my trust seem to think that that's only for children.

Scott Benner 24:09
Really? That's interesting. I mean, do you use more than 200 units of insulin and three days?

Saxon 24:15
She said, No, I don't. Right.

Scott Benner 24:17
Right. Yeah, well, then it's for you, too. And they're gonna have their algorithm too. I mean, it just got it cleared by the FDA here in America a few weeks ago. They're doing a limited release at the moment, and then it's gonna go wider soon. So I don't know when that puts it in Europe, to be perfectly honest. But I mean, I think you're right. I think that algorithms that talk to your CGM and your pomp are a big deal, you know, because all this stuff you've been talking about for the last half an hour. A lot of it isn't going to exist in your life day to day when this algorithms making that decision. It's it's gonna, it's gonna lift a real burden for a lot of people. But

Saxon 25:01
yeah, I'm really looking forward to it just to just free up some headspace not just focus on other stuff. Not that I have to think about too much while I'm fumbling along the road.

Scott Benner 25:13
Well, what is it like, though? I mean, does it add an extra level of, I don't know, like, concern that you're constantly driving. I mean, when people have type one diabetes, they usually put a lot of effort into making sure that their drives are well protected. You know, they know what their blood sugar is, before they start, they check while they're driving. They have stuff with them all the time. But when you're driving all day long, how do you manage that? Do you ever have to pull over to to help yourself? Or is it something you can keep going? Pretty well.

Saxon 25:46
Um, so we can only drive here within two hours of performing a blood glucose check. I think they recently did approve CGM for driving but not a large vehicle. So even though I do have a Dexcom, I still have to pull over and prick my finger for say, every two hours of driving.

Scott Benner 26:11
And that's a vehicle to.

Saxon 26:15
So I could drive my car on just the Dexcom as long as I wear it in an approved place, okay. But then I get better results with it on my pec than I actually do on my stomach or the back of the arm. So yeah, I might as well just prick my finger anyway. But yeah, I have the rules that are given to me by the driving agency that we have here. And so if your glucose is less than five, which I think is 90 over there, isn't it, you know, have a snack, and it's less than four, then you have to retest or correct with some sugar and test again. And once you've been back in range for more than 45 minutes, then you can get going again. 40, which is incredibly frustrating when you get to 3.9.

Scott Benner 27:09
And then you have to wait 45 minutes?

Saxon 27:12
Well, it's an hour really, because you've got a correct test again, and then 45 minutes after, after that you can go again. And that's yeah, it's very frustrating. How on time how strict

Scott Benner 27:22
are the rules? Like if you got caught? Not following them? Would you get a ticket? Would you lose your license? How would that work? Do you know?

Saxon 27:33
Um, potentially I could lose my license, you know, being control of a 44 ton vehicle with? Well, it would be classed as being not fully in control of the vehicle, I suppose. It's they were set out as a dangerous weapon in the wrong hands. And yeah, they're worried about if you're low, it's affecting your concentration. And let's say that it takes at least 45 minutes for your brain to recover from a low which I imagine if you're prior to being able to keep yourself in range with CGM that anytime you got below five, he probably did feel absolutely rubbish. And therefore we enter a proper hypo. Yes, you did need to probably stop because I do try to keep myself as in range as possible. I actually feel okay when I'm around the for just a little bit less, you know, just just a tiny bit less. But obviously the clinics will tell you that they're worried about you losing hyper awareness. But I thought I can function just fine. I've only had one occasion where I did think yeah, I really do definitely need to stop. I'd just helped another driver who's loaded. All his straps came loose, loose when his loads shifted. So I just helped him strap it up, got back in the truck and start to drive down the road again. And I felt like the entire cab was shrinking around me. And I just looked at my watch to see the see the number like oh, okay, yeah, that's dropping fast. Now this is what it means when they say you might act drunk or feel drunk with it. And so I just scuffed a load of jelly babies and orange juice and I'm pulled over tested and was like Oh 2.2 Yeah, that that felt low. Wow, it didn't enjoy that.

Scott Benner 29:40
Gee vo Capo pen has no visible needle, and is a premixed auto injector of glucagon for treatment of very low blood sugar in adults and kids with diabetes ages two and above. Find out more go to Jeeva glucagon.com forward slash juicebox G voc shouldn't be used in patients with insulinoma or phaeochromocytoma, visit G Ro glucagon.com/risk. Here you are using insulin, and you'd like to do it more deftly. But you don't want an insulin pump. That's fair. You don't have to get an insulin pump if you don't want to. But right now what you have right is an insulin pen that just, it just acts as the thing that measures and puts the insulin in, you need something more, you need the in pen from Medtronic diabetes. Now the end. Now the pen is an insulin pen, but it connects to an application on your phone through Bluetooth. This app does many things. For instance, it has a dosing calculator shows your current glucose, your meal history, active insulin remaining glucose history, dosing history, activity log and reports. You might be wondering how it does that. The pen does all that with the help of your CGM. Go check it out in pen today.com. When you get there, you're gonna see the pen, you're gonna see the app, there are forms to fill out if you're ready to try. And there's going to be information that you need. For instance, you may not have known this, but in Penn offers you 24 hour technical support, hands on product training, online educational resources, and who Holy heck. Now this offer is available to people with commercial insurance, of course Terms and Conditions apply. But you may pay as little as I don't even know what's the impact. Imagine the number think of a number in your head. The number is $35. pay as little as $35. That is a possibility. Go check it out in Penn today.com. There's even a Frequently Asked Questions portion of the website all the way at the bottom, it's going to fill in anything that I haven't told you in pen today.com Take the right insulin dose at the right time with the in pen from Medtronic diabetes. Don't forget, it's super simple to support the podcast use my links if you're interested in in pen. Or if you're interested in Chivo caipital pen or any of the sponsors. There's links in the show notes of the podcast player you're listening in right now please tell me you're listening to the podcast player. If you're not, please find an audio app that you like and subscribe it. Anyway, I digress, or there are links at juicebox podcast.com. You can also just type them in with your browser. Your fingers, I meant, you know type of the browser you type with your fingers into the browser. I think we're getting away from the point. Let's get back to Saxon and his lovely accent and story. Yeah, crap, I forgot to tell you something I have to say hold on writing. In pen requires a prescription and settings from your healthcare provider. You must use proper settings and follow the instructions as directed. Or you could experience high or low blood glucose levels. For more safety information visit in Penn today.com. All right. I don't want to get yelled at now let's get back to the show. No kidding. So you say that you feel pretty good around a four which is the 72 here but 2.2 is in the 40s it is 40 Yeah, that's low.

