#1911 Two Mirrors Part 1
Two Mirrors Part 1
Part one. An RN mom hasn’t slept in nearly two years — her daughter’s needle phobia, anxiety, and lows run the house. Scott hears it all, then offers the advice.
Jump to a moment
- The signs were there on the drive to Maine — the downed frappuccino, the desperate bathroom stops, the midnight thirst — and Amy, an RN, “knew it, but didn’t know it.” The diagnosis call came at a red light, on the car speakers, with Emily in the back seat.
- Emily may be the one kid who should never have gotten a disease built around needles — she was already in needle-exposure therapy before type 1 arrived. Four hours to change a Dexcom in the early months; nearly two years later, she’s still on MDI with a Tandem Mobi finally in the mail.
- Caregiver burnout is the real subject of this episode. Amy has woken every two hours for nearly two years — “I need a four-hour nap and a bottle of tequila” — and only one person on earth is allowed to babysit.
- The family history runs deep: Amy’s mom was diagnosed with type 1 at 40, her grandfather in his sixties, and Amy and her mom both have Hashimoto’s. Her nephew’s unexplained lows prompt a live look at whether lows can precede a type 1 diagnosis (sometimes, rarely).
- Scott’s reframe: people who live with diabetes long enough stop flinching — like people who live where rockets fly overhead. Part one ends mid-sentence as Scott asks, “Can I give you the advice?” The advice is part two.
- Part Two — JBP #1912 — The conclusion — Scott's advice, the two-mirrors talk, and the thyroid checklist
- Tandem Mobi — The pump Emily is about to start; sponsor link
- Juicebox Podcast Facebook Group — Community around type 1 (verify URL)
Every word of the conversation
Welcome0:00
Hello, friends, and welcome back to another episode of the Juice Box podcast. My diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control. I'm joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down complex concepts into simple, actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, or you can listen to it at juiceboxpodcast.com by going up into the menu.
Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. Today's episode of the juice box podcast is sponsored by the Kontoor Next Gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at Kontoor Next dot com slash juice box.
Today's podcast episode is sponsored by MiniMed, the innovators behind the MiniMed Flex system, a small, sleek, and discreet insulin automated delivery system controlled from an app. Nothing comes close to freedom you can feel. To learn more, visit minimed.com/juicebox.
Meet Amy — Ohio by Way of Everywhere1:49
My name is Amy. I currently live in a suburb of Cleveland, Ohio. I have two kids. One's my t one d and my husband, and we have a German shepherd named London.
I see London. I see France. I see Amy Yes.
On the podcast.
Also, every time someone says Ohio, I just think of that Drew Carey show.
Well, my husband is originally from here. I am not. So there seems to be awful a lot of jokes about Ohio for some reason, and I I don't know whether to join in on the jokes or not to defend my husband, but it's so funny. So I don't know.
Well well, there is a for people who don't remember television, there was a a a sitcom with Drew Carey. I believe it was called I I don't know how they came up with this title. I I believe it was called the Drew Carey Show. And, there was a song, and I don't know any of the song. Like, I couldn't sing it for you now if you paid me money.
All I know is that the last line of the song, someone just goes, Ohio. And I think it, like, and I think it echoes. And that's what I think of every time. So That's
so funny.
Nevertheless, I'm sorry that someone drug you there if you didn't wanna go.
No. Well, it's one of those things where it's such a nice it's a great place to raise kids, but there's, like it's a you know, it's
Now what?
It's like well, it's like it's you know? So I'm from Massachusetts. I was raised on the very Southern West Coastal Maine coastline.
Okay.
And we had the beach. We had mountains. We had Boston. And, you know, you go to Boston, it's like Harvard and and all the, you know, Tufts and all these things, and it's just you're surrounded by, like, education and some of the, in my opinion, best sports teams in the country.
Well, I mean, you're wrong about the sports thing, but the other stuff I'm in, I I I do I do understand what you're saying.
You know? But, and then, you know, it's just so funny. And then you come here, and it's great. There's nothing, like, wrong with it, but it's just like
Is it so from your this is interesting. May I before we get started, I I recently went to Tennessee to look at a a house. And and everyone who's from here says, you're gonna move to Tennessee? And I'm like I I said maybe. And they're like, well, then you'd be in Tennessee.
And I was like, yeah. I think it's really pretty, and there's, like, mountains, and it's, like, I found I found that it was, like, in the middle of nowhere, but, like, very close to something else. And, you know, and I thought but but then this this thing came to me. I I work a lot, and so does my wife. Right?
And we're probably gonna work for ten more years. And so I told I I said to them, I honestly think that on the if you pick the right day of the week, you could pick my house up. If you could magically lift my house up and put it somewhere else, I might not know that I'm not in New Jersey for days. Right. I was like, so what's the difference?
Right. Very
fair. Very fair.
At the end of the day, when I do make it outside for a half an hour, what if I looked up and there was a mountain there and my neighbor wasn't right next to me? Like, what if that happened?
Yes.
I don't know.
We we lived in South Carolina, actually, in Greenville for a year. My son was born there. And so we were very close to Tennessee, and we would go. And you could go to, like, Gattenberg and Pigeon Forge and Nashville. It's great.
Like, I highly recommend Tennessee because I just think it's so beautiful. Thank you. You know, we lived in Manhattan too, so I was very close to New Jersey at one point. So I no offense, but that's a bit busy for me.
It's it's getting busy for me too. Okay? And and I think that's a a function of my age. If we get to a chance later, I will tell you how that right before I did this, I was in the driveway of my house on my phone, ranting at the person who's supposed to pick up my recycling in a way that made me think, I gotta I gotta get out of here. It was like was anyway Yeah.
Let's find out a little bit about you guys now. So Sounds good. Husband, dog, kids, Ohio. How many kids again?
We have two.
Two. And the ages?
So my t one d daughter is 12, and, she turned 12 in March. And my son is eight, and he turned, eight. So he's, like, eight and a half. How
old are you?
I am old. I am 40. I just turned 44 in April, and I just hate saying that number.
I am old, you said. I'm 50 I'm 54.
Well, it's funny because a lot of women my age are like, oh, 40 is gonna be awful. When you hit 40, all of this stuff goes wrong. And, you know, in my thirties, was hearing that constantly, and 40 was fine. 41 was fine. 42 was fine.
And I'm like, they're lying. I don't know what you know, I'm running half marathons every year. Like, I'm like, I don't see what the problem is. And then 43 hit, and it was like t one d diagnosis, 43, everything like, my world is just falling apart.
So Wait till you go
into what they call perimenopause.
Well, yes. I'm like, shoot. Now that's next. There's nothing like there's no good coming. It's all downhill from here.
Alright.
Listen. I I like being positive, but you're probably right. So I I I all I know is my wife's downstairs, and if I brought her up here and she started talking right now, I think she'd go on for a while about what's what's wrong. But but
Well, and it's it's funny because I'm an RN too. I don't currently work. But, like, for a long time, I was always the person scheduling what I call, like, the older people test, like, colonoscopies and all these things. And now I'm like, shoot. That's gonna have to be me some soon, and these little young nurses are gonna be scheduling that for me.
Like, when did that turn? I don't I don't like it. I don't understand it, and it's just all terrible.
There's gonna be some 23 year old girl with an ass like a drum who's gonna flip you over one day and be like, oh, I hope this doesn't happen to me.
That's exactly right. Yep. That's my fear. It's happening.
Mhmm. And it's gonna listen. Here's the thing I said to somebody the other day. Getting old is terrible, but it's way better than the alternative. So
I hope so.
Yeah. But we don't know
what it is. Dying.
Andy, the old the the you're like, wait. What if dying's better than the old than being old? Is that what you're saying?
We don't know what we don't know. Right? Like, you know oh, man. That's funny.
I guess that's why at the end, you do see older people who have lived a long time. They just go, it's okay. I can die.
And and Exactly right.
It's best it that is maybe one of the hardest things to understand when you're younger. When you look at a person who's just like, I'm I'm good with going. You're like, no. You can fight. And they're like, meh.
It's alright. I'm good. I've done enough.
Yeah. Exactly. Really interesting.
The Road to Diagnosis Begins8:25
Okay. So how old is your child when when they're diagnosed?
So she was 10 pretty much. It was, like, the end of summer, and her birthday's in March. So Okay. Yeah. 10.
What what so you said you were an RN. So did you please I I'm waiting for somebody to go. I immediately know what it was, and I jumped into action, but but tell me what happened.
So we lived in England, The UK, for, like, six years.
And your husband's a spy, right, or something? What's going
on? Yes.
Okay.
Alright. I can't tell you more, but he definitely spies on peep no. Okay.
And you guys what have you said to me? Massachusetts, South Carolina, Ohio, England, New York City.
And I lived in Hawaii for four years as well. Yes. Alright. But that was pre kids.
I gotta tell you, you are gonna explain this to me at the end of this episode. So okay. So okay. So anyway, you're go ahead. You're doing what now?
Yeah. So my husband's job, he worked in a British pharmaceutical company and and a different company too. So two different companies took us to The UK, total of six years. While we were there, my daughter got very sick, and she it was, like, it was, like, post COVID, but not really. So it was the rules about who was in the hospital with who was tight still, but you could kinda go to a restaurant.
So it was like and UK was different than America in terms of their regulations and stuff. But she was really sick. Both my kids were her cough lingered, and then it, like, turned bad. And so I went to see our private doctor, and he was like, well, here's a prescription, antibiotic, take it if she spikes a fever. And it was, like, twenty four hours later.
I'm like, this isn't going anywhere. I'm gonna just start giving her this antibiotic. Mhmm. And then, like, probably twelve hours later, she was, like, on the couch, not able to eat, not able to drink, not even able to, like, speak because she was just so lethargic. And I was trying to, like, spoon chicken noodle soup into her and, oh, you know, whatever.
And then we brought her to the hospital. They admitted her. She had pneumonia. And so okay. Fine.
So three days, IV antibiotics. We went home. All's fine. But they delayed the treatment in my opinion. And she's always had my dad backstory, my dad died when I was 10 from polycystic kidney disease, and my daughter has had blood protein on and off in her kidneys since she's been two, which was picked up by a very kind teacher at the Primrose School in Greenville, South Carolina, who just thought we had she we thought she had a UTI, but it was it was just, like, a little bit of an infection kind of.
But, anyway, nothing nothing bad enough to fix anything. There's nothing to do. It's like a benign, hematuria is what they call it. So they're functioning fine. They're just not perfect.
Right? So, like, a filter that's just not perfectly filtering. It's no big deal. We got the pneumonia fixed. We're fine.
Couple years go by. We move home just because we're like, that was a scary experience. Like, the health care in The United Kingdom is really difficult and not great. Let's move back to America, so we did. We picked Ohio because my husband was convinced that the housing market was cheaper here.
So we moved to Ohio, and the summer of twenty four, we went to back to London for two weeks to visit. And we landed, and we were doing our thing. And at summer, not a lot of places have air con in them. She was drinking some water, but it literally didn't I did not stand out in any way. We came home back to Ohio.
Four days unpacked, repacked. We drove to Maine. And on our because that's we do a summer holiday there for about two weeks every year.
Warning Signs on the Drive to Maine12:08
Okay.
And on the drive to Maine, we stopped at a rest area, filled up with gas. There was a Starbucks. She downed a frappuccino in, like, ten seconds, and my son was barely sipping it. And he had never had one before. In The UK, we didn't really have Starbucks very frequent.
So I was like but she loves sugar and, like, sweet stuff. And I'm like, oh, that Emily. Like, now you're gonna get sick. Right? So she had peed twice while we were there, and I just thought, well, maybe like, come on.
You just you're just drinking too much. Like, this is silly. You're just downing this stuff. It's gross. We get back in the car.
We're on 90 heading east, and they shut the highway down because of a massive car accident. They're trying to land a helicopter. So they funnel everybody off on these back roads in Pennsylvania for to pass, like, two exits. And during that time, it was bumper to bumper for probably an hour, and she started having to pee. And she has had to go so bad that she was, like, crying about it.
And I was getting mad because I was like, you're making this drive difficult on purpose. You're back there just doing whatever, you know, drinking because you're bored and whatever.
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'I Knew It, but I Didn't Know It'14:51
So we finally get to a rest area. It it got so bad, though. I thought about asking, like, a random house, knocking on a door, and being like, can my daughter pee? But that's weird. So we didn't do it.
Found a bathroom somewhere, got her settled, got back in the car, got to Maine. The end of the two weeks comes, and she came up in the middle of the night and was like, I'm thirsty, and I have to pee. And the whole two weeks, they had been complaining about the location of their bedroom in this rental property that we had. And so they're a little bit bougie. They're used to Ohio where we have air conditioning in the house.
A lot of main houses don't have air conditioning. It was a hot night, and I'm just like, whatever. You're just being difficult. Go to that. It happened this second night, and that was the last night of the trip.
We're on the coast of Maine. There's no children's hospital with it's, like, forty five minutes north to Portland to the Barbara Bush Hospital or forty five minutes south to Boston. And I was like but I didn't I knew it, but I didn't know it. And I was like, nope. Nope.
Nope. Like, this is not it. We're fine.
She's just a pain.
She's just a pain in the ass. Like, whatever. I can't even handle you. You're just ruining my sleep on my vacation. Right?
Like, so I'm just annoyed. And so we pack the next day. We're driving home, and I'm emailing her nephrologist who we just have annual well checks with.
Right.
So I'm like, listen. I don't know, but I need you to run all these tests. And she's like, okay. Fine. Because we had an appointment with her probably three days later when we got back in Ohio.
Okay.
She's like, fine. No big deal. So blood work. There's a whole another story with needle therapy exposure for Emily because my daughter because she is just terrified of needles. So this was a we had, like, eight people holding her down.
We got the blood work. I expected to be wrong. Like, I was just praying I was wrong. We went to Dillard's, which is a local department store to do some back to school school shopping, And we were driving out at a red light. It turns green.
The Phone Call at a Red Light17:05
My phone rings. It's a local Ohio number. I didn't really even dawn on me who this could be, so I pressed okay on my car. So it's over the speakers, so there's no way of hiding it. And my doctor's on the phone, and she's like, your daughter has type one diabetes.
I need you to get to the emergency room right now. And I just was like and she's in the back seat, and the light screen, there's people behind me. The cars in front of me have gone. I can't pull over. She's, like, thinking she's going to die immediately because she doesn't know what this means.
Yeah. Yeah.