Saxon 33:04
Yeah, yeah. No, I didn't enjoy that.

Scott Benner 33:07
So that just activity of jumping around that truck and pulling those straps and re sensing that load made you low.

Saxon 33:15
Yes, it did. And then I was struggling with lows for the entire day. So it's just one of those moments where my body's decided that it doesn't need as much insulin but it never tells you that it's going to have that kind of day you just have to work it out for yourself. Well

Scott Benner 33:28
yeah, you don't know the kind of day you're going to have but Saxon I would bet that it's the activity and the you probably kind of activated the insulin that was already in you so I'm I'd be surprised if it if it isn't true that when you're sedentary and not moving that you need more insulin to keep your blood sugar stable at a certain number than you do when you're active.

Saxon 33:49
Oh, I wouldn't disagree with that. Yeah, yeah. So

Scott Benner 33:51
I think you just jumped out started moving around that other truck and you got you caught alo your prompt did you have active Do you remember that moment? Did you have active insulin had you eaten in the hours prior to that?

Saxon 34:03
About Yeah, probably about an hour and a half before so yes, admittedly the rapid would have been peaking at that point. Right you know, initially I was just thinking of trying to keep the other guys safe because he had to his straps are dragging on the road so I had to just try and keep them safe whilst whilst that was happening. But as I say later on in the day, you know, just driving around and like oh creeping down again and again and again.

Scott Benner 34:30
It just stopped then after that.

Saxon 34:33
Yeah, I'm for a few days that I was on a lower amount of lattice again.

Scott Benner 34:40
But but now the moves around Yeah, but now the pump has made all that easier for you. Yeah, easier. Yeah. Not that easy, just easier. Well, I'll tell you,

Saxon 34:51
I knew wouldn't be a fixed and the doctor did say to me when when I was approved for it that he that I would not get better. results than what I was already achieving with pens. Just that I was less likely to burn out from the effort, which they seem to think I'm putting into it. The very wide I get stressed with the effort and it's like, no, it's there is a number, correct it move on.

Scott Benner 35:17
Yeah. Well, so you said something much earlier in the conversation that I related to a lot. The idea when you're injecting a slow acting insulin like Lantus, you know, lever meritocracy, but whatever you're using, that it's in there, and now it's in there, and you can't do anything about it. I used to have that feel at least you're an adult, right? Like, we used to inject that into my daughter when she was two and three and four years old. And it was the I thought that was almost the worst part of it is that you had to put it in, but you weren't sure if you were going to need it. And then you had to work backwards from it. And you know, at least you can, you know, tell yourself, I have to eat this and you can do it like you should try tell him like a three year old that's not hungry that they need to eat something because they they look right through you. But But it's the that you just brought back a memory when you said that that really sticks with me that I felt that way at the time. Like every day, you're like, I'm gonna put this in. And I hope we need Yeah, you know?

Saxon 36:18
Yeah, well, I mean, watching my mom trying to feed my brother and sister all those years ago was that look like hard enough work without the extra complication of managing diabetes for your daughter as well?

Scott Benner 36:30
No kidding. So are there other autoimmune issues in your family line? Or does anybody else have diabetes?

Saxon 36:39
There is no diabetes that we are aware of at all in neither my mom's or my dad sides. I've heard you mentioned possibly that bipolar might be a thing that linked with it. We suspect that my grandma might have had it. But I mean, she died in 91. So I think back then they just call it hysteria. But that's about all that I'm aware of in terms of anything autoimmune in the family.

Scott Benner 37:10
You know, I have to admit, when I start having bad days, I'm going to start saying I have hysteria because that sounds like a nice way to describe a day that's gone wrong. What's wrong with you? I'm a little hysterical.

Saxon 37:25
Sounds like good plan. Not today.

Scott Benner 37:27
Any thyroid stuff?

Saxon 37:29
Not that I've heard of.

Scott Benner 37:30
Okay. So it's fair to say that you were completely shocked to have diabetes?

Saxon 37:37
Yes, absolutely. I think we've, well, the only thing that makes sense to it was earlier on that year I had flu. That's, that's the only thing I can really see as being a trigger for it. Because for about three months, I just had absolutely no strength. And then come the summer, I start seeing a few other symptoms, which I can now relate to it. Dealing with a little bit of thrush, and then later on, started losing weight. And then I was like, Oh, I'm in the thick of that. I went out for a run. I thought start running. And that night, I had to wake up five times to go pee in the light. Well, obviously, it's not actually related. I don't think but, you know, that kind of put me off running a little bit. And then it's like, okay, every hour, I'm driving on the road, I have to pull over what's going on? And yeah, it was it was quite a shock. For me. Even in the hospital. The doctor was asking me like, Do you have any pain in your stomach? If you've been throwing up at all? No. Are you? Are you tired? A lot? Yeah. Sometimes I'm up at 1am to start my job. Okay, you pick it up? Yeah. I like coffee. You can write so many of these things off. Sure. But when you when you really have all the symptoms, they're like, oh, yeah, they're all there, aren't they? Yeah, this makes sense.