I'm like, oh my god. Like, I don't even know. So I pull over as fast as I can. The doctor's trying to calm her down through the speakers of the car. I you know, I'm just like, oh my goodness.
So we race home, pack a bag, tell my husband, and the four of us drive to the local hospital where the sweetest, kindest, loveliest peds endo is on call waiting for us to arrive. So we get there, and we are admitted for two nights, three days. Yeah. And then
That's it.
Here we are, diabetics. Yep.
Wow. Jeez. That's something else. Was a lot. Yeah.
No. I I imagine. And and did you get to go to Dillard's? Did you do the shopping or no?
Yeah. We did the shopping. It was a great mother daughter day. Like, everything was good. You know, she didn't it wasn't like drinking every day like crazy and peeing every day like crazy.
So I thought, you know, maybe it was just a fluke.
Yeah.
Maybe it was a flu. Maybe it was a little sickness. Maybe it was exhaust heat exhaustion because we go to the beach every day, all day in Maine, and it can get warm. And Right. You know, you're tired.
You're not getting sleep. You're not in your house. We don't have air con like, whatever. It could be a million things.
Why? I asked about Dillard's not because I cared about the shopping, but I was trying to figure out if she if she was, like, you know, how she was feeling. This sounds like she was doing okay that day. I
gotcha. Great. Yeah. Oh, she was walking the little runway within the dressing room, like, trying things on, and Yeah. We had a great we had a great morning.
So
I I like when you say I I have to tell you what. I don't I I'm not going I'm not vacationing anywhere warm without air conditioning, and I don't think of that as bougie at all. I don't think I think of that as fair necessity. But
So funny. Well, we grew up as kids in Maine, and we never had it. You would open the windows, and you'd have a little ocean breeze, and you were fine.
Yeah. But as we went over earlier, Amy, you're old, So that's a different one.
That's exactly right. Yes. The world the climate has changed.
Right? Listen. We we, grew up I don't know if I've ever really talked about this before or not, but I grew up in a rented house.
Okay.
That, was rented to my family by a church. So the church had a parsonage. A parsonage is a place where usually your your pastor lives. And, they were renting it because the pastor had his own house. So I I grew up in a three story home that I didn't belong in.
Like, we couldn't we couldn't actually afford. Okay? But I think I as I look back now in hindsight, I think the church was trying to be nice to my family and everything. I I I see now that I was on some sort of welfare that I didn't understand. But but that but neither here nor there.
We did not that house did not have air conditioning. Mhmm. And we didn't have what you might call money. So, my parents eventually, like, scraped up enough to buy one air conditioner that went to a window. Mhmm.
And what we did was is we basically figured out what the largest room in the house was that we could afford an air conditioner that would fit in, and then we put it there, which ended up being the living room slash dining room.
Okay.
Now the problem is is that there was a doorway into the kitchen, and it didn't have a door on it. But we the the air conditioner wasn't strong enough to actually air condition the kitchen too. So we had to hang sheets over doors to keep the cold air in the space, and then all summer long, we all slept in the Yeah. In in that room. Right?
And I'm gonna tell you right now, I can physically feel right now pulling the curtain aside and walking into the kitchen.
Oh. Like like, how
just wave.
Yeah. That exactly. Just, like, hit in the face of this horrible heat. You know? You tell me to sleep in that now, and I'll say, no.
Thank you. I've I've ascended I've ascended beyond this. I'm not doing this anymore.
So So funny. Well, the houses in England don't don't have air conditioning, really. And so why
we all left.
Yes. Yes. That's the only reason. And we like, the ups they're built so well, and, like, the upstairs just is stifling in the summer. And they don't have screens on the window either.
So you can't open the screens at night because bugs come in, and you can't not open the window because there's no air con. So I don't know how people survive.
Heathens.
Like, because Yeah.
Yeah. No. I understand.
It's awful. It's awful.
I listen. I vacationed in Vermont once.
Oh. And I listen
to that noise she knows already. And so, like so I'm living in society here where where, you know, people live in civilization. I never imagined there wouldn't be an air conditioner at the house that I rented. And Yep. My wife arrived earlier.
Arden and Kelly went ahead because Cole and I were in a baseball tournament. And so she we're now driving to Vermont. She's there. And I remember Arden, this little girl. She calls.
She goes, hey. Mom called and said this house doesn't have mom said this house doesn't have air conditioning. And I went, it's a house. Of course, it has air conditioning. She goes, no.
This house does not have air conditioning. Everyone was mad at me for a full week. I just want you mad.
No. They need a redo on their vacation.
I've never slept so close to a fan before in my entire life.
That's so funny. Anyway Welcome to New England. Yeah.
Pull pull it together, Vermont. Terrible. Yeah.
But so
They're all eating Ben and Jerry's. They don't know it either. Well, I mean, we did
the Ben and Jerry's tour. It was nice.
Yeah. Yeah. Absolutely.
Well, So so impact on you, rest of your family, then I wanna hear about your daughter. But, like, is it I mean, obviously, it's shocking, but how do you how do you process it?
Processing It — an RN and a Mom23:02
Oh my gosh. It was awful. Like, I was just in the hospital, and I'm as I'm watching things from a medical side because I'm an RN, and I'm also trying to be her mom, and she is terrified. And, like, the anxiousness, the apprehensive like, I don't need there's no word that could even describe how anxious my poor daughter is. And before this, ironically, the probably eight months leading up to it, she had the flu shot the fall before, and our pediatrician was like, her reaction to getting a shot is not okay.
Like, she needs to see a therapist. So we went and we saw a therapist who she hated to see, but he was sweet as can be. And he did needle exposure therapy. So he brought in insulin syringes, like the old school kind, to just let her touch and feel and, like, you know, and he actually let her poke him with one and to to just try to get over, like, this irrational fear. Does it help him?
No. It didn't. And it was just miserable. And then we go on these trips and we get diagnosed, and I have to call him and be like, listen. Like, randomly, the one kid in the world who should not have a disease that's based around needles just got diagnosed with type one.
And he was like, what?
Like, this is so random. That that's that's like a
well, listen. We you know, Arden is a has a fairly heavy needle phobia too. So and I I know what she's tried a couple of different things, and so far, none of it really helps.
So Yeah. Yeah. I mean, it's like for blood draws, we have to go downtown. They have to bring in the child life specialist. They have a dog.
They have, like, you know, a gift toy shop, like, whatever. You know, we have to bribe her with whatever it is she want. Like, it's it's awful. It is awful.
But I should say that recently, Arden had to get a blood draw, and she went by herself.
Oh, okay.
And, like, there's definitely part of me that when she came back, I was like, there there's a coin flips chance she's gonna walk in the door and go, well, I didn't do that. And so, but she did. I was really proud of her. So
Yeah. Yeah. That's huge. That's huge. Yeah.
So I had swollen eyes. Like, I was in I was walking around the hospital with sunglasses on my face because my eyes were so swollen from just crying Mhmm. The whole time. And my so my mom has type one, but she didn't get diagnosed until she was 40 when my dad passed away, like, the same year they think it was stress. Her dad had it, but he didn't get diagnosed until he was in the sixties.
And they both were like, no. It's type two, but it wasn't. Like, the doctors were wrong.
Family History — Type 1, Hashimoto's, and Anxiety25:45
Was Amy, your grandfather was diagnosed with type one in his sixties. Your mom in her forties, and your dad had polycystic kidney disease? Yeah. What do you have? You have you definitely have hypothyroidism.
Right?
You're correct. I have Hashimoto's.
Yeah.
My mom has Hashimoto's. And, actually, I got Hashimoto's, like, my fourth month of being pregnant with Emily Mhmm. With my daughter.
Yes. And Emily's anxious, you said too.
Oh, to like, that doesn't even come close. That's the closest word I can figure out to describe her, but it's awful.
A cat in a room full of rocking chairs kind of thing?
Yep. Yep. Like, four hours to change a Dexcom for the first six months of our diagnosis. Like, four hours to put one on and never mind taking the old one off.
I know. Ardent's good. Like, I just wanted to
drink fast. I'm like, I mean, we have done this 800,000 times.
Yes. Yeah. Yeah. So Yes.
Well, what wait. Wait. What what else is so if you listen, you know, like, I I don't imagine that anxiety is autoimmune, but I do think it's inflammation related to some degree. Yeah. And I also think that I and I'll say this over and over again if I have to, but I've interviewed nearly 2,000 people now.
And I think that if I left the type one community and interviewed 2,000 more people, I would not hear this much anxiety from people. Like so I think it's all kind of interconnected somehow. What else is going on? Anybody got celiac?
Not that we know of. No. Not that we know of. No. I don't
Nobody nervous belly? Nobody's running to the bathroom all the time?
Not that I know of. Okay. So I I can get that sometimes, like, when I ran and stuff like that, but I don't know. Like, it's not bad enough where it's like a thing, but it's sometimes. So Mhmm.
I think it's just two Hashimoto's and
the type one. Ones. Well, now three three three type ones now. Yeah. Yeah.
Yeah. How about your husband's side? Anything going on over there besides thinking that the the real estate in Ohio is the way to make a decision?
Mental ill no. I'm joking. So he had, he had anxious he was very anxious in college. Like, almost like panic attacks, but not really. Okay.
But that's it. I don't think they have
his dad. How did
you find each other? High in a therapist's office? What was going on?
We he worked actually for a pharmaceutical company, and he was living in Connecticut when I was living in the New England area. We just met through mutual friends. But
Okay.
Yeah. They
were like, hey. I think if we put you guys together, you'll have a really anxious kid. And so
But I've never been an anxious person. Like, I mean Okay. I lived in Hawaii. I was just chill. I was very relaxed.
Like, my whole life, I feel like I wasn't an anxious person. I was just about having fun and Mhmm.
How about you?
Never. And
Do you have any siblings? Or
I have three sisters. Yep. My oldest one is my dad's child only, so she's my half sister. She has a lot of, like, urinary issues, like UTI chronic UTIs. Mhmm.
They all have had ironically, they have all had blood and proteins in their urine, I believe. I know blood. I'm I'm pretty sure about proteins more than I have. And so when I was pregnant, the doctors were all over my kidneys, and there was never anything wrong.
Yeah.
So I felt like I was skipping that, but I take after my dad more than my mom. Like, my looks, my height, my colors, like, all the things. Mhmm. And those girls the other my full two sisters take after my mom's side more. And, honestly, I just thought if anyone gets anything, it's gonna be those kid the my sister's kids because they kind of resemble her more.
Oh. But I just feel like we got, you know
But
slammed with it.
Any autoimmune with the with your sisters or anything else with them?
Her Nephew's Lows — Can Lows Come Before Type 1?29:44
Not that we know of. My youngest nephew who is, what, five maybe, he recently in the past six months I don't know too too much about it because they're not sure what's going on yet, but he will get super cranky, super, like like, just hangry until he has a snack. And so they are keep checking his blood sugars. And then I went online, and I don't know if it was within your Facebook group or just t one b d parents or something, but somebody actually posted about my kid having a low blood sugar for a very long time, and then they got type one diabetes. Yeah.
And I don't know if that's, like, a thing.
Or It it it is. Like, sometimes sometimes people get low before they get diagnosed.
Yes. Yeah. And he, like, needs a snack, like or he's freaking out apparently. I don't know that's,
I don't
know if that's the the actually, we should figure that out. While I'm figuring that out, let me read this real quickly for people. Polycystic kidney disease or PKD is a genetic kidney disorder where many fluid filled cysts grow in the kidneys. Over time, those cysts can make the kidneys larger, damage normal kidney tissue, raise blood pressure, and sometimes lead to kidney failure. So plainly, the kidneys slowly get crowded by cysts, and the crowding can make them work worse.
Yeah. Common things connected to PKD could be high blood pressure, backside or belly pain, blood in the urine, kidney stones or infection, cysts in the liver, gradual loss of kidney function. Let's ask the question. Why wait. Wait.
Hold on. Is there a medical reason that someone who will one day get type one diabetes would experience low blood sugars. Is that not I think I did that. Right? Yeah.
Let's see let's see what today I'm using ChatGPT. I would have used another one, if it was open, but I was using I was using this one to make images for the website, so it's open on my browser. I look forward to your emails telling me not to use ChatGPT to make images. I can't wait to delete them. Let's see.
Yes. It can happen, but it's not a common pattern. Well, it seems common when I'm talking to people. Erratic insulin release from stressed beta cells, insulin antibodies, autoimmune hypoglycemia, reactive hypoglycemia that is unrelated to future type one. So it okay.
So the three things that it highlighted was in early autoimmune diabetes, the pancreas may still make insulin, but not smoothly. Some research has described post meal reactive lows before overt type one diabetes, possibly from delayed or excessive insulin release. There are published case reports and small studies showing hypoglycemia before insulin treatment in a minority of people later diagnosed with type one. One study found that six of eighty seven people or six point nine percent. Insulin autoantibodies, autoimmune hypoglycemia, rarely the same autoimmune process around type one can involve insulin autoantibodies that mess with the insulin availability and cause lows.
This is uncommon but documented. And then reactive hypoglycemia that is unrelated to future type one. This is probably the more common explanation. People without type without diabetes can get shaky, sweaty, weak, anxious, hungry, or foggy a few hours after eating, especially after high carb meals. The Mayo Clinic notes that reactive hypoglycemia in people without diabetes often has unclear causes but can relate to meals, alcohol, gastric surgery, inherited metabolic conditions, or rare tumors.
Wow. Life. So much fun. So you're
So much.
And and yeah. Good time. Like you said earlier, like, I said, you know, it could be worse. You could be dead, you went
that case, I mean, you know.
Two Years In — Still MDI, a Moby in the Mail33:34
So so
okay. So I think we understand the background of of, you know, your family. So I I guess I would like to dig in for a second. She's diagnosed. She has a terrible needle phobia.
Yeah. And so how does she handle the diagnosis, and how do you get through this? Because now it's what? Three and a half years later, did you say?
We're it'll be two years this August. Two years. So we're not yeah. We're still we're still kind of in the fog. So she's I when she was first in the hospital, she had been in the hospital for the pneumonia in England, and she had the IV, and that was awful.
But that was it. Like, there wasn't multiple sticks and all that kind of thing, obviously.
Mhmm.
This one, you know, just involved waking us up all the time for the finger sticks and all the things. And I just think she thought, like, that would end. Like, there would be that's just while we're here in the hospital, and then we go home, and that's not like that. We have a restaurant called the Yard House that we go to every Friday. It's, like, five minutes from our house, and it's just our Friday family thing to do.
And I remember telling the doc like, on the rounds, I went out because I was so interested in what they were saying, the RN part of me. And I stood there in rounds, and I was like, listen. We're out of here by 03:00 today. Like, I'm done. I can't do this anymore.
So whatever you need to do to discharge us by three, we are going to the yard house tonight. It is Friday. We are out of here. Like, I'm done.
Mhmm.
And I just remember getting to the yard house and being like, I have no idea what the fuck I'm doing. Like, am I going to keep her alive? What is a french fry? I don't know. I have zero clue.
You know?
Everyone were leaving the yard house immediately. Everybody
out. Yes.
The Yes. Poor kid was starving, and I just was like you know, in the hospital, they just try to teach you so many things at once, but also super basic stuff. Like, you can eat meat and cheese. There's no snacks. This is what you do for breakfast.
This is what you do for lunch. This is what you do for dinner. So I was like, this kid can't have a snack ever? Like and I remember my nutritionist, like, two days after diagnosis being like, no. That's not true.
And I was like, oh, thank god. Like, you know, because I don't know what I don't know.
We want 20 dozen eggs and 35 pounds of bacon. We we yeah.
Oh, and she's gonna die now of clogged arteries at, you know, 12. Like, I
don't know. News. Her blood sugar's terrific.
Her her
cholesterol is not looking good at all. Oh,
And then sodium, you know, so then her kidneys start failing. You're just like, damn it, man. Can it wasn't
the really does go through your mind in those two days.
Oh, a 100%. You know? And, you know, and and I haven't slept. I honestly I I feel like I she's still MDI, and we're just, like, two days ago received Tandem Moby in the mail, and we haven't received the the supplies with it. And we're waiting for our training, but this is the first time in almost twenty four months that she's even been like, well, maybe I could potentially let's see.
Try this. Maybe. She could
make run from the needles even though she hates them?
Anything new is so scary to her. Like and not even necessarily diabetes related. Like, if I was, like, try softball. She'd be like, oh, I don't know. You know, like, it's just
Mom, softball.
My god. You know what's gonna go wrong.
Right? Yes. Yep. So anything new. So it's like that was what we were doing.
She couldn't deviate from that.
Aw. Boy, a poor kid.
That's terrible.
Running on No Sleep36:57
It's awful. And I haven't slept in, you know, twenty two one months. And, like, literally, every two it's worse than a newborn. I am up every two hours all night, and my sweet husband, he'll sleep through the night. He travels a lot for work, so I'm I don't work currently.
I'm the primary caregiver for the children. So he gets restful nights when he's away, and he gets restful nights when he's home because he has to work. Like, on the weekends, we take turns and stuff, but I'm like, you know what? Monday through Thursday, like, this is all it's fine. I can try to rest during the day, whatever.
And he'll be like, just take ten minute power naps. And I'm like, for someone who gets consecutive sleep, a ten minute power nap might work. But when you're sleep deprived of that deep restorative restful sleep
Amy, it's
like ten
minute nap. Nap. Fuck you. Okay? Literally,
this is what I wanna say. I need a four hour fucking nap and a bottle of tequila.
About three months, and you all try to stay alive till I get back.
Yes. Yes. And I don't know if it's because I'm mom or and an RN or both or one or whatever it is, but she, for the first, I would say thirteen, fourteen months, wouldn't let anybody touch her but me.
Yeah.
So if it was like, I couldn't even see couldn't even be like, Amy, I got this. Like, you rest tonight, because she would have a massive panic attack because daddy was trying to fix it. And bless her heart, one night, I did go forty five minute away to a mom's night out. It's a diabetic conference thing for parents of t one d.
Sounds fun. Yes.
And it was forty five minutes away, and I got a call during the dinner service at, like, 07:30. She's like, mom, I'm going low. Daddy just gave me a sugar free juice. And I was like, oh my god. This is this is why I can't leave home.
He's like 13
year old's on the phone going, hey. This idiot you married is trying to kill me over here. Okay? Yeah. So
Yeah. Yeah. And my son, who's seven or I think six at the time, he's like yeah. I can hear him in the background. Like, don't worry, mom.
I gave her a regular juice with Sesame Street on it because that's the kind we buy is the little ones with the Sesame Street
on it. So Amy's out going My seven years, they have only one holding this together right now.
Like, I'm not this is so not you're not wrong. Like, there's times, and I'm like, oh my god. This is true. Like, he knows more. I think, in honest opinion, he would know more about pediatric type one diabetes than the average adult ER physician.
I'm not even like, I honestly believe this whole heart.
Yeah. Yeah. Well, it's just sad on its own, by the way. So Oh,
that's awful.
So okay. I think I understand the bigger picture here. And and and so now completely serious, you know you can't keep doing this for much longer. Right?
I honestly feel like I told I I I have had moments where I've just melted down and and, like, you know, screamed at everybody because I don't feel like they quite understand that if mom dies of sleep deprivation, like, or cancer because I haven't slept or sick, whatever, like, my car into a tree because I fell asleep driving, like, I'm not gonna be here to take care of you anyway.
So, like, if I don't I go, we all have to go together. Okay? Because I'm I'm looking up. Like, maybe he could do okay without the kids, but I think with the kids, it's not gonna go well. Maybe maybe just give the seven year old a couple of grand and let him go farrow and see what happens.
You you know?
I used to I used to be in the philosophy of we all fly on a separate plane because, you know but now I'm like, no. We're all together in this one, guys. Hop aboard because if it goes down, at
least is what we need. We need to all go if we're gonna go. You're you're you're in the the crazy, like, you're, like, crazy lady on the news, like, level right now. Well, what happened? I just they can't live without me.
I'm like, they probably would be fine. So so but seriously, they probably would be fine. So, like, you're like, you know what I mean? Like, what do you honestly, they'd pull it together. Right?
Well, you know, I I do think in the I think my husband has been you know, she has, you know, made him feel awful enough for that one night that he's really learned to, like, look at what he's giving her for a low snack. But I just think she is it's a 100% nothing to do with him. He's great, but it's just her personality. And it's just her changing it up from something. And mom's always there.
Mom's you know, I I my body will literally wake up, and then the next change on the Dexcom, it'll hit a low. And I'll be like, my it's just like something in my body.
Why So Many Lows?41:30
Why is she getting low so much?
It's so weird because, you know, I've listened to you a lot, and I'm like, what what am I doing wrong? But she like, I'll do the same thing, the same time, the same food, the same activity, and one night she's 200 plus overnight, and I'm waking up every three hours to give a correction and whatever. And then the next night, you know, I give the same correction right before bed, and she's dropping, you know,
I have night the
Moby's gonna fix a lot of this for you.
I praise God. Like, if they if if it does, I will find the creator of that pump and give them a big old kiss because I'm like, I need someone to come save my life right now. Like, this is but my my anxiety in all of this is there have been plenty of times that the g seven is so off that I am terrified of it being like, oh, she's one eighty, and Moby's like, okay. Here's some insulin, and she's 40. You know?
And I think telling me there are
times that her blood sugar says one eighty, but she's 40?
There's been times the g seven has been a 100 points off. Yes.
But but like that? Or
Yeah. Like yeah. Yeah. Yeah. So one time it was I was checking her, she's and like, mom, I just don't feel right.
And then her actual finger prick wasn't 40. That's an exaggeration. But it was, I think it was, like, 62 or something. And the Dexcom was, like, one fifty or, you know, something you wouldn't have even, like, almost to the point where you're like, you're fine. Like, I don't
know what you're bitching about. You know? But, like, then she's not. She's well hydrated.
Most days, you know, there could be a day at school or something like that where she's not, but I do try to make sure that, you know, she's drinking well enough. I do try to make sure it's in the right spot. I do it's not a compression low. You know, like, with the Dexcom's low and she's not like, all the things, you just but it's like she's standing she put her left foot forward, and the wind's blowing north today. Like, I don't know.
Like, what is the there's nothing that I can think about that changes. You know? You
are in desperate need of a step back.
I am desperate need of, like and we used to have such a good life. Like, for six years, we lived in
You got a good white lady thing going on. I heard it. Yeah. Yeah.
Yeah. Traveled to Italy. We went up on the weekend. You know, we were like, let's go to Rome. Why not?
Let's drive to France, Belgium. Let's do it. You know? Like and believe
doing me that anymore?
No. We live in America, which it's like, where are we gonna go? Michigan? I'd rather not.
You know?
A lot of people listen from Michigan. I love Michigan. I just wanna say that out loud. There's nothing wrong with Also Ohio.
Wrong with Michigan. Yeah.
Well say.
There's nothing wrong with Michigan, but it's not Rome, Italy is my point. You know what I mean? Like, it's not
I hear you. Okay. Well, I mean, I think even the people of Michigan would say that.
This is it. Yeah.
This is it. That's my point. Yes.
'We Used to Have a Good Life'44:28
So yeah. So but but but wait. Let's let's let's slow down for a minute, Amy. Are you so you said you're anxious too.
Well, I'm anxious about the fact that if I do something wrong, she's dead, and you're supposed to take care of your children. Right? So you're supposed to protect them, and you're supposed to provide
them all and You're not gonna kill her. It's fine.
I'm just
You gotta let go of that.
Ugh, man. And it's like, you know, everything has just become so complicated in life. Like, we've flown. We were in Hawaii in April. You know, we go on a holiday every every summer school break, and the amount of crap we went to Connecticut for two days because we're supposed to move for my husband's job now, and Connecticut was the first option.
So we went and being from New England, I was so excited, and we got there. And I'm not like we lived in Westchester County for a little while too, and it's right on that purchase, like, New Cannon line or whatever. And we were there for two days, and everything went wrong. The Dexcom went failed. The second the one I brought for we were there again for two nights, so I brought one extra because the one she had on was supposed to last.
We were in, like, day two or something. It failed. The one I brought, the wire stuck through the hole. Then we spent, like, two hours at CVS trying to get another one, and then that one failed. And then I had to get a third it's like you know, it was just
like Amy Amy, is it possible you're the problem?
No. You never fail on me. They never fail on me.
I just know.
String of them right there.
It was it was a weird thing. And there is there is a girl, and she's posted on her Instagram that she has a theory. Marley, you know, Bane, like that little Yeah.
She's lovely.
She she at one point said if they're made in Malaysia, they tend to have more problems than the ones that don't say Malaysia on the box.
Well, I think the company would tell you I think the company would tell you that's not true, but I don't know. Like, I have no idea. Listen.
You know he does lie, but I saw it, and I was like, oh, she's onto something. Like, all
four of
are from the lantern.
By the way, very well could be. I have no idea. What what I'm saying is that, like, there used to be this, gosh. I wish I could remember the number. There was this theory years ago that one of the codes was a problem.
And and Okay.
And then but you really have to stop and think about this. Like, the the number of those CGMs that are are made and put out into the world Mhmm. Is a massive number. The number of people online is a much, much smaller number.
If Very logical. Yes.
20 of them say, oh, this code is bad, then everyone online goes, everyone's saying it's this code. But Yeah. No one's pinging the other million CGMs that were made this year. And so
Very fair.
Yeah. So, anyway, I don't what I would say is that I don't think that's a good mathematical way to figure it out. I and I'm also not telling you you're wrong because I have absolutely no idea. I would just I would just, you know, say it feels like you got a bad string of them or maybe listen. Maybe a lot of them came out.
A lot l you know, not a lot, but a lot.
The lot.
Yes. Yes. I kept
I could've kept saying a lot over and over again. I wasn't gonna get anywhere. And maybe they came in that area. Like, I have absolutely no idea. Look.
I I Yeah. I'll tell you right now, that goosenecking thing that you talked about. Yeah. When it first came out, I think Arden put three on in a row that did that.
Yes. And it was clearly a
problem, and now it seems to be much less of a problem.
Well and here's the thing. Like, if she was a very chill girl and it's just like, oh, shit. This wire popped through. Let's rip it off and do another one. It would be, like, no big deal.
But it is, like, meltdown. Like, it you know?
Well, I don't wanna I don't wanna undervalue her situation, but I also don't wanna undervalue other people's situations. I think it's a big deal for anybody. I think I think that, like, you know, you don't wanna stop and change a device, And then you No. You do it, and then it doesn't work. You're like, you gotta I gotta do this again.
And then not only do I have to rip it off, poke myself again, but now I gotta call the freaking company and tell them it didn't work so they can send me another one. And then now there's people online going on, but you can do it through your app. I'm like, I know you can do it through app. And then and, like, you know, to be you still gotta go through all that problem, and it is frustrating.
Yeah. And and and there's just
Absolutely is.
Yeah. And there's nothing worse than seeing your daughter or your child so sad and so scared and so upset and so worried. And I think she's worried she's going to die. Like, she will not wake up in the morning
or she will die. From you? I
don't think so because I'm not I've never ever been like, oh, this is this is that. Like, she'll have a trouble.
You just told me you're afraid that if you mess up, she's gonna die.
Well, that's me, but I've never put that on her. Like, when I'm around her, she'll be like, I'm a mom. I don't feel good. I'm having a lot. I'm like, that's alright.
Just sit down. We'll poke your finger. Let's get a juice. Let's figure it out. You know?
Like, a
beer a coffee. You're you're you're Hawaii Amy, one on one yourself. Yeah.
Okay.
You're like, oh, it's gonna be fine. We'll meet a handsome boy. We'll stay in Hawaii forever. Yeah. Yeah.
I right there.
But I think, like, in the back of my head is like, even as an RN, if I was working, I'd be like, okay. I gotta do the five rights here because if I mess up this medication, like, that's that. Like, so it's it's a general, this actually could happen. Am I losing sleep about potentially killing her? That's not the reason I'm losing sleep.
You know? I'm just I always.
Up down. Up down.
In the beginning, I couldn't sleep, and I don't think my body has gotten past that you need to be awake in case something happens. But during the day, I'm not like Can I tell check and follow every ten seconds?
Tell you what really happens is they get older and they become a bigger pain in the ass.
You come you come
less worried. You you come less worried about whether or not people die or not. You're like, you know what? I've had enough of all of you. So That's you're
oh, man. That's so crazy. Like
oh, yeah. No. Like, you know, obviously, I I don't want anybody to die. But but
I be same.
Rockets Overhead — Getting Used to It50:20
But but, you know, like, I'll use it. I can just use yesterday as example. Arden finished her last her last final. It's her you know, she's got, like, three more classes left, and she graduates. Her boyfriend's graduating now.