Scott Benner 38:57
The thrush is like a yeast infection in your mouth. Right?

Saxon 39:01
I actually I had it more in other sensitive areas. Yeah. And so there was a few a couple of like conversations I suppose with well, my now ex wife but so that I don't know what's going on here. You know? Yeah, maybe not tonight if you don't want to catch us, I don't know where it's coming from. You know, and I was seeing the doctor. I went to the local doctor a couple of times and I was getting some creams and then one day I went and so it's still not going away but I now feel like I'm also pulling away my weight and I'm ah, that sounds like diabetes. Let me go get the meter like scuze me

Scott Benner 39:37
Wow. So the thrush alone didn't get him but you mentioned the urination. He went right to diabetes. Yeah, because he saw the high blood sugar because the yeast infection Yeah.

Saxon 39:49
Why well as the weight loss as well in the

Scott Benner 39:51
weight loss, how long did it take you to think to diagnose it a couple of months.

Saxon 39:57
Ah, I suppose from actually seeing Dr for that yeah, probably was a month or two. But I think I can trace symptoms back about five or six months.

Scott Benner 40:09
Wow. That's a long time. It's not just not something you expect as an adult, especially if you don't have in your family. And it sounds like you're onset might have been a little slow. Do you remember what your blood sugar was? When? When he got that meter?

Saxon 40:25
Well, they when they tested me in the hospital, it was 29. Okay, no, I've quite got the conversion for you. There.

Scott Benner 40:34
I got it. It's about 522. For hear okay. Yeah. Which is high, but not the highest number I've ever heard.

Saxon 40:42
How did you feel? I've heard some high numbers on your show. Yeah, some

Scott Benner 40:45
sometimes you're like, wow. But how did you feel at that point? The tiredness was it? Was it getting worse? Or was it just that you were Yeah, yeah. Yeah, I

Saxon 40:57
suppose say. I mean, I was quite happy to get myself into bed at eight o'clock some nights. And then once I started taking the incident was like, oh, yeah, yeah, I've got the energy back. But it's you do get used to feeling rubbish. And you, you just get on with it. You adapt.

Scott Benner 41:13
I'm gonna ask you a question. It's none of my business acts. And so you can tell me to go ahead, screw off. But did the diabetes have anything to do with the end of your marriage?

Saxon 41:23
Um, some people would think it like that. But no, I think I can honestly see patterns in her behavior long before that, which led up to us getting divorced. Okay, was it but maybe it was a little bit the end? Well, when we split, she told me not to change. Nope, don't change who I am.

Scott Benner 41:47
Okay. Well, that's good. Yeah. Don't just not for me, but I gotta go. How long? Yeah. How long had you been married?

Saxon 42:01
About five years at that point. We've been married. We've been together about 10.

Scott Benner 42:06
Okay. All right. Well, I'm sorry, that happened. I was just I felt like I felt like I should ask.

Saxon 42:12
No, no, no, that's, that's absolutely fair enough. But you know, I'm here to be honest. But it's, I'd say it really worked out for the best in the end. Obviously, we weren't for each other. And I then met somebody. I'd say as far fire lovelier pretty quickly afterwards.

Scott Benner 42:29
How do you meet a girl when you drive a truck all day?

Saxon 42:31
Well, that's a tricky thing, I suppose. Luckily, I do four days on four days off. So I'm only working half the time so I can actually meet people. But you know, in this day and age, it is. Tinder, I suppose, isn't it?

Scott Benner 42:46
Yeah. Oh, yeah. Swiping around. I gotcha. Well, that makes sense. Yeah. Well,

Saxon 42:49
yeah. I just said I'm not in the I'm not in the right place for relationship having just come out of the long term one. So you know, I'm just looking to meet people. And, and Natalie said to me, that she was about to go to America. So perfect. And two and a half years later, she's still here with me.

Scott Benner 43:08
Oh, you changed her plans? Yeah, look at you. That's, I see. You're, you're flexing a little bit there. Saxon. I see what's going on.

Saxon 43:22
Being honest, and nice, actually was something she wasn't used to. So there was a reason to stay.

Scott Benner 43:28
That's excellent. Oh, good. I'm glad for you. Is she is she very involved in your diabetes? How much of it? Do you let her see?

Saxon 43:36
Oh, let's see the whole lot. But she's not. She's not supposed like involved in terms of having to take any care. But she's a she's a nurse and she has found it very interesting. And has given a lot of confidence, seeing what I do. In terms of actually then treating the patients that she has. Okay, so she's, she's not scared of the of the insulin

Scott Benner 44:06
anymore. Wow. She works in a hospital.

Saxon 44:09
Yes, yeah. So when I met her, she was a critical care nurse. So she should manage people with DKA newly diagnosed or having other problems, various other types of insulin needs. So I think somebody would say, due to a brain injury, the body was or the brain wasn't telling them to release the insulin. So yeah, so it's things like that.

Scott Benner 44:39
Okay. You know, I will tell you that I had a fair amount of stress just now when I said she works in a hospital because I couldn't decide if I should put the in front of the in front of hospital or if I because you guys guys just say hospital, and I didn't know what to do and I panicked.

Saxon 45:02
Yeah, I'm not too sure what the right answer actually is here. Do we say go to a hospital or go to the hospital? You know, sometimes the the north of England, don't use the word there. You know, do you want a cup of tea?

Scott Benner 45:16
I'm just telling you, it's shot me into a panic, I could. So if you're me, I have this weird, like, skill or life thing that happens to me, where I'm a little aware, when I'm recording this podcast, I'm a little aware of my next like, eight words before they come out of my mouth. And so you're talking and I'm asked, I know, I want to ask if she works in a hospital. And I can just I can hear voices in my head fighting going. Don't say the US say it. Don't say.