All of her friends are graduating now. So they went to a they went to a house party yesterday, and and she lost her signal. I'm gonna guess she put her phone down. Right? Like and but she didn't have a signal for hours.
And I have to tell you, I never worried about it once. Yeah. And then and then and then she got her signal back, and her blood sugar was too high, obviously, because she was probably snacking and and whatever else she was doing and not getting insulin from her automated system. And then it came back online. I gave her insulin.
She went down. And I'll tell you right now that five hours later, she got low. And then she drank a juice, and it was all fine. And I never worried about it once. I think there's Amy, give me a second.
I think that that the time that I've been doing this like, I can now see how eight years ago, someone with type one, an adult, would have listened to me and been like, this guy he doesn't have the whole picture yet. And they would have been right. And I don't have the whole picture now, but I have a lot more of it than I did eight years ago as an example. And eight years ago, I would have sounded like you. I've been like, oh my god.
The signal went by. This thing doesn't work. You gotta do this. Like, it's gonna be a problem. She's gonna die.
How's the algorithm not gonna know what to do? Is she gonna get too much insulin? And I would but you know what? Then I meet a ton of adults who have type one diabetes, and they all have something in common. They're they've been through it enough that they don't they don't flinch anymore.
They're like they're like people who live in a war zone. When Yeah. Like like, if you shot a rocket over my head right now, I would probably die. Like, I would probably, like, short circuit fall over and and explode myself. But there are places in the world where rockets fly over people's heads all the time, and I've seen videos.
They don't even flinch.
Oh my goodness. Yeah.
They're just like, this is what happens here, and you get used to it. And I think that that's a it's a bombastic example, but I'm telling you, I think maybe it's not when it comes to diabetes. Like because you feel like you're gonna die. You feel like she's gonna die. Something terrible is gonna happen.
But if you live through it long enough and have enough experiences, I don't think that feeling I think that feeling goes away to some degree. Yeah.
I yeah.
You know what mean? Now for her or somebody who's that anxious, maybe it's not gonna be that way for her. But for you, it could be because I I I genuinely wasn't worried yesterday.
Yeah. That's good. No. I do feel like I've improved. Like, the first twelve months was awful.
I would say the last, you know, six months, I've kind of felt like today is, you know, this is the worst thing that could ever happen to us. We had such a good life. Like, this is like, there's so much has changed. This sucks. It couldn't get any worse.
And then I'll wake up the next day, and I'll be like, you know what? She's not in a wheelchair. Like, she has you know, she could be stuck in a hospital bed. She could have terminal cancer. Like, every you know, she's fine.
She's gonna get on a pump one day. Her numbers will be more stabilized. Her kidneys won't fail because she potentially already has a precursor to a problem that could be exacerbated by the diabetes. Like, all that stuff's going to be fine. We're not even two years in.
We have to still find our rhythm. You know, she's a kid. She's 12. She's going through puberty. That's gonna change a lot of things day to day.
You know, I don't restrict her food because she's already had so much taken away that I'm like, eat a doughnut. I don't care. We'll just give you insulin for it. Like, she's not I'm not strict in that way. Yeah.
Amy, worry And then
worry is a waste of imagination is a is a phrase that I find really helpful because what you might not be wrong, by the way. Like, something something terrible might happen twenty five years from now. Okay?
Yeah.
But there's literally nothing you can do about it today.
True.
Right? Yeah. But, I mean, there's some basic things. Prebolish your meals. You know, make sure you understand the impact of your food.
Try to keep blood sugars from being wildly up and down, like, look for stability, try to get an a one c as low as you can that's, you know, comfortable in your life. It doesn't cause, like, problems. And then, I mean, I there's that old, like, country song. Right? I beg your pardon.
I never promised you a rose garden. Like, what did you think life was gonna be perfect? You you you know what I mean? Like so, like, there's gonna be problems along the way, and I guarantee that a a well rested, not out of her mind Amy does a better job in that moment than the one you are right now. You you know what I mean?
Like and so, like, I don't know that you're ever gonna be like, hey. The rockets are flying. I don't care. Keep playing. Like, I'm I'm outside playing badminton.
I'm not gonna slow down. Like, maybe you're never gonna be that person, and maybe you shouldn't be. I have no idea. But, like, I I don't I for everyone listening and for you, I would just tell you that as your experiences pile up, you should take stock of them and and try your hardest to not stay stuck where you are. Because right now, you're what I've heard you say we used to have we used to have a good life.
You must have said it four or five times already. Yeah. I would argue you still have a good life.
Fair. And that's fair. And and here's the thing. Like, in other parts of my life, I'm so easygoing. Like, I was a first time mom with a two month old baby who had to move to The UK for my husband's job.
I had to learn how to drive on the other side of the road with a I had to learn how to be a mom. My husband left to go to Brazil for work, like, a week or two after we moved there. So I was like, where's the grocery store? Like, you know, so there but I was like, whatever. We'll figure
that out.
You were you were like, So I can do
I got this.
So this is the
Texas, and a Cliffhanger56:12
One one month from now, we're moving to Texas for my husband's job. I've never had Texas in my, you know, in my vision.
Where in
Texas? Just West of Plano, he's working in his offices in Plano. So instead of Connecticut, we picked Texas because there's sunshine and warmth and, you know, whatever. I guess, you know, cheaper homes, and it's beautiful.
Amy, no no no, no, tax, state income tax either.
This is the other thing.
I didn't I didn't pick I didn't pick Tennessee by mistake, in case you're wondering. And so Connecticut
and New York were like, that's a double whammy, where if we go to Texas, we can, you know, save a few bills. So, you know, that's what we're gonna do. And I've had friends who have been like, I would have a toddler fit if my husband said we had to move to Texas. And I'm like, really? Well, whatever.
We've moved nine times, and I just do it, and it is fine. And everyone's like, how are you doing that? Like, I have
to just move. You translate this to that?
I don't know. Scott, if you could answer that question for me, we would both be so happy.
Well, can I give you the can I give you the advice?
Yeah.
Yeah. I mean This episode was too good to cut anything out of, but too long to make just one episode. So this is part one. Make sure you go find part two right now. It's gonna be the next episode in your feed.
I'd like to thank the blood glucose meter that my daughter carries, the Kontoor Next Gen blood glucose meter. Learn more and get started today at kontoornext.com/juicebox. And don't forget, you may be paying more through your insurance right now for the meter you have than you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now and links at juiceboxpodcast.com to Contour and all of the sponsors. Something new just arrived from MiniMed.
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#1910 Dancing with the Devil
Dancing with the Devil
Four months in, a dad shares how a family holiday nearly ended in tragedy — his 15-month-old rushed into DKA after being sent home twice with a “chest infection.”
Jump to a moment
- DKA can hide behind a “chest infection.” Heavy, labored breathing, mottled or cold skin, listlessness, and constant thirst are red flags — if a young child looks this sick, ask specifically for a finger-stick blood glucose check.
- Splitting the basal helped overnight. Dosing Levemir twice a day — roughly half in the morning, half at night — steadied the overnight lows that a single bedtime dose had been causing in a small child.
- For a toddler who may not finish a meal, timing matters. Instead of pre-bolusing a full meal he might refuse, bolus as the food goes in — or pre-bolus only the carbs you’re certain he’ll eat (like his milk or peanut butter on toast), then dose the rest once he’s actually eating.
- Caregiver exhaustion is a real risk. Broken sleep from checking a child every half hour catches up with you physically, even when you don’t notice it — protecting your own rest and mental health is part of managing the diabetes.
- Community is comfort. Tom found that simply hearing other families’ stories was reassurance that “it’s not just you” — a reminder that shared experience is one of the unsung support systems of a new diagnosis.
- Bold Beginnings Series — Scott’s starting-point series for the newly diagnosed — the foundational how-to for the first months with type one.
- Diabetes Pro Tip Series — The next-level management series Scott points Tom toward once the basics start to click.
- mylife YpsoPump (Ypsomed) — The algorithm-driven pump Kylo started on — offered on the NHS for children under two.
- DAFNE — Dose Adjustment For Normal Eating — The UK type one education programme Scott recommends; heard on tape as “DAPHNE.”
Every word of the conversation
Meet Tom — four months in0:00
Welcome back, friends, to another episode of the Juice Box podcast.
I'm Tom. I'm from Dorset, England, and my son was diagnosed with type one diabetes four months ago.
Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. Today's podcast is sponsored by US Med, usmed.com/juicebox. You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more. Usmed.com/juicebox or call (888) 721-1514.
The show you're about to listen to is sponsored by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com/juicebox. Hey. Quick word from a sponsor.
If you're already using an insulin pump, you know the basics of automated insulin delivery. But the Twist AID system powered by Tidepool takes a fresh approach that may be worth a closer look. It is a newer insulin pump designed with real life type one diabetes in mind. Check it out and get started today at my link. Visit .twist.com/juicebox.
Four months ago. Wow.
Four months ago.
Yeah. Twenty twenty six. How old is he?
Now he's just nearly 20. So diagnosis, was 15.
Oh, Tom. How many kids do you have?
Just one. And only one now.
Yeah. Like, this was our first try.
Yeah. We did something wrong straight away.
We'll just mess everything up right in the beginning, and that way we'll have plenty of time to fix it. What what how long have you been married?
We've been married two years, three years this year.
Tom, how old are you?
I am 32.
32. You've been married about three years. And Yeah.
But been together for eleven now, I think.
Oh, wow. Yeah. How'd that take so long?
Life, you know, gets in the way, don't it?
Yeah. Certainly does. Wait till you see. That thing's gonna really double for you.
Oh, I bet.
Oh my gosh. Well, first of all, I'm sorry. That's, terrible. And, I can't imagine how upsetting it must have been for a young family to go through all that.
It was intense. Yeah.
Yeah. No kidding. What were, did your your wife your you you're mad. Yeah. Did your wife have gestational diabetes by any chance or anything?
No. She didn't. No. We were checked, obviously, but all that was good.
Mhmm. And in the family, other autoimmune stuff or type one in either side?
Yeah. So, obviously, because of this, we've started digging into our family history a bit. And on my wife's side, she's got her dad has the hypothyroid, I think Mhmm. Is what it's called. And then on my side, a couple of distant cousins.
One of them has celiac. Okay. Yeah. You found a little Yeah. Nothing really.
Well, now but now you got the type one. Yeah. Yeah. What you would would you tell me what you named your son?
I named him Kylo.
Kylo? Yeah. From the movie?
Well, my wife said that we were looking at names, and she was like, oh, I really like Kylo. And I was like, oh, yeah. From Star Wars. And she was like, no. I was like, well, let's go with it anyway.
Just
so you know
She let me pick the middle name. So How
does she let you pick the middle name? Yeah. Very nice of her to let you do that.
Yeah. I know.
Well so in your mind, he's named after a Star Wars character. In her mind, it's something she saw in a book that she thought was attractive?
Exactly. Yeah.
Listen. However it works. I I need to I guess I need to understand what you guys saw, how you figured out that he had type one.
A holiday in Cape Verde4:13
Yeah. So we were on holiday at the time. We were at Cape Verde. Mhmm. We'd been treated to a free vacation, basically, because of the death in the family.
So the the death it's my stepdad's dad. His wife treated us all to this trip to Cape Verde. So we were out there and everything was going fine. It was we landed on New Year's Eve of last year. Yeah.
We thought, oh, it's gonna be a perfect start to the year. Here we go. You know, seven days in the sunshine, all that. And from the start, he was a little bit not himself. He was sort of clingy.
You know, he he didn't wanna get down from being held and stuff like that. Mhmm. Whereas, normally, he'd love to sort of play around and stuff. But just more and more as the days went on, we started noticing more and more that he wasn't himself. He was really slow.
He was drinking a lot, but he's drunk a lot his whole life. So I I don't know if that's, you know, that was anything different to us at the time. But so he started wetting the nappies before we went away. Yeah. But because of his age and stuff, we were swapping between nappies nappie sizes.
So we just thought, oh, that's what that is. You know? It's it's just him growing, and we're getting the nappy sizes wrong. But then on holiday, he started throwing up. So sorry.
I'm just gonna check. I wrote this all down because I'm pretty good at forgetting stuff. So
You're good at forgetting? Listen. So far, you're doing a great job. Except if you would have said we went on holiday to Tatooine, I think that would have been amazing.
Know, it was like Tatooine. It was just sand and rocks. Yeah. So so he he didn't wanna do anything while we're on holiday. He was just cuddling me the whole time.
Mhmm.
And a couple of days before we were set to leave, maybe three days, his his breathing started going a bit funny. He was, like, you know, just short of breath all the time.
Yeah.
So we we were asking like, my mom was there and stuff. We were asking what this could be, and she was like, maybe it's croup or something like that. Maybe he's caught something on the plane. And then the next day, it was still really bad. He was just he wasn't eating any food, just drinking water and just breathing really heavily.
“Just a chest infection”6:46
So we took him to the doctors on the island. It's it's like this resort, and they've got, like, a on call doctor there, basically. Yeah. So we took him to the doctors. They did some basic checks.
They didn't check his blood, but I guess they weren't thinking it was diabetes at the time. So they they checked his blood. No. Sorry. They didn't check his blood.
They checked his height, weight, all that, and decided that he had a chest infection and basically gave us some medicine for that and sent us on our way.
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The flight home, fighting for breath9:30
But then the day we were supposed to go, so we'd been up on all the night before, worried about him checking on him, make sure know, he was still alive basically because his breathing was so bad. And that that morning, he was just like his skin was mottled. He was his hands and feet were cold. Everything, you know, just terrifying us. So we went and got another check with the doctor, and they were like, no.
It's alright. It's a chest infection. He's alright to fly. We're like, okay. And so we ended up flying back to England.
And the whole time on the plane, his breathing was really bad. He just didn't wanna do anything. He slept for a lot of it. And when we landed, we were just like, right. We're gonna we're gonna it was about a three hour drive back to our county from the airport.
Mhmm. And we we're like, right. We're we're just gonna do the drive, get back there because it's a really good hospital, especially for children, our local hospital. So we're we're thinking, right. We'll just get him back there.
And in the car, his breathing was just like he he got so bad and sorry.
No. Tom, can I tell you something? Yeah. I'm gonna cry, just so you know. I think it's No.
You don't need to cry.
No. No. No. I'm telling you, like, it's just to sit and listen to your words and picture, you know, a baby that age, and and also having a daughter who went through something similar. I mean, she's a little older.
She was two when it happened to her. Yeah. But I know what you were going through, and I also understand the medical implications of the the stuff that you're describing. Like, you know, your your little baby is dying there, you're dragging them from Cape Verde to England and then trying to, you know and and now you're thinking about it. So take your time.