Saxon 45:47
That sounds a little tiring at times.

Scott Benner 45:49
I was just like, I don't want to like I don't know, I, you know, it's stupid. Doesn't matter. But I've just interviewed enough people from, you know, from England, where I'm just very aware of it. And, and I still can't get it right. So I knew I whatever. Cannot we know what you mean? Thank you. Can I ask you a question that there's no way prior to two weeks ago, I would never would have asked you. How close do you feel to Ukraine right now?

Saxon 46:18
Oh, ah. Well, I don't know. I mean, I'm in a country where half more than half of them decided to get away from anything to do with Europe. So I'm not really too sure. But I doesn't sound nice. What's happening over there.

Scott Benner 46:34
But but your own personal safety? Do you feel close to it?

Saxon 46:40
Are there I mean, I suppose, like the far east of Europe to us, but who knows how far Putin might decide to reach? But we don't seem to be doing much to, to aid them for some reason. So maybe we'll be okay. I'm wondering if our politicians are a bit too scared to really provide proper assistance. Now, I think we're arming the Ukraine, but we're not sending troops. So I don't

Scott Benner 47:12
know, that seems to be how they're all handling it. I just wondered if because you're attached. And you're there. You know, like if it felt like a regional conflict that you have no real concern about reaching you? Or if it feels different? Because it's closer. That's all I you know, I mean, from here. It you know, it's horrifying. And concerning, obviously. But I don't feel like it's going to be here anytime soon. I just didn't know if like the distance made it different for you. But it sounds like you are having a fairly similar experience to the one I'm having.

Saxon 47:49
Yeah, I don't really know what to feel about it. I'll be honest. You know, I have a friend from Estonia. And at some point, I'll find out what what she thinks about it, because they're only they are another country or to a long from from Ukraine.

Unknown Speaker 48:04
Yeah, that shows more

Saxon 48:05
concerning for her and the family that she has back over there, having previously been a part of the Soviet Union.

Scott Benner 48:12
Wow, it just all seems you got that little tiny bit of water, but then I gotta help you.

Saxon 48:19
I mean, it's helped us but before if, you know, for those people who can't let go, the Second World War,

Scott Benner 48:23
slows them down a little bit having to get on a boat and something like that. Oh, my gosh, do you see the world? Like, very does the internet? What am I? What's my question? Like? Does the internet make everything seemed local at this point? Like, do you have more understanding of the United States, for instance, in places that are far away? In your 30s that you didn't your teens and your 20s?

Saxon 48:52
Um, possibly, I try. I try and stay off social media, because it's just, it's just saturated with rubbish. And I don't like going on there. And the news is just too damn depressing. Right. So I have to admit a lot of what I pick up about the world these days, I actually get from here and your guests, for wherever they are. Because at least getting somebody's own personal story with it. But you turn on the news, and it's like, oh, like for a couple of years. It was Brexit, more Brexit, you know? And it's like, Oh, can we have something else? Oh, we're talking about COVID. Okay, now that's getting boring now. Can we talk about Brexit again? No, that's still bad. Yeah, there's just been very little to make me feel like I want to tune into the news. I wonder I thought I'll just find out what's actually going on in the world. Again, after like months of not listening to the radio. And, oh, Stephen Hawking died. Oh, that was tuned in now.

Scott Benner 49:55
I'm sad. I was just depressing. Yeah, I know. We were on a car trip. The other day, and my wife said, Put the news on, I want to hear about Ukraine. And we listened for, you know, 10 or 15 minutes. And I don't know, a couple hours went by, and she's like, put it back on again. And we put it back on again. And I realized they were just saying the same thing. And then I start paying attention at the top of every hour, they were just making the same statement, and then having the same conversations off of it over and over again, I said to her, I was like, There's no new news here. Like they're just, they're just re saying the same thing over and over, you know, so we,

Saxon 50:30
yes, 24 hours of news, but it's no longer new.

Scott Benner 50:34
No, and he said it. My favorite part is that every time they say something, they go, this is breaking news. I'm like, Everything can't be breaking. It's like something I don't know, I just I agree with you, I I do my best to stay away from just medic mass market media news. And even like you said, like Brexit is a good example. You start getting involved in these like political discussions, you realize that you have almost no say in how this goes. And it's going to do what it's going to do anyway. And, and being twisted up in the, in the moment to moment of it really has no value to you. It doesn't make you better informed. It just sort of makes you you know, I think it makes you just kind of more nervous and anxious, honestly, about something. Yeah, no effect on.

Saxon 51:23
Yeah, I think I spent spent a day listening to like COVID updates and getting a whole bunch of stuff. And by the end of the day, I felt awful. And I'm gonna go back to audio books, podcasts, whatever, you know, let's get some music going on. Let's just stay away from the radio.

Scott Benner 51:38
How was that driving a truck during COVID? Like because you you travel a distance, then you have contact with people, I imagined that that change what happens when you get to a destination or do a pickup?

Saxon 51:51
Yeah, for a while that was that was definitely a different experience. You know, arriving at the site not being allowed inside though. In not allowed in a warehouse, they'd come out and meet you. As long as you've already masked up even though you're outside. Take your keys off you still but they go in a bag. You know, that hiring portaloos to be in the yard so that you don't go inside to use their toilets? That's yeah, that was That's strange. You know, not everyone is completely relaxed yet either. I yeah, in some ways, it was kind of nice, because you know, other places where they normally would take your keys and then sit you in a different room. You weren't allowed to stay in your vehicle. They stopped all that. So it was like finally I can take where I'm already comfortable with my own stuff and my food. Yeah. I don't really have to deal with that too much now. Because when I first got got in touch with you, I was part of the general haulage company and we were moving a lot of just various goods. And now I'm part of a crane company. It's we've just gotten a building sites. You know, just take take the crane, drop that off, leave. You know, it's not too bad. Now.

Scott Benner 53:11
Can you explain to people step by step how to pee in a bottle while you're driving?

Saxon 53:16
Um, I would imagine, you'd imagine, well, there's got a big enough spout. I personally haven't tried it because I don't want to get it wrong. And I have all over my seat. But I know, I remember one man saying he, he met up with a couple of where he met a couple of Irish drivers in Liverpool had a had a couple of pints with beginners of Guinness with them. And then they set off towards Dover to get on the other channel tunnel. And he said after 10 hours, he just had to stop and pee. And they just kept going. So obviously they've masked Yeah, yeah, I'll just pull over. I mean, now I have to anyway. Yeah, I won't do that.

Scott Benner 54:11
I imagine the wide mouth bottle is pretty much the it's the key to the whole thing. Honestly, right.

Saxon 54:17
I mean, there's times we okay, like you park up in a service station for the night and takes like three or four minutes to walk inside to the facilities. And it's chucking down with rain. You're like now I'm just gonna pee in a bowl tonight.

Scott Benner 54:33
Are there places that when you stop, like have shower facilities and things like that for you?

Saxon 54:39
Yeah, yeah. There are a few of those arounds. Not necessarily good, but they are available.

Scott Benner 54:46
Okay. Not something you would want to use on purpose, just more of a necessity.

Saxon 54:50
Yes, some of them aren't too bad, some of them but there's a couple of places where they're really nice. A lot of them are just about adequate One of the one of the private truck stops that we have, I don't think it's particularly good for the we have a payment system. So that you can just give you registration, the company is billed, the driver doesn't have to pay over money and wait for any expenses to come back. But because this company then takes a percentage, the truckstop has decided that to get that money back, they'll then not include a shower token with the parking. So we then three pounds to have a shower. But then you also have a ticket to put into the machine to give you so many minutes of water. And then when you press the button that I know, it's like at the swimming pools, you press a button, you've got so many seconds of water, and then you've got press it again. Well, the buttons and these showers pop out again within two seconds. And half of that water is coming out of the back of the showerhead and running down the wall. And it's it's no wonder a lot of people kind of get disenfranchised with I suppose this lifestyle is is a bit more of a lifestyle than a job. When that's the kind of treatment or care that you get for almost dedicating your life to

Scott Benner 56:20
Yeah, it's hard. It's hard work to I mean, it takes a lot out of you. I imagine there's you say you work for the f4 off but the first day must be recovery. Right?

Saxon 56:30
Hey can be yes. ticked off to say that a 15 hour day. Yeah, I tried to have the first day is just take it slow, man get some chores in the, you know, the day after. But yeah, it can be like that, you know, I've had times where I've had to be at work for three o'clock in the morning, on the first day, and then I've not got home till 11 o'clock on the fourth day. And yeah, that's kind of takes away a little bit of your weekend as well. But you know, both at both sides of

Scott Benner 57:00
that in a in a 15 hour workday. How many of those hours do you think you're actually driving?

Saxon 57:07
Ah, well, we're limited to nine hours of driving in a day. Twice a week that can be increased to 10. But usually it might be say seven, eight hours of driving.

Scott Benner 57:21
And I recognize that you're happy in your relationship. But I have a question you might have information about is the idea of Lot lizards. Is that something that translates to you a

Saxon 57:32
lot lizard?

Scott Benner 57:33
Do you do not know the phrase?

Saxon 57:36
I'm gonna assume from lat You mean like a parking area? Is this going to be do with like ladies of the night? Yes,

Scott Benner 57:42
it is. Is that a real thing in this world? From my movies,

Saxon 57:47
I've heard of it. I haven't experienced it. Okay.

Scott Benner 57:51
It's not it's not like, it's not like I made to believe in a movie where you pull into your parking spot and just you're swarmed by prostitution.

Saxon 58:01
No one one man did tell me that happened at a particular service station. It was just like, every 10 minutes, there's somebody knocking on the door, anything just go away. I'm desperate for sleep.

Scott Benner 58:11
Yeah, I can't imagine how exhausted you must be at the end of a of nine hours of driving. We. So we just drove to take art and to visit a school college she's considering going to, which I guess is a university in your mind. And it was crossed the country. So we kind of took it a little slow and easy. But by the time we got there, we had been in the car about 14 or 15 hours. And you know, with a couple of stops here and there for you know, restrooms and food and things. And we stopped at a hotel. And we were waiting at the front desk to check in. And my wife goes, Are you okay? And I said, is the room moving? Or is it me? Like you have that weird feeling like you're swaying but you're not moving? And if that makes any sense to you, maybe it does. But yeah, yeah, I found it very disconcerting. I don't normally drive that far in, you know, in a shot, so I don't know what that is. It just felt like exhaustion, but um, I'm not certain. A probably

Saxon 59:13
is if you're not used to concentrating for that long.

Scott Benner 59:17
Yeah, that's the hardest part. Isn't it? Just the paying attention?

Saxon 59:22
Yeah, fun. It can be like most days, it's, it's not too bad. You know, usually lasts like, Don't you get bored, but I just consider it more that I'm absorbing my choice of entertainment whilst I'm driving. The days when it's heavy rain, if it's really, if there's heavy fog, then I find it very tiring. Because then I'm really having to focus and try and peer through the weather conditions. That's a struggle,

Scott Benner 59:51
and you're moving heavy equipment. That's not that isn't that not like cases or boxes that can get stacked up and the distribution of weight is probably a little different for the stuff you're pulling to, right? Because the I'm kind of guessing about moving cranes around. But it sounds like it's not as stable as far as the the load goes.