It's okay.
Perfect. Yeah. And so on the journey, his voice, he was, like, going, like, you know, like it felt like he was sort of, like, gripping on, which we didn't think he was at the time, but clearly, was. Poor little guy was fighting for his life.
Yeah.
The resuscitation room11:44
But so we we get to the A And E. We sit in the triage. It was about three in the morning at that point when we got to the A And E, So there was no one else there. They we sat there for maybe five minutes, came in. The nurse asked, you know, this and that.
Is everything alright? Checked her checked his finger, you know, did the blood glucose. Then next thing she's like, Oh, just follow me please. She was fast walking, Olympic athlete level walking from the triage straight into the ICU. At that point, my wife and I were like, Oh, what's going on here?
It's supposed to be a chest infection. Why are we doing this? Then before you know it, we were in the Resuscitation Room of the ICU. 15 nurses and doctors and stuff were in there. They were putting cannulas into his hands, his feet.
They couldn't get enough blood out there, so they ended up putting a cannula in his jugular as well.
Oh gosh.
He had a tube down his nose and, obviously, like, oxygen and blood monitors and stuff like that. So he had wires coming out of everywhere, tubes coming out everywhere. And then that's while while they were sort of, you know, prepping and prepping him in there, they would explain to us that he was in DKA. Mhmm. Obviously, we had no idea what that was.
You're like, no. It's a chest infection.
Yeah. Literally. Well, like, the doctors in
The doctor from the love boat told me that it was just a chest infection.
Yeah. Exactly. So so and at this point, I I guess I don't know really, but he he just before he was sort of, you know, crying not crying out, but, you know, like, making noises and pain and stuff. I think at this point, his body had just, like, you know, completely been like, right. They're doing this because he he didn't even cry when the cannula went in his jugular.
He was just sort of limp there. The the one thing that I was super happy with is at the start, they said, you can lay on the bed with him and have him on your chest. Mhmm. So I laid on the bed with him, and I literally didn't leave that bed for about ten hours while they were, you know, working on him, doing stuff.
Yeah.
And they they prepped him. They they explained to us that they might have to induce him into a coma and take him to a nearby, like, big hospital. And at that point, I think me and my wife were just like, oh, this is serious, serious. But luckily, his level started to flip the other way, and so that wasn't on the table anymore.
That's pretty awesome that they were able to do that. Yeah.
I that this hospital gets, you know, pretty good. I wouldn't say reviews, but, you know, everyone says that it's a really good hospital, especially for kids. And
You'll be you'll be one of the people saying that in the future too. That's
Absolutely. Yeah. No. I'm sure we'll talk about it later, but their their whole children's ward and stuff is incredible.
That's awesome. Hey. Listen. Are while this is happening, your wife and you, are you are you separated from each other? That like, I don't mean physically.
I mean, like, are you interacting with each other or are you so stuck inside your own body in your head that it's hard to even know that she's there?
No. Actually, because so my wife, she won't mind me saying this, but she's quite a nervous person or anxious. She she's not good in, like, high high stakes situations like that. So as well as sort of, you know, holding my son, Kylo. I was looking over to check.
She was okay. He's sort of calming her down saying, it's alright. We're in the best place we can be. Luckily, my grandma my mom, sorry, Kylo's grandma, decided to come with us to the hospital instead of going back to her home.
Okay.
And so she was there to comfort my wife as well while I was sort of, you know, looking after Kylo a bit.
Yeah. That's something you feel like an adult, and then all of sudden, you're like, thank god my mom's here.
Literally. Yeah. Yeah. No kidding. I feel like that way too often.
Well, I'll tell you, when your kids are sick, it it it it may used to make me feel like I was five, and I didn't know what was happening all the time. You you know? And you're you're dying for somebody to tell you something, and, you know, oftentimes, you know, if you're lucky like that and your family can be around, that's really wonderful. So you're the one that laid in the bed. My wife did the, I my my wife sat with Arden for, I think, for, like, a day and a half or two days in a bikini because we we because we came from a it was like a beach, and my wife was just in a sarong and a bikini, like, they like, holding her, and I don't think she ever got up.
Like, she just held her the whole time with all the tubes and everything, and Yeah. It is very it it once you see the you know, like, once you get to the part where you're like, wow. This is, a life or death situation. It every everything just, you know, kinda goes away except for what's happening. How long until he was back to himself?
Coming back to himself16:43
So he probably took about a day before he was getting more like himself. He's he's he's such a lovely little boy. He's so bubbly and happy and cheerful and smart and just the best. And so seeing him like that was just, you know, horrible. But but he first, he was just sort of more himself around us, but as soon as any nurse come came in, he'd just be like, no.
Like, basically telling him no. And but by the by the end of our stay in the hospital, he was running around the wards, being funny with the nurses and you know? So it it took probably a day until I started seeing him again. Mhmm. But it did worry me actually because one part of it, they took us in for a CT and a chest X-ray to make sure he didn't have any fluid on in his chest or brain.
And when they said that that was a option, you know, that that could be a thing that they wanted to check, me not seeing him how he was, I just thought, oh my goodness. Is this why he's not him? You know? Yeah. But luckily, all of that came back negative.
So it was just him exhausted from fighting for his life.
Yeah. Oh, it's really crazy. Wow. Here's what makes Twist different. It measures the volume of insulin delivered with every dose using Soundwave technology.
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You enter carbs, then something changes, and you do not actually eat what you planned. With Twist, you can go back and correct or remove the carb entry, and the system adjusts based on the new information because diabetes does not always follow the plan, and your tech probably should not expect you to either. So at what point do you start trying to understand type one diabetes, or is it just a fight for life the entire time, or is there a moment where you think, like, okay. He's stable. We're gonna be leaving here one day, and what do I need to know?
Yeah. So for the first probably day because, I mean, by the by the time we got settled down in the room and were sort of left to our own devices on the first day, me and my wife had been up for thirty nine hours at that point. So Yeah. Anything that went in on that day was sort of a blur. You know?
Learning type one, and the honeymoon hope19:35
But the next day, they sort of sat down with us, explained to us what type one is, you know, what the treatment is. And at first, I was sort of like, oh, could there be something that, you know, makes it look like it's diabetes but isn't? Because I was thinking I don't want my son to have this lifelong illness.
Sure.
They're like, no. It's diabetes. I was like, okay.
You sure you sure it's not just a cold and it's gonna go up? Yeah. Yeah.
Yeah. Are you sure? Could be, you know, he stubbed his toe or something.
I don't know if you've ever heard me say you've you've been in this a little bit of time. You probably haven't heard this, but I think Arden had type one for I don't know how long, honestly. I didn't know much about it back then when she was first diagnosed. Right? But she clearly had these couple of days where her honeymoon was so significant that she almost didn't need any insulin at all.
Wow. And after maybe the second day of it, I called off my friend who's also my kid's where was my kid's pediatrician? They're older now. They don't have a pediatrician anymore. And I I prefaced the conversation by saying, I know I'm crazy.
Just tell me to shut up and get off the phone, but is it possible Arden doesn't have diabetes that you got like, somebody got this wrong because I haven't had to give her insulin for a couple days. And he was like, yeah. No, man. Like, she's she's got type one. Like, try to let that go if you can.
I was like, alright. I didn't understand. Actually, back then, nobody said honeymoon or I think that wasn't a thing anybody actually ever said to me. So, anyway, it was just these magical couple of days where she didn't need insulin, and and immediately your brain goes right to where yours was. Like, maybe it's something else.
You know?
Yeah. Yeah. It sucks. Absolutely.
Yeah. Well
It's all the glimmer of hope in there.
Yeah. Yeah. The tiniest bit of you just think, like, oh, maybe, you know, maybe. You were talking about the exhaustion, and not being able to remember anything from it. That hit me while you were telling the story.
I'm like, I I I wanted to ask you. I didn't wanna break up the story, I was like, how what's the flight like from Cape Verde back to UK? Like, how long had you been traveling?
So we got up the the day we were left to fly, we woke up at six because we had to get everything packed and out of the hotel by, like, 11:12, I think it was. Mhmm. And then it was sort of three hours to the airport there, eight hour flight, three hours drive back. So we've been traveling for, you know, over half a day.
And not only that, but the the evening before, you weren't really sleeping. You were staring at the baby. Right?
Oh, yeah. Yeah. Every sort of twenty minutes, I was waking up holding his chest, seeing if he was still breathing.
Yeah. Isn't it isn't it really magical kinda what your body can do? Like, in any other situation, if I told you to stay up that long, you'd fall asleep. You you know what I mean? Like, you wouldn't be able to do it, suddenly it's for that kid, and you're like, well, it's no problem.
It's it's magical. You're also making me think of you you know, I had I had a gentleman on maybe six months ago whose child was in a very similar situation and passed away. They didn't get to the they didn't get to the medical care. And, well, they did, but the medical care kinda didn't didn't help them correctly. And it just it's it's like, I'm so happy that's not your situation, but at the same time, like, I don't even know if do you know how close you were to that going the wrong way?
Dancing with the devil22:49
Have they ever talked to you about it?
Yeah. Not really. I mean, only from the reaction in the ICU, you know, how quick they they were because it was early in the morning, you know, they were calling in the diabetes specialists and, you know, ICU specialists to come see us and prep an ambulances for us and stuff. So at that point, I think it was quite close. Yeah.
I wonder, you know, if what if it was one more day on holiday sort of thing.
Oh, for sure. I mean I mean, I I don't wanna talk about it like that, but I I think from your description of the Kussmaul respirations with the breathing, you know, the skin color changing, listlessness, then the the noises he was making. I mean, I mean, I'm so happy for you and him and your wife, but, man, you guys were you were you were dancing with the devil. I don't even think you knew it. You you know?
Yeah. So oh my gosh.
All the time.
Yeah. Yeah. So tell me what happens then. I mean, this is a very short period. Like, you don't know you still don't know about diabetes.
You're only, like, a few months you're still a few months into it. Right? But, like
Oh, yeah.
Where's the learning begin? Like, what's the first thing someone tells you? Why do you know who I am three months later?
Yeah. So the the first day after everything happened, the next day, we were having visits from their diabetes team explaining to us, you know, we'd see the diabetes specialist. We'd see the nutritionist. We'd see the the head of the diabetes I don't remember what it's called, but, like they've got a whole team there in the hospital for the diabetes. Yeah.
The NHS, Dexcom, and the old-school way24:19
And so the doctors would visit us as well, and each one would explain a little bit at a different part of the day. And so as the day went on, they explained to us what they're doing because I think he was he was still getting insulin through an IV or the cannula before maybe for another day or so until his levels even though. I can't remember exactly, but we didn't start doing the pens until a couple of days in, I think.
Okay.
And they they started helping getting us to count our carbs, sort of, you know, quizzing us on it, seeing how we do, checking our notes, showing us how to do it and all that
Mhmm.
With the finger pricks and everything. And by so we were in the hospital for seven days, I think, six or seven days. And on the very last day is when they give us the sensor, the glucose
the glucose? Dexcom Libre?
We've got a Dexcom six.
Okay.
I think they wanted to give us a seven, but at the time, there wasn't a pump that was for his age that worked with the Dexcom seven.
Okay.
Or as how it's explained to us anyway.
Well, they so they gave him a pump too?
No. So that they wanted us to have a few months at home doing it the old school way, you know, with a pen and that. Uh-huh. I suppose not the old school way, but the old school way from before a pump. Yeah.
Yeah. Yeah. So they wanted us to really be sure if you know, in case the pump ever went wrong or for whatever reason we we couldn't use the pump, they wanted us to be able to have something to fall back on.
Mhmm.
Which I think is why they left the sensor until the last day. They wanted to make sure that we were confident on
our own. With the testing, with the, like, finger sticks and everything.
Yeah. Exactly. Yeah.
How does he how does he deal with that?
He's really good with those, actually. So the the pens, he doesn't even bat an eyelid with so much. So we give him one to play with every now and then without a needle, and he'll even lift his top up and pretend to put it in his belly. Mhmm. So that he's fine with.
And the finger pricks, he he really is fine with that as well. We call it an ouchie, but he just does a pretend ouchie. He like, oh, like, as a joke sort of thing. So he's really good with that.
But how we do is he again?
So he's nearly 20. So he's about a year and a half, basically.
He's got a whole personality.
Yeah. Yeah. He he really does. He's such a little unique boy That's awesome. In the best way.
Tom, that's wonderful. Yeah. I'm sorry. But but so they you you so you're doing pens right now with the CGM?
No. So we've literally just in the last couple weeks got Yipsa pump, I think it's called.
YipsaMed?
YipsaMed. Is that
how it is? Yeah. Yeah. Yeah. I know that.
Okay.
Because I think, again, like they they mentioned to me before, it's the only one for under two years that they recommend
Okay.
At least with our health system. You know, that's what they say.
How is that paid for? Is that like, do you guys have private insurance, or does the the government pay
for it? Yeah. This is all on the NHS, the National Health Service. Mhmm. So from the start, we haven't paid a penny, basically.
Wow.
All of our prescriptions are free. And because it's a lifelong condition, he gets them free for life. We have they constantly you know, he's got access to the children's ward at the hospital till he's 18. He he gets regular calls from the diabetes teams, dietitians, and stuff like that. Mhmm.
In fact, just before I come on with you, we are having an online call with his diabetes doctor talking about the pump and, you know, changes to make in that.
Very nice. Do have they offered you the DAPHNE program?
No. I haven't even heard of that.
That so look into that if you care, but it's a it's an educational program about managing type one diabetes that's, unique to The UK, and people really love it. Okay. So if it's if you think if you feel like you need more, that's a good place to look.
Cool.
Yeah. Yeah. So they're making changes to settings. So, I mean, how much insulin is he possibly getting? How much does he weigh?
He weighs twelve kilos now.
Well, that's how many wait. Hold on. I'm not gonna figure that out on my own. Is that twenty four pounds?
It's twenty six pounds.
Twenty six. Okay.
I I made a little conversion chart on Excel this morning because I thought this might come in handy.
Thank you.
But when I well, yeah, because when I first started listening to your podcast that you're like saying your guests were saying my kid was, you know, his blood glucose level was 300. And I'm like, Jesus. That's huge. You know? That's crazy.
But then I was like, oh, okay. Yeah. You guys use a different unit to us. Yeah. I should have guessed.
But
No. But, I mean, it it really does outline all the things that are new and that you're gonna learn over the next year or so. Just every day might be a new experience, you know. Yeah. Who's who's in charge?
Like, is like, what's your division of labor setup like on the diabetes? Are you guys splitting it? Is it more you, more your wife? Like, how are you handling all that?
So I would say I'm probably the most hands on with it in charge of the overall, you know, diabetes care. But my wife's my wife doesn't work two days a week, so she has him two days a week, and she's really good at looking after him. But stuff like when we change his sensor or when we change his cannula for his pump, she's still a bit wary about that. So she's done it a few times, but not as you know, I do it most of the time. You said something?
It depends on that.
Yeah. Yeah. So who it falls to is okay. You you both are pretty comfortable with it right now. Yeah.
And you mentioned earlier about her not handling, like, big issues. Well, is she anxious?
Yes. Yeah. She is anxious.
Okay. Interesting. So, is that rearing its head for her? Is she able to overcome that for this problem, or how is she doing?
Yeah. I think so. She she did go to her doctors about it, which is getting a bit creaky. She she has gone to the doctors about it, so she's getting treatment for it. But before that as well, she she does handle it really well.
It's sort of once she's done it a bit, she's sort of overcome it, if that makes sense. Sure.
Yeah. No. I mean
Even with her jobs and stuff, she she went into a supervisor role with us, and at first, she was really worried about it, but now it's, like, one of the most profitable bits in the company. So
Oh, so she worries upfront then figures it out and then kinda lets it go after that?
Yeah. Exactly.
And finds a different thing to worry about.
Exactly. Yeah. The same with when she she was learning to drive, she was like, I'm never gonna do it. Then she passed with no minors or anything, you know Mhmm. Flying colors.
It's like
That's the difference between men and women, by the way. We blindly just believe in ourselves, and they doubt themselves even when they don't have to.
Oh, yeah. Yeah. Blindly to a fault.
Oh, absolutely. Ask me how perfect I am. I'd be happy to tell you about it, Tom. Well, that's nice that she went to do something for herself. Was that precipitated by the diagnosis of your son?
Did she feel like I need to work on this now?
I think she's dabbled with it in the past as well, but never really found anything that's worked with her. Okay. But this time, I think she was just she she never gave it a proper try, but I think this time, she's like, I'm doing it for Kylo. So
It's wait till you see how that happens. That that's a very common I I guess, a very common story for people. They they will, they will put off helping themselves over and over again. But if you give them the opportunity to help themselves so that it'll help a loved one, they don't seem to have any trouble with it. It's really Yeah.
Really very interesting. Your wife doesn't have anything else though. You mentioned thyroid. Is the thyroid on her side of the family?
Yeah. Thyroid's on her side.
Has she had her tested ever?
No. I don't think she has, actually.
Do you think she has any symptoms of it?
To be honest with you, I don't know what the symptoms are.
A thyroid checklist for Mum32:46
Hair falling out, dry nails, anxiety, trouble being rested even though you've slept. That's a big one. Is she tired all the time?
Yeah. I think she can be. Yeah. Yeah. A few of those sounded like some boxes to tick.
It it work it's worth looking into. Yeah. Yeah. Because maybe because you will see sometimes you will see people get put on, like, like, anxiety medications or SSRIs or something like that for, like, depression or, like, low mood or something. But those are it can be can be side effects of of a thyroid issue.
And if she's got it in the family and your son has type one, it's probably worth looking into.
Yeah. I'll I'll get her to do that.
Thank you. Yeah. Put her on, episode four thirteen of the podcast. If she's interested, it'll explain kinda how to, how to look, you know, the all about it actually. Even so much as saying if I have symptoms, but my labs don't come back as out of whack, it that doesn't always mean something.
So there's a a certain test to look at to see if maybe the medication would be helpful anyway. It's just one little pill a day.
Yeah. Perfect. Okay. I've written that down.
Good. Good.
Good.
Yeah. Episode four thirteen will explain the whole thing. Yeah. Okay. Well, I just wanted to get that out of the way because you mentioned that you mentioned her being anxious earlier, and then, you know, that's it.
I have a list here for you real quick. It's fatigue, low energy, feeling sluggish, weight gain or difficulty losing weight, feeling cold more easily than others, constipation, dry skin, thinning hair or hair loss, puffy face, hoarse voice, muscle aches, weakness, cramps, or joint pain, slow heart rate, depression, low mood, brain fog, memory problems, trouble concentrating, heavy or irregular periods, low libido, elevated cholesterol, swelling in the hands, feet, around the eyes, brittle nails, slow reflexes. That's, you know, some stuff to look for. You don't have to have all of it.
No. That a lot of those ticked.
Oh, oh, look at me. Look at me saving a life. Here I go, Tom. Alright. Sorry.
I just I know I imagine that people have been listening for a long time or like, oh, Scott's being sarcastic. And people who who picked this episode up as the first one is like, the the host seems like a prick.
I'm sure they don't think that.
Well, some of them do. You should see the reviews. Now, anemia, is also something to look for. So if she's getting a full thyroid panel, she might ask them for a full iron panel at the same time.
Cool.
Okay?
I'll will will send that her way.
There you go. Then the next gig gets named after me.
Yeah. Yeah.
Although you guys are gonna need a good solid five years before you try that, I bet.
I think I think we're done.
Sounds like looks like I felt like I got hit by a truck. I'm I'm good, man.
It was funny because we were like, I'm a nun. We're like, maybe if, you know, in a few years, we're financially in a good spot, we'll try for another. And then this happened. It's like, now we're done.
We're good. That's pretty good. Well, listen. No no lie. We we really thought we were gonna have three kids, and our second got diabetes.
And we're like, maybe we should stop because it just I mean, it was it felt overwhelming. You know?
Yeah. I mean, I've listened to a few episodes of podcast now as well, and it sounds like when one kid's got diabetes and one hasn't even if it's not true, lot of the times the kids feel like there's preferential treatment. So
Oh, that was gonna happen whether one of them had diabetes or not.
Yeah. I bet.
They're gonna be like, he likes her better than me. Wait. What? No. I don't.
Yes. You do. And then you and then you think, okay. Well, obviously, I'm being nicer to that one than the other one. You go to the other one, you say, hey.
And they're like, oh, no. You definitely like her better than me. And I'm like, oh my god. Awesome. Glad we did this.
Yeah. Right.
No kidding. So, I mean, I don't know. I I guess I'd just be interested in hearing anything, like, you have to say because it's also raw for you. Like, what do you feel like is worth sharing with people right now?
The children’s ward: balls, bubbles, and blankets36:47
Well, a few things, really. A big one for me was sort of how well Kylo was treated in the hospital with their staff on the children's ward.
Mhmm.
From so for the first, I think, three or four days we were in there, it was one on one care with just one nurse. She wasn't seeing any other patients other than Kylo, or Kylo wasn't seeing any other nurses other than this one nurse. So they could really sort of focus on him and make sure he's getting the best treatment possible. Even from the first day he was in the room, they have some entertainers on the ward, full time entertainers that they have a play area there, and they brought him a blanket that was knitted by someone that donates blankets to the hospital that he gets to keep. He got a little stuffed bear someone made that he gets to keep, and they sort of was were asking us, you know, what's he into?
And we said stuff like he likes, you know he sounds like he's a dog, but he likes balls and bubbles and lights. And so they come back a little while later with a load of balls and bubbles and a disco light.
You know what he loves? If you throw a ball, he loves to run and get it and bring it back. He loves that. They give him a treat. It's fantastic.
Yeah. Exactly. Balls and bubbles. No. Listen.
I like those things. Actually, I was walking out of somewhere a few weeks ago. It's this windy day, and it was a it was a scenario. Listen. I'm just gonna tell you.
I was at a reptile convention. I don't need to be judged, but I I was at that. Right? And I was walking out, and this little girl had a bubble wand. And she dipped it in a thing and just walked out ahead of people, and it was so windy that the parking lot just filled with bubbles.
And I have to tell you Oh, wow. It was really lovely. It made me feel like, well, this should happen more often. You know? So I don't know.
We should, bubbles and balls is a good idea, maybe. So they bring him all that stuff, then Benny Hill runs through. They're really trying to entertain them. Right?
Yeah. Exactly. Well, that yeah. That's another thing that, you know, each day they'd have someone visit the hospital. So one day, there was a a sort of someone bringing a dog around that goes to see all the children.
Another time, there was a lady with a guitar that, you know, plays music through and stuff like that. So it was full on trying to keep him as happy as possible.
Yeah. That's very nice. Well, they want him to have a good experience at the hospital. Right? Because you might have to come back one day, it'd be nice if he had a good feeling about it.
Yeah.
For sure.
So what do you I mean, how much insulin does he use in the course of a day?
I think at the minute, it's about nine units of insulin.
Okay. How much of it's basal? Do you know?
Do you know what? I didn't write that down.
Do you shoot the basil once a day?
When we were on the pens, we did it twice a day.
Okay.
We did, I think, one and a half units at night and one and a half units in the morning.
Was that Levemir?
It was Levemir. Yeah.
Yeah. Yeah. Okay. So you that's a it's smart for a little kid like that. So they split the basal when you were injecting one and a half, one and a half, and then, obviously, gets food with meals.
And, like, what's a what's an average, like, size meal carbs and insulin for him?
Yeah. So this was the tricky thing because sort of his bedtime milk was bedtime milk was perfect because it was half a unit of insulin. Mhmm. So that worked out great. But whenever we were giving him sort of dinners and stuff like that, he'd it'd be, like, one point one units or one point four units of insulin.
Then you have to decide, is he gonna eat more? Is he gonna you know, when you don't even know he's gonna eat that to begin with, or do you eat under bolus and then try and figure out afterwards? So, yeah, when it was on the pens on that half unit increments for for a kid that small, it was just impossible.
Still a lot. Yeah. A half unit's still a lot. Hey. You just said that's the tricky part.
Let me let me I don't wanna break your bubble here, but, like, you're gonna say that about 8,000 more times in the next ten or fifteen years. Yeah. I'm sure. Yeah. The tricky part is gonna keep changing.
Wait. It looks like he won't pre bowl. He's 15. He won't honey, he won't pre bowl us his meals. You'll be like, oh, no.
That's the tricky part. Then it'll be the next thing and the next thing and the next thing.
Keep moving the goalposts.
Yeah. But you're paying attention really well already, like, little things. Like, you seem on top of it. What do you do for a living?
I'm a manager at electronics factory.
K. So production, people, like, overseeing things, paying attention to details?
Yeah. I mean, it's only a small company. There's only about 15 of us there total, but, yeah, trying to keep everything running, keep on top of things.
Yeah. You feel like you're doing that with the diabetes too, I imagine.
Yeah. I think I've got quite a scientific mind and quite at school, it was more the sciences than the arts for me. Mhmm. So I I've got that kind of thinking where I I figured find problems and solve them, basically.
Yeah. Well, that'll help you with this. Is it making you crazy, or are you doing a good job of stepping back from it at times?
Exhaustion, sleep, and the parents’ toll42:06
I think there's been stages. So when we first went home, I was probably I don't sleep well anyway. I probably sleep about five hours a night interrupted. But when we first got home, it was, like, every half an hour, was awake just checking his levels, seeing if he's alright.
No, man. I know.
But but that that sort of wavered. Now when we've got the pump, it's back to that at the minute. Just just so I know that it's alright, and then I can leave it again. Mhmm.
Yeah. So, I mean, you have it on your phone as well. Right?
Yes.
Yeah. So you don't have to go to where he is. But No. Are is he having many lows overnight?
It's been mixed at the minute. So the diabetes team, when we first got discharged, they'd call us every day to sort of tweak levels and that. Then they went to twice a week, then they went to once a week where they'd call us and help us tweak some levels where we thought it was necessary and checking with us. But, yeah, he he he was going low in the night quite a bit, and I think that's when they'd switched his basal to twice a day instead of once.
Were can I ask you before you split the before you split the Levemir, were you shooting it at night?
Yes.
Yeah. Night. And then it was too heavy, and he was getting low overnight.
Yeah. Exactly.
Okay. Okay. Well, that's good. By the way, that's well done. Levemir is an older insulin, but it's perfect for something like that.
Yeah.
It's funny actually because we're just about to swap over to Lantus, is it? Lantus? Lantus.
When they put you on the pump instead.
So just as a backup because I think they're stopping making Levemir or stopping it in this country at least.
They are. By the way, if you wanna hear a lady who is in Washington DC trying to fight against it, she's been on the podcast a couple of times. Oh, really? Yeah. She's trying to figure out a way for them to keep making Levemir.
I don't know if that'll work. That's it sounds like a big fight to me, but it's interesting that she's trying for it so much. What are you finding community online, or where are you finding people to talk about all this?
I sort of talked to, like, my friends and work friends and that in passing about it a little bit. But other than that, I just really listened to your podcast, to be fair. Oh. But I think my wife's on some Facebook groups, and, actually, we we got really I don't know if you'd call it lucky or irony or something, but my wife's auntie is a pediatric nurse who specializes in diabetes.
Oh my god. Okay.
So so she was actually when when we got diagnosed, she came to the hospital and stayed with us for a while to help us with it as well.
Oh,
nice. But, yeah, it's a sort of a a lucky but unlucky thing that we've got someone really close to us that, you know, helps us with that.
Do you know how she got into that line of work?
I don't actually. I've never really asked her. Yeah. But yeah. Not because of diabetes in the family.
No. No. No. That's what I'm saying. Yeah.
It's not in the family, but she ended up there. So that's interesting. Yeah. Sorry. I cut you off.
I apologize. What were you gonna say?
Oh, goodness. I can't remember really.
Sounds like that's over. That part is gone. I don't know what you're saying. Hey, Will.
I mean It it the community's one that yeah. So I I think my wife sort of dabbles in it a bit, but at the minute, we haven't really seeked out any communities nearby. We're just sort of getting getting to grips with it ourselves. And then I'm sure probably we'll try and, you know, see some more people with it. But to be honest, listening to the podcast for me is just it's interesting to hear other people's stories.
That enough for me is a bit of comfort that it's not so bad, and it's not, you know, just you that's going through this, if that makes sense.
No. No. No. It it it more than makes sense. I'm glad that you found it and that it's been helpful for you.
I think that some of the unsung support systems of having chronic illness in or having one in your family, community is a big part of it. It it really is to that feeling of, like, it's not just me is very helpful. Yeah. You know? And especially in a situation like you've been at this, what, like, three or four months Yeah.