Saxon 1:00:14
So it's not too bad. To be honest. If it is a heavy load, it's usually because of the ballast weights, which then just go on the deck. So that's kind of at least giving you a reasonable center of gravity. Stack a few bits on top, but you just, if you're not sure, if it's quite secure enough, put another strap over it, just get it down really tight. Yeah, sometimes they don't quite put stuff in the right place for you. And that more is has an effect on your, on the traction of your your drive axle.

Scott Benner 1:00:49
Do you learn a little bit Do you load and unload? No, I don't know. There's people there that handle the basically the packaging of the crane onto your truck. And then you drive it away?

Saxon 1:01:00
Yeah, yeah, in our yards. Yeah, we have the yard men operate the cranes, and they'll lift, lift the stuff on. And then we secure we take it to the site, where we then have the directors there who then do sort all the lifting off when they're erecting the crane or when the dismantling they're the ones who are putting it all on. And again, then we just secure it. But we're not actually allowed to participate in the loading or unloading of the vehicle. Just securing it and getting it there.

Scott Benner 1:01:33
Gotcha. Is it weird to stand there and watch other people work? Ever feel like you can like help a little bit like, oh, here, I'll get that like, just so they don't look at you like

Saxon 1:01:47
I mean, there's times like that, but there'll be loading stuff on. And whilst they're doing that I'm just throwing the straps over. So I'm still usually doing something. But yeah, there are other times if they're really struggling with taking the crane apart. You know, I can't get involved in that. And so I just sit there and I think I had one day in central London. I was there for 10 hours, and they still hadn't put anything on me. And it turned out Yeah, they were struggling to bash the pins out of the crane because they bent and flight USA after about 10 hours, they finally put a couple of bits on me. And then I just had to get out of London before my before my hours ran out for the day. But yeah, for a day like that. So I guess I'll watch another movie. I'll I'll go asleep. And I'll take some some Warhammer miniatures with me. I can just paint up in the cab while I'm waiting for them. Yeah, my job now involves quite often a lot of sitting around.

Scott Benner 1:02:42
No kidding. Wow. So you, you bring your hobbies with you even because you know you have downtime.

Saxon 1:02:48
Yeah, yeah. That's cool. Yeah, it's not bad. Some of the other guys say like, they knew that when they're on their third movie of the day that they really weren't gonna go anywhere.

Scott Benner 1:02:58
You start binge watching shows, and you're halfway through three seasons you like what is what is happening, right? Well, listen, does it pay? Well? Is it a good job?

Saxon 1:03:09
Where I am now? Actually, I would say yes, it is. It's maybe not paying quite so well, during the winter months because of the wind. You can't really lift much when you know when the storms are coming in. But yeah, I think I think where I am now is fairly good pay. And a lot of other haulage companies are coming up to meet that pay because they're they've been desperate to hold on to drivers lately,

Scott Benner 1:03:34
right? Yeah, there's the craziest thing I've seen here during COVID. Is that jobs that you used to think of as like, jobs that like teenagers would keep or you know, like high school students, stuff that was for after school is suddenly paying like, you know, $20 an hour. And I just feel like they can't they can't keep anybody so they just keep jacking up the pay trying to hold on to, you know, two workers. Yeah, you know,

Saxon 1:04:01
it's Yeah, yeah, no, I've seen a lot of that. But the last company I was in, they lost a load of people with a dangerous goods license. So they up to the bonus for that. And then the local drivers a whole load of them left. So they upped their pay. And then the national trampers they said, they're the ones who sleep in the cab for the week. Like five of them left in two weeks. So again, their pay went up. And the four of us that we're doing four days on four days off there we went, what about us? And I said, oh, there's a queue of people waiting to get in your trucks. We don't need to have your money. So I then heard about this other job with a crane company. I'll see you

Scott Benner 1:04:46
that's not true. Goodbye. Yeah. How long does it take to to train like if I if I showed up there in my mind, and I was like, I'm gonna drive these trucks. I'm gonna go do what's x and does I have noticed I'd like no training at all, how long would it take me to, to get the license.

Saxon 1:05:06
Um, I think it took me three or four months before in turn. So applying for the provisional category on your license, getting in the medicals doing the theory, having the first test was for just driving a rigid truck. So you know, like just one without, without a trailer. So then you can just go and drive one of those once you get your license to get the test back from that. And that was, I did a three day course followed by a test. Because you already know how to drive, they're just adjusting your driving style to a bigger vehicle for the size. Yeah, so that was just wait for the license to come back. And then get booked in to do the next category, which is to have the trailer on the back as well. So that was about three or four months, at the moment, because of COVID. Getting licenses back from the DVLA is as taking so long, I think like, because I have to have my license is on a one year restriction, because I'm on insulin. So every year, I have to submit renewal for medical grounds, see a couple of doctors in the meantime, I can continue to drive until I'm told otherwise. But I am having to say keep renewing the license. And last year that took nine months to get the license back. My my brother who is I think it's gonna be 19 this year. He he's applied for his provisional license to confer to start driving. And he he sent that off, I'm sure in September, he is still waiting to get his provisional license back. So at the moment, he is just stuck in the town that we've come from. You can't go anywhere yet. Yeah, I don't know if he wants to. But he doesn't have the option.

Scott Benner 1:06:58
He just can't. Wow.

Saxon 1:07:00
They're just taking so long to do anything. Right. And you can't get on the phone to them. It just says there's no one available. Thanks. I just sat through a five minute message to get to this point.

Scott Benner 1:07:10
So it's a nine minute wait to reset a one year. A nine month, nine month wait to reset a one year cycle. Yeah, that's, that's not working.

Saxon 1:07:21
Yeah, no, it seems like that. And there's I have another colleague as well. There was also type one, and you were submitted maybe a couple of weeks apart for our licenses. And they said right, okay, well, I'll do a bet with you. Whoever gets a license back first has to give the other one a packet of jelly babies.

Scott Benner 1:07:38
diabetes bedding, less fun than the other? Yeah, yeah.

Saxon 1:07:43
Do you usually get some a lot less trouble?

Scott Benner 1:07:46
No kidding, right. Do you when you submit that for reinstatement basically does that? Is that something you have to get from your doctor? Do you have to write down logs? Do you have to send them numbers? Like how does that work?

Saxon 1:07:59
Ah, so yeah, so I just let the DVLA know that I wish to continue driving, I wish to keep a category on my license. And then they say they send out a questionnaire and then there's stuff in there. Like, you know, ion insulin, have you had any severe episodes? And you're allowed one a year with help? You know, that's okay, any more than that? And then they really going to question your ability, you know, how many hypose Would you say you have, on average, you know, like so many a week or so many a month or hardly any? Have you lost any limbs, you know, all that kind of stuff. And then they say, oh, we'd like to get some more information. So we've arranged an appointment for you with a doctor. And so then the doctor looks through your, your meter to just see the last three months of sugars, just to show that you're not having too many hypose. And if you are that you're correcting them. And you think, well, you're here, aren't you, you're still alive. And after another like month or so of that form being sent off, they say we want some more information. So we've now arranged an appointment for you with an independent doctor. So I then have to drive another hour up the road friend of mine who got perfectly good hospital within 10 minutes. So I have to go to another hospital and see somebody there. Who does exactly the same thing. Yeah, looks through the last three months of readings, says yeah, okay. I asked you, I asked you a couple of questions about you know, do keep carbs within easy reach. If you do have a low, you know, what do you do then when do you feel a low coming on? Just write all that down and sends that off, and then you get your license back for another year. And then you've got to repeat the process. Yeah,

Scott Benner 1:09:56
that sounds

Saxon 1:09:57
thankfully. Yeah. Oh, We have already done it a couple of times so far, but I'm sure it will get tiring.

Scott Benner 1:10:04
Sucks. And I appreciate you doing this. I have one last question that has absolutely nothing to do with any of this. And if you think it's silly, tell me but in your mind, how do you think of the Beatles? Like when you think of Paul McCartney, do you think he's a genius? Who just like, do I think differently of him? Because he doesn't come from here. Does that make sense?

Saxon 1:10:24
Oh, ah, I would say I prefer the Rolling Stones.

Scott Benner 1:10:28
Okay. All right. You're younger too. So like, it's interesting that it's interesting that like, it's not music, that like you didn't grow up with it the first time. Obviously, I didn't either. But I'm just interested, though. Like, like when something comes from the place you are? Is it like, is there lore around it here that doesn't exist? They're like, I don't not love the Rolling Stones. I'm just interested. Like, do you think Paul McCartney is a genius?

Saxon 1:11:00
I know, I don't know. Like, I think the song Hey, dude, certainly ruins any oppression, I have any appreciation that I have for him. Because it just goes on for far too long. I won't deny that the Beatles have clearly had an influence on music. You know, I respect them for what they've done. And for the, I suppose the ability they had to play like when they went over to America to be able to play through the screaming crowds in the stadium with the tiny little speakers behind them, and they couldn't hear each other and be able to do that when they got there. But no, they're not really for me. A bit soft. I have to say for me, though. That's the thing. You know, I like the Rolling Stones because they they rock a lot more. I like it heavy, heavy.

Scott Benner 1:11:51
It's amazing. Those guys still play. It's crazy. Like Mick Jagger still puts on shows. Paul McCartney pulls himself out once in a while and sings it's like, it's ridiculous. Yeah,

Saxon 1:12:01
you know? Yeah. I mean, I'll see the Rolling Stones drummer died last year didn't make recently. Yeah. Yeah. And then Keith Richards just needs an eye and when he goes on stage, but otherwise, that's yeah, I don't know. But I mean, what I'm looking forward to seeing later this year is Ramstein. So that's more my, you know, my tastes.

Scott Benner 1:12:26
So when you go out to is that going to be a festival? Or will you just see

Saxon 1:12:30
this? This is a concert in in a stadium? Okay. I'll have to go to Wales for that one. But I've been waiting two years to get there.

Scott Benner 1:12:38
Yeah, and nobody's I haven't seen a live show and quite some time considering going and seeing some comedy soon. Which seems like that seems like it's okay to do. So. Yeah. But there's been a long pause.

Saxon 1:12:50
Well, you vaccinated now.

Scott Benner 1:12:51
I am I have a, what do I do, we did j&j That I did j&j the first time. And then I did Maderna. The second time to give myself a little, a little flavor from a and a little flavor from be just the case that

Saxon 1:13:07
well, you've done what you can now You're about as protected as you gonna be. You might as well get on with it.

Scott Benner 1:13:13
Yeah, no, I agree. Well, oh, I didn't know you were listening to metal music that might have changed our whole conversation about that.

Saxon 1:13:20
Oh, yeah, I think I have heard you mentioned Metallica a couple of times. Well, when

Scott Benner 1:13:23
when I was younger, we listened to a lot of Pantera. And, and stuff, stuff along those lines. I have to admit, now that I'm older, I don't know that I have the like, I don't know that my taste for it is the same anymore. But I still enjoy it periodically. But oh

Saxon 1:13:42
no, I understand that. I think I'm listening to a lot more podcasts and audiobooks than I am music these days. But every now and then I just do need a reset and just put on something good and heavy. Yeah. Yeah.

Scott Benner 1:13:56
I often think that needs to be done. As an adult. I've achieved a level of stereo in my car that my 19 year old self would have appreciated a lot more than I do.