It probably feels like a lifetime. And I'm sitting here fully remembering the first few months of my daughter's diagnosis, and she was two, and she's gonna be 22 in, like, a couple of months.
That's crazy. Yeah.
No. It really is. I used to be young. I I I for sure I for sure was, you know. It's it's a long process, and it will change over and over again.
I think, you know, again, another another tool that'll come in really handy that's very in specific is just trying to be flexible and, you know, keeping up with, yes, day to day, but understanding that things come and go and they change. You have to be able to let go of them or not take things quite so seriously at certain times. I think that's why some of these conversations are probably helpful to you because they're lighthearted. You know, we're talking about something really devastating. And, I mean, listen.
I don't even think we've ever just said it out loud yet, but, like, your son just about died. That's Yeah. That's something, man. That's a hard pill to swallow, and that's gonna come back at you a couple of times. Like, you know what mean?
Like, yeah. The fragility of life is is like, once you get through this part here, you are probably gonna have a moment where you reflect on this, you know. And it it it'll be hard to deal with.
Few times, to be fair already. Every now and then, I'm just like, you know, the the severity of the situation weighs down on me, and I'm just like, oh my goodness. Yeah. It's funny, actually. I was I wrote up some notes for doing this podcast just so that I had everything to hand so I wouldn't forget anything.
And my wife came upstairs. I was typing this. She came up, and I just my face was wet with tears. And I was just like, oh, yeah. No.
This is a sad thing. This is tough. Yeah.
Yeah. You're you're acting like, oh, I'm just gonna give you a high level overview of what's happened to us over the last few months. But it's a it's a devastating, I mean, event. It it just is. Yeah.
You know? And Yeah. And so then that mental health side of it becomes really important too because you you hear people in all, you know, in all forms and factors of of being involved in diabetes, and sometimes they're fighting with their spouses, and sometimes they their anxiety is crippling, and sometimes they're so laid back that you think, like, jeez, pay a little more attention to it. You you you know, like, there's you don't know which way you're you're gonna kinda go to. But if you have a, you know, if you have a bit of a plan and you're able to stay flexible with that plan to some degree, and and realize that things are gonna continually change and that they're really the only way to getting to, like, calm is through experiences, I think that's really important to to just to understand that, you know Definitely.
Every time something goes wrong, you know, quote, unquote, it's a great opportunity to just look back and say, okay. What happened here? Like, how can I do this differently next time so that we have a better outcome? And those experiences end up being what teaches you. Like, you need the basic tools.
And if you go through, I mean, if I was you, if you haven't, I'd listen to the bold beginning series of the of the podcast, and it'll help you with all this. You you know? And and then one day, you'll wanna level up a little bit. You maybe you jump over, do pro tip series. But overall, like, you just have to have the experiences.
You have to pay attention to them, and then use them as data for next time.
Yeah. Yeah. Like not having another kid.
Well, it's just like it you're it's it's like learning to walk all over again. Nothing makes sense. Nobody tells you anything. I mean, even that, there's phrasing. Know, people are bolus, basil, levamir, Lantus, ipsumed.
I mean, look at all the weird words you've said in the last forty five minutes already. You know, like, words you didn't know four months ago. And Absolutely. And that's overwhelming too. You you know?
So just take your time, you know, and then I mean, my best advice might be just leave yesterday behind. I try not to carry any of the anxiety from today into the next day because it it will build up on you. And I and I and I should say this too, you gotta sleep.
Yeah. Do know? I've just never been good at sleeping, so I've I've tried to get that figured out. But last time I went for a sleep study, and they checked me for one night, and they said don't sleep on your back. And I was like, okay.
Thanks. Big help. Appreciate it. Cheers. Yeah.
Awesome. Good good use of my time. No. But, I mean, listen. Maybe you're a guy who gets five hours of sleep and you're okay.
What I'm saying is don't get exhausted.
Oh, yeah. Yeah.
Yeah. And the broken sleep is hard on you. Like, you have no idea right now, but, you know, I did what you talked about, like getting up here, checking again. I did that for years. It it, like, devastated me, but I never knew I was devastated by it, like, physically.
Yeah. And Yeah. It wasn't until one night I was sitting up, like, staring at Arden's CGM or doing whatever I was doing or testing her a million times. And think my wife woke up in the middle of the night and she looked at me and I was just laying there with my eyes open. And she's like, what's wrong?
And I was like, I'm gonna have a heart attack. And she's like, what? I'm like, my heart is pounding. I'm so exhausted. Like, I'm so freaking exhausted.
She's like, go to sleep, and I was I I was like, I can't. Like, you know, like, you know, and truth is is, you know, I I could. And, you know, it's twenty years later, and she's still here and doing great. So Yeah. You know, there's gonna be moments where you're gonna have to be up in the middle of the night like anything else, but you absolutely have to find some sort of a balance.
I mean, looking for balance, between health and good outcomes and your mental health and your physical health. Like, it all has to work out. You can't give yourself away for him or give him away for you. Like, none of that's gonna work. You know?
Yeah. Absolutely.
Wow. You grew up pretty quick here. He went from, like, 30 years old, like, hey. We got married finally. You know us.
We're just busy, busy. So, like, woo.
Yeah. It was all sunshine and roses, married kids, then there you go. Curb ball.
Exactly. Yeah. You should probably have sex again in, three years. Sorry. That might be true.
I apologize. But it does bring up a a good point. It's tough with a baby, but if you can find somebody in your life, your mom, her mom, somebody, you know, that could even be caregiver for a couple of hours so you guys could go out once in a while, get away for a few minutes, that would all be a really big deal for you.
Grandma, date nights, and finding balance53:09
Oh, I do have to say that my mom has been the most amazing helper out of all of this. So before he had was diagnosed with diabetes, she'd have him two days a week. She's retired. She was in the fire service, so she got to retire at 55, which was pretty nice. She loves the kids, so she just wanted to be a help.
Me and my sister, we both got kids now, just wanted to help with you know, look after them because that's what she lives for. Since he's been diagnosed, she's still doing that. She still has him twice a week while my wife goes to work. In fact, just last weekend, she had him for the night while we got to have a little date night and fall asleep on the sofa at 09:00.
Good for you. That's awesome. Also, if my kids are listening, if you make kids, I will immediately retire and take care of your kids. So that sounds pretty great, actually. No.
Seriously, I would enjoy that. I I I mean Yeah. Yeah. I don't know how much you know about me still, but I was a stay at home dad most of my life. So Right.
Yeah. Yeah. Yeah. So I would if if anybody wants to make a baby and then just give it to me for a while, I'd be good with that.
Yeah. I I so every now and then, whatever our situation is, I have to stay at home with Kylo while my wife or someone goes to work, and they're the best days in the world when I've just got him and me doing whatever we wanna do. It's just
No other response. No no no other forget no other responsibilities. There's, of course, responsibilities, but there's no other thing that supersedes that. And so everything else sort of fades away and you just, you know, you're just there doing that thing. Yeah.
Absolutely. Yeah. He's just such a character. I look at him and go, this is perfect.
We used have this little house when Arden was little, and I can I can still see the first time like she stood up like by the television and walked across the room to me? Like I can like I can still see it in my head, you know. So Yeah. And I don't know what I did that day. Probably laundry, made food, watched her walk.
That's probably the end of it. You know? I don't yeah. Yeah. Yeah.
Yeah. So don't well, listen. It it sounds like you're doing well. You don't feel overwhelmed or anything? I mean or so much you you do, but not to the point where it's knocking you over?
Yeah. I mean, I I feel like there's still some days where, you know, a lot goes on. He's high and low every other hour sort of thing. You're like, oh, this is so much work. But for the most part, he's he's so good with it.
We're getting good with it, and, you know, we're just living a happy life. And you you we just look back and go, no. It's not too bad. You know, it could have been worse. He could be in a wheelchair.
He could have some brain disease or something. As far as, you know, illnesses go, it's not it's it's pretty manageable, isn't it? So
Yeah. That's a very reasonable expectation that, you know, that it is pretty manageable. You just need to know certain things. And but but how do you get those things? Like, so what happens to some people is they don't hear that information.
It doesn't get delivered to them or something like that. And I guess that I'm gonna figure this out. Like, how did you find a podcast about diabetes? But at the same time, you have a decent microphone, and I'm now noticing in your picture that there's egg carton on your wall. So why why is your room sound
my picture.
Why is your room sound dampened?
So me and my friends like to play video games, so we just stream every now and then. Stream to no one, but I still enjoy sort of putting the videos together and, you know, making them a bit of fun. So that's it, really.
That's what it's for. Does that Yeah.
It's it's for good audio so that the three viewers that watch my videos Are
really being delivered high quality content?
Yeah. They're like, wow. This is a good good idea.
Jim, Bill, and Sammy. The Yeah. Exactly.
Well, more realistically, me, me, and me checking the quality on three different devices.
I'll tell you what. This sounds great. It looks terrific. If anybody ever decides to listen, they're gonna be thrilled with this.
That's good.
Yeah. I just built I've been making this podcast in a room for twelve years, and I just built a small studio space that I'm I'm still fitting out, and I have a lot of traveling to do over the next month for work. So I'm not gonna get to do it in June. But I'm trying to decide right now what to put on the walls for sound. If I'm just gonna do, like, you know, simple frames with with fabric over them or if I was you know, some some people are like, they do those wood slats.
They look all fancy, but I don't know who would I don't know who I'm worried about it looking good for. Yeah.
I was gonna say they do some really good looking sound dampening stuff. But, again, near an audio podcast, unless it's for you, you know, I suppose it is nice to go into a space and go, yeah. This is my space.
Yeah. I'm too old. I grew up broke. I don't care what it looks like. I just want it to work.
You you know what I mean? Like, there's part of me that would just hang curtains around the walls and just be like, here. That's fine. So
Yeah. I mean, what what you can't see in that photo, because that's quite an old photo now, but I do have one of my wife's old blankets stapled to the wall in the background. And
she's still married you. That's nice. Yeah.
But you don't need this. It's summer. I love this.
She's like, goddamn it. I waited too long. Now I'm stuck with this guy. He's just he put my blanket on the wall, but we've been together for ten years. So what am I gonna do?
You can't say no now.
I'm pod committed. Goddamn it. I didn't know this was gonna happen. No. Yes.
I'm not sure what I'm gonna do, but I'll probably just build simple frames and and hang them. I mean, the those sound diffusers working. I mean, I have them in here. I'll probably just move these downstairs and get a couple more if I'm being honest. Yeah.
I mean, I think there's a point of diminishing returns anyway where, yeah, average viewers listening sort of on loudspeaker on a phone or something. So it don't even matter.
Yeah. There's a I I I have noticed over the years that bad audio will will chase people away. And and so I wanted to be a comfortable experience. I also have an editor which, you know, who does a great job of making it sound much better, to the point where sometimes I meet people in person. They're like, you you don't sound the way I expect you to.
I'm like, yeah. Yeah. Someone's not behind me tuning my voice for you. So Yeah. But I wish
I had an editor.
Yeah. Yeah. Yeah. You wish I had an editor.
You listen. For real life.
Yeah. For real life. And that
the amount of uhs and and forgot.
I try I think I'm I'll tell you in the beginning, I wasn't I mean, ummed all the time. I used to I tell people all the time I used to hang sticky notes in front of me with words on it with lines drawn through them. Like, don't say that. Don't I used to have connecting words and, you know, like, stuff like that. I tried to get rid of as much of it as I could.
But at the same time, I don't know. You can't not say, It it some sometimes it just happens. And some of it sounds unnatural if you take too much of it out. You know?
It's too perfect.
Yeah. Nobody speaks. Like, that'll you know, if if you edit it too well, it'll just sound like it's AI. And I have enough content now. I could probably train an AI to make these episodes, so don't give me any ideas.
You know what I mean?
You could retire.
Scott's been doing this for twenty years. I'm like, no. I just
Yeah. Is this AI? How can I check?
Yeah. You can't. Leave me alone. But I am real. You should trust me right now.
Okay. But, you know, sometimes people are like, oh, it would be great if you did video. And I'm like, with who? Like, what am I gonna do, Tom? Like, you know, make you set up video and then you capture your video and I can't who's gonna edit that?
Like, who's gonna like, that's I I love it when people say that. Like, it's easy. You know what I mean?
Yeah. Add so many dimensions to it, doesn't it?
Yeah. And for I don't know where the return is for that, to be honest with you.
No. I mean, from my videos, had we played video games, I have a web webcam. I'm like, this just isn't fun entertainment. I'm just staring at a screen.
Yeah. There's one guy that made money doing that, and he's still the one doing it. Like, if it you and you probably know who I'm talking about. Like, the guy that plays Call of Duty, he's got the dark hair, and he's got, like, the whole thing. He's made, like, a life out of it.
Probably a millionaire, like, 10 times over the
but, yeah, Nick Merx comes to mind.
Yeah. Him. That's who I'm thinking of. Yeah. So my point is is he's doing it already.
He we don't need you. It's it's and I feel that way about a lot of content sometimes. I mean, right now, you know, if you want, you can go hear the same political commentary from a thousand people. Yeah. Yeah.
Like, at what point do you say to yourself, someone's got this covered? I'm I'm probably Exactly. I don't probably need to start up, but, you know, the this whole thing. Now somebody says
There's so many fingers in the pies anyway. To get noticed when there's already a million semi famous people doing it is basically impossible nowadays.
Oh, listen. I between you, me, and everybody listening, I make an incredibly popular podcast. If I stopped right now and tried to make a different one to start over, I'm sure no one would listen to it.
Yeah. It's tough, ain't it?
There's just no way to, like, to get recognized or or to get to enough eyes to, like, create some momentum. I had, when I started doing this, I'm I'm pretty certain I'm was probably the first one to start doing it. So I was ahead already. It was the only thing out there, and I had a really popular successful blog that I could pimp the out of the of the podcast on in the beginning, you know, say to people, look, have a podcast. Have a podcast.
Plus back then, social media was actually like, those platforms actually helped you reach people, which that's not even their goal anymore. So Yeah. Yeah. They're they're not trying to help you reach somebody. They're trying to they're trying to get you to desperately try to create create an audience so they can sell that audience ads.
Absolutely.
It's a different it's just a completely different animal. If I restarted right now, I don't think 10 people would listen.
Yeah. I think I just need a scandal. That normally gets you big.
What kind of scandal are you looking for?
Well, any right now.
Like I just
Made me famous. I gotta
pop this thing up. I don't know, man. It's I I'm listen. I'm famous in a space, but outside of that, that no one has any idea who I am. And that's pretty nice actually.