Saxon 1:14:08
Yeah, fair enough. I mean, I think I've heard you as well having to try and listen to rap music so you can still relate to your son. That's, I don't know if I'm particularly looking forward to that when I finally have some children. Like

Scott Benner 1:14:22
I can't even begin to wonder if you made a baby right now. 15 years from now what I don't even know what music would be and what you would have to try to, to learn to enjoy.

Saxon 1:14:33
Oh, yeah, I don't know. But I'm sure Natalie will be able to cope with that. Because I've talked to other people about music is that well, I like heavy metal. She likes everything else.

Scott Benner 1:14:43
Do you think she'll be at cope? Do you think I don't want to put you on the spot. Do you think you're gonna get married?

Saxon 1:14:50
Oh, that's booked for May next year.

Scott Benner 1:14:53
Oh, okay. Congratulations. That's lovely. Yeah,

Saxon 1:14:57
yeah, I suppose some might say was a bit maybe A bit quick, but it really did feel right. And I actually proposed probably about a month or two before I got divorced.

Scott Benner 1:15:07
There you go, stack up, stack them up, stack them in line.

Saxon 1:15:11
I know, I know, it sounds a bit crazy. But then, at the time I've had other aside, this is actually how will things I think should have felt. And in the marriage I had before. Okay, well, that's excellent. Yeah. You move on to you learn.

Scott Benner 1:15:26
That's excellent. All right. Hey, man, I really appreciate you doing this. I, I, I found your job to be fascinating. And I hope more people reach out to do things that, you know, maybe the rest of us don't know about. I was really, at one point stunned when you said that you learn about things around the world from this podcast. So hopefully, you will have taught somebody else something today.

Saxon 1:15:48
Well, maybe I mean, I think I mean, going back through your older episodes, and hearing the woman who had her daughter went to went up Everest, and then there was an avalanche and stuff like that. It's there just conversations that you would never otherwise get to listen into. Yeah, you know, it's brilliant. I will say, when I first found your podcast, I looked back to see if there was anything to apply to say the job I'm doing. And I was very disappointed when I listened through the episode just keep on trucking, and that it had absolutely nothing to do with trucking. And then, obviously, over the over the time, I've learned that your titles don't seem to have anything to do with what's happening. Apart from obviously, that the after dark episodes, I have to say, are fantastic that they give me an insight into a lot of things that I would otherwise have no contact with, or insight. So I think they're brilliant. And you should definitely keep doing those for people.

Scott Benner 1:16:43
I very, I enjoyed doing them very much actually. And I've had actually, just last night on social media, the girl who came on and talked about being diagnosed during a heroin Bender, like was like, she was just right in front of me on social media. And I thought she looks so good. And I just made me happy. You know, she looked like she was doing so well. And I agree. Like there are stories where you're just like, I don't know anything about this world. And it's it's fascinating to hear more about it. I actually think this I mean, yours is not an after dark, but it's a very similar situation like we don't think about, you know, truck drivers. It's a tough job. It's, it's incredibly important. And I don't think you know, I don't think anybody even like they look right through it, they don't even see it. So, I mean, between that and the girl that was a stripper from a few episodes ago. I find that all really fascinating. And I'm sorry about the titles of the show. I don't know what to do like today's today's Today's episode is called Chile, Chacho. And I believe that I don't even believe those two words actually go together. I didn't even care. Okay. It's just at some point in the conversation. The woman I was talking to was like, I think her cat's name is Chacho. And she, and she was from Chile. And she's just like, you know, explain to me what the word means and everything. And I was just gonna call the episode, Chacho. And I was putting it up and I thought, huh, what if I put Chile with it? So that's fine. I'm doing that. So it's a, you know, woman's got a cat. What do you want for me? And by the way, the cat has nothing to do with the story section. Not at all.

Saxon 1:18:27
Like, I've listened to enough of your episodes to believe you.

Scott Benner 1:18:30
Thank you. I think she mentioned the cat for eight seconds and an hour and 15 minute conversation. But I don't know what yeah, what am I gonna call it? You know what I mean? Like, I really do believe that if you give the titles, too much specificity, that it's unfair to the episode The episodes not about this one thing and then I get fearful that someone will come along and say, Oh, I don't need this and they'll gonna miss out on the other 15 You know, discussions that happened inside of the hour just because they thought oh, this is about

Saxon 1:19:04
I don't know. Oh, you know, Yeah, cuz otherwise would be every episode would be cool. diabetes wouldn't.

Scott Benner 1:19:08
Yeah, what Yeah, I What would I do? You don't I mean, that's. Anyway, I appreciate that. You appreciate it. Thank you very much.

Saxon 1:19:16
That's all good. Yeah, thank you, of course.

Scott Benner 1:19:29
A huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGLUC AG o n.com. Forward slash juice box. And I'd also like to thank Ian pen from Medtronic diabetes and remind you to go to in pen today.com I'm to get started right now with the ink pen I hope you enjoyed my conversation with Saxon I'll be back very soon with another episode of The Juicebox Podcast

#764 Make It Happen

Irene is the mother of a child with type 1 diabetes.

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#763 Bold Beginnings: Community

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Test your knowledge of episode 763

1. How should blood sugar levels be monitored in relation to exercise?

2. How should low blood sugar episodes during exercise be handled?

3. What is the impact of stress on blood sugar levels?

4. How should insulin doses be adjusted based on physical activity?

5. Which types of exercises are beneficial for diabetes management?

6. What is the role of consistent physical activity in long-term diabetes management?

7. How should one prepare for exercise to avoid blood sugar fluctuations?

8. What are the benefits of incorporating different types of physical activities, such as aerobic and anaerobic exercises?

#762 Artic Driver

Saxon is a UK based truck driver with type 1 diabetes.

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