Like, I can't imagine what it would be like to walk around all day long with people knowing who you are. It seems exhausting to me. Yeah. It really does. I I do it for days at a time at like events and stuff like that.
And there's this thing that happens. Like, you walk out of your room the first time and you're gonna go down to a convention floor or to a speaking engagement or something, and there's a voice in your head that that literally goes, smile. Like, even when you're walking by yourself, smile because you you you come to realize, like, someone's looking at you. And Yeah. You know, it's it's I I've I've had experiences where I've been standing in public and thought, man, my butt itches, but there's really nothing I can do about it right now.
And and you you think you're making it up, but then my wife went with me for the first time last summer to something. And we were walking around for, I don't know, half a day, and she just looked at me and she goes, everyone here knows who you are. She's like, it's ridiculous. Like, everyone's, like, either looking at you as they pass you or, like, looking back over their shoulder as you're going by. And I think she thought I was making it up.
You know what I mean? Because for all those years. And I said, no. I told you. Like, this is it's she's like, this is insane.
I was like, no. I know. Yeah. Yeah. And then I walk outside and it's over.
It's perfect. You you know what I mean?
That's how you wanna end it.
100%. Because I'm also not wealthy. And there's that old saying of being famous without being wealthy is like torture. Like, there's some sort of because you because you can't get away.
Yeah. Yeah.
I can just get away. I can just leave a diabetes thing and then nobody knows who I am, which is perfect.
Don't have to wear masks at the shops or anything.
Wouldn't that be something? I just saw a ton of pictures of, apparently, Michael Jackson used to go out in all these weird disguises, and there and I saw, like, a thousand pictures of him in all these different weird disguises. It's pretty funny.
Yeah. I think he actually got a shop built and paid actors to be normal people in the shop and not interact with him just so that he could feel what it's like to go shopping.
Did he really?
Yeah. Something like that.
Well, that's insane.
Might have to fact check me. No.
No. That's another level of, like, reason why I I don't think any of us wanna be famous. Right. But, no, it is really interesting, isn't it? That, you know, so many people have access to the possibility, and so they try all the time.
Like, I I I comment all the time that most of the people on Facebook or Instagram or whatever, in their bio, it says digital creator.
Yeah.
And I'm like and and you yeah. I used to go look, you know, and, like, there's three people. I'm like, you're not a you're not what? You you know, like like, it would be like if we all just decided we were attorneys, and everyone's bio just said attorney at law. And then I said, I know, have you practiced ever?
No. But I'm I'm thinking of it. I'm like, oh, okay. So Yeah. What is I don't know what those people are gonna do when that dream dies.
Is that really a thing people think about? Like
It's got got me on it.
Yeah. It's it's it's interesting because I didn't do this on purpose, so that's why it's confusing to me.
I think that's where where it probably you know, I think if people try too hard at stuff, unless you really, really want it, some people make it and think this is gonna be big. But most of the time, it's gonna pull the node. Yeah. Yeah. Exactly.
Yeah. Yeah. No. I didn't I didn't do any of this on purpose. Like, I just I think I just I think by virtue of maybe sharing my story of being open and vulnerable, you know, there being a pathway that started with me not knowing what I was doing to getting to having some decent idea of what was going on and the fact that I am very unapologetically just myself.
So, you know, like, I'm not trying to I must come off I don't know, but I must come off authentically to people because I know I am not censoring myself.
Yeah. Yeah. And that's the way it should be.
Yeah. Somebody was mad at me the other day because I said something, and I was like, I don't even know what you're talking about. Like, I and and I'm not gonna go look in case you're wondering. Yeah.
I don't care.
Yeah. I I I spoke I speak for an hour every day, and at the end of it, I never think, like, oh, I should cut that part out. And if I've ever had that thought, then I go, okay. Well, I'm not gonna cut that part out, but I'll be you know, I won't say something like that again. Yeah.
Yeah. It just I think it's just the only way to do this at this point. Well, especially with so many people doing the same thing and and, you know, a lot of them wanted to use, like, those big, like, television announcer voices when they're talking, and some people sound like they're doing the local news, you know, when they're making their podcasts and
Yeah. Or reading off tele prompters and stuff.
Yeah. Yeah. Yeah. You can you can see them doing it too because everybody makes video now. I'm like, you're reading this.
Like Yeah. Why don't I get an audio book? I don't need you. Yeah. Yeah.
Right. Either talk and say what you think or not. And, you know, it's funny because, you know, you and I could have this conversation tomorrow for the first time instead of today, and I'd probably say different stuff to you. Yeah. You know?
So, I don't know. I think that's really interesting and and invaluable. So tell me, like, what do you think is coming? Have you have you tried to imagine ahead three more months, a year? Like, what what do you what are your expectations?
So at the minute, I think we're still in a bit of a bubble because he's so young. We've, you know, we've got three, four years. I don't know. Yeah. Two to two odd years until he starts, you know, nursery and stuff properly.
We were gonna get him in nursery sooner, but now we're not so sure. We think we might just look after him for a bit. But at the minute, we're in this sort of bubble where we're in control of everything. But the more I listen to your podcast and the horror stories of schools and stuff like that, I'm like, oh, well, that's around the corner. You know?
Soon, we're gonna have to start thinking about neither of us being there with him and relying on strangers and that.
Yeah.
So I think at the minute, we're coasting, but as soon as that comes, we're gonna be it's it'll be the next thing.
Yeah. No. You're exactly. It'll be the next it'll be the next thing and the next thing. Does the Ipsumed pump have an algorithm, or is it just a manual pump?
No. It does have an algorithm. I checked with the doctor today, actually, because I was wondering because it it was doing things that I was unsure about. You know, there was stuff there's times where he was going high and it wasn't giving any insulin and stuff, and
I was
like, that seems weird. But it always works out. And as the days have been going on with no changes, it's getting more and more in range.
Okay. Good.
But yeah. So it's definitely learning. And, obviously, like I say, it's hard with a kid that young. We you know, for one, we're still trying new food to them, and we don't know if he'll eat any of it. And sometimes his favorite meal, he'll be like, I don't want it.
Yeah. Yeah. It's the fun part. I would
I'd say it is.
Yeah. That's why a lot of people with young kids, when they pre bolus, they pre bolus, like, a tiny amount. And, you know, just enough to, like like usually, the way I say it is there must be an amount of carbs that you know for sure he's gonna eat. Like, at least pre bolus for that amount. And then once you see him eating and he's okay and it's happening, then you can put the rest in as fast as you can.
But, you know, just to stay ahead of it a little bit. But No. I know. I know what you mean. Like, you make something for a kid, they're like, yeah.
Yeah. Yeah. Yeah. And then you put it in front of them, like, no. And then that's you know, like, then you have that fear of, like, oh, the insulin's in.
Like, what do I do? But Yeah.
Pre-bolusing a toddler, and coming back in a year1:10:41
And and for a while, our diabetes team was saying first, they wanted to pre pre bolus everything, obviously, but then they were saying because we were struggling, we were pre bolus, and then he wasn't eating. And then you're trying desperately to get someone in him before he starts going low. Mhmm. They they said to us, for stuff you know, he'll have, like, his milk and that prebolised. But if it's a new meal or if it's a meal, he might take, you know, half an hour to eat playing with it, then just bolus as soon as you give him the food.
And that definitely worked while we were sort of trying to get more foods that we know that he'll eat. Mhmm. Like peanut butter on toast, that's a guaranteed He'll polish that off now. So that's a good one to have for breakfast. Awesome.
Yeah.
Yeah. That's see, that's a great way to just do this. Just common sense, pay attention, learn from, you know, the past, and and apply it to the future and and move forward. I'll I'll tell you seriously. I'll say it again.
The bold beginning series in the podcast, that'll help you. If you listen to that, it'll it'll help you, like, bring your ideas, like, you know, full circle and and give you some good starting points. Man, wow. Jeez. You're right at the beginning of this.
You're making me feel old, Tom.
Is there some flashbacks?
Yeah. No. You're making me feel old. It's it's not pleasant. So
I'm sure you're not old.
Trust me. I'm old. You don't say it on the podcast because it turns people off, but I'm gonna be 50 I'm gonna be 55 this summer.
So That's that's not old by today's standards.
Well, I got the GLP now. I can live forever. There you go. Yeah. Yeah.
It's all gonna be fine. What do you so you've it's so interesting to talk to you because you really don't even know what to imagine yet.
No. I suppose it's still so fresh, and I wondered about even saying, should I, you know, share my story this early on because I don't really know anything in the grand scheme of things. But I I sort of just wanted to come on to talk about it. So I heard some of your other guests talk, I was like, I think this would be a valuable bit of entertainment for some people. Well, not even entertainment.
You know? Just
It's interest.
Something good to hear.
Yeah. No. I I agree with you. Also, it it gives us an opportunity because I'm not planning on not, you know, stopping doing this anytime soon. Like, it's a good opportunity to say to you right now, like, go pick a go take that link I gave you and go a year ahead on the calendar and drop yourself on the schedule again because it it would be interest yeah.
It would be interesting to hear you, like, walk through this. Yeah. You know what I mean?
Absolutely.
Yeah. Yeah. And if my calendar doesn't go ahead that far, just reach back out and, you know, at the end of the year, and I'll be able to it'll open up for the following year. I'll give it to you then. But, yeah, you should yeah.
Come back in a year. I'd like to hear what what you figured out, what's changed, and just do a check-in with you. And maybe we'll maybe you and I'll do that, till the end. We'll get you that way you can start streaming.
This is such a weird reference, but have you seen on YouTube? I think it's for variety or something. Billie Eilish does the same interview with the same questions every year.
I don't know that, but that's a great idea.
It'll be a bit like that.
Yeah. Yeah. No. That's a
Every year, we'll check on Kylo, how he's been.
Yeah. No. It's a it's a great idea. When does he how old when he turns into Darth Vader, when does that happen?
Well, you know what's so funny is his initials spelled k l l, which is almost the word kill, and Kylo kills his dad, spoilers, in Star Wars. So that was already a worry. But then when my wife let me pick his middle name, I picked Loki because I thought that was a really cool name.
Okay.
And in the Marvel films, Loki gets his mom killed. So I screwed us.
You just think, yeah, eventually, he'll just be in the house by himself and you guys will be gone.
Yeah. Exactly. Yeah. It'll have taken us both out.
Just be riding the dog. Yeah. Oh, by the way, you don't have a dog, do you?
Oh, I wish.
Oh, don't get a dog. Tom. Tom, you don't you don't have the time for that. I I know you think you do, but you don't. Trust me.
No. Do know that that was one thing because we work long hours. We only do four days a week, but we work long hours to make up for it. And I couldn't imagine leaving a dog home for twelve hours a day on its own. It's just not fair to the dog, is it?
We're going to a friend's graduation tomorrow. And last night, I looked at everybody. I went, what what are we doing with the dogs? Like, I was like, wait. Did anybody think about this?
And, yeah, it's it's just it's too much. They're too much. I love my dog. I use awesome. And even the other one's not bad.
But, man, like, being responsible for things is it's tough. And when they're little, it's fine. Like, you just leave them home. They're fine. Like, you know what I mean?
You come back a couple hours later. It's okay. But Yeah. I you know, I've had to leave picnics to go home to, take my dog out. Like, everybody's, like, having fun on the July 4, and you're like, oh, probably that's not a big holiday for you guys.
But but then yeah. Then, you know, like, oh, you drive home, get the dog, take him out. You're like, oh, this is not it doesn't make up for it. I don't know. Maybe.
No. I think it's more of like in your head, it's a nice idea to have a dog because you see it on the movies with, you know, people having a dog that is really smart and that or really fun. Mhmm. And then you just get a dog and it's just a yappy little thing Yeah. That you have to look all the time.
I'll tell you right now. I'm looking up. I have a lizard in a cage, and he's got a misting system, and I could leave him for days if I needed to. And just somebody has to bop in once in a while, throw a couple bugs into a cup, and and he'll be okay. So Yeah.
He has been searching around the entire time you and I are talking. There's a a rogue cricket in the cage, and he is just picking through every ounce of this enclosure trying to figure out where that cricket is. And I hope he finds it because it was really loud last night when I was sleeping. So
What type of lizard is it?
Well, Tom, let's not embarrass me by going over all the ones I have, but the one I'm talking about right now is a yellow tree monitor.
Okay.
Yeah. And she is she's hungry. Like, she's doing the, like she is searching that that enclosure right now looking for something. So I'm gonna go give her something when we're done. But I also have a Parsons chameleon.
I have an Mbanja chameleon. I have these little, like, Japanese, they're called Tachydromis. They're like these little grass lizards. They live in, a little community together. They just run around everywhere.
And
Sounds like a rainforest.
Yeah. There's a couple of enclosures in here with a lot of tree like, trees and growth in it and stuff like that. It's my only ability to be outside while I'm in here making this podcast. But they're gonna move they're gonna move with me to my new my my new space
Oh, lush.
At some point. Yeah. It's gonna be nice. I'll I'll get pictures up at some point. So people I
always thought about keeping a lizard, but my mom, I don't think we had a lot of pets growing up, but I don't think a lizard would have been one she would have been too happy with. Some of them are
very slow moving. So if that's a if that's an issue, like, parson's chameleon, he's just staring at me. What's up, buddy? Yeah. He wants me to bring him a roach, and then he wants me to leave him alone.
These are his whole goals for the day. So he's just seated in a in a, like, a canopy situation on a branch, and he's just been looking at me for, like, an hour now. I'll I'll bring him I'll bring him a bug. He'll eat the bug, and and he'll be good to go. But some of them are very they're just very slow, and they they live a really interest I find them relaxing, and, it makes me, you know I don't know.
It's I feel slower when I'm in here with them. Like, calms me down a little bit. So
Yeah. Your Zen.
Yeah. Which I don't have, generally. Like, when I walk out of this room, I'm I'm working on a I'm working on, like, a twenty one day, like, guided program, like, a kind of a thoughtfulness program through diabetes. And, like, I'm gonna go sit down and start working on that again, and then I'm gonna lose my whole day on that. So Yeah.
It's a thing I'm I would like to offer people for free, you know, where they can just kinda pick it up and and kinda take, like, step through twenty one days of ideas from the pro tip series. So Sounds good. Yeah. I've been working on that. So we'll we'll see.
But in here, nice and calm. Anyway Yeah. You were awesome, Tom. I really appreciate you doing this with me. Thank you.
Oh, thanks. I appreciate you having me on.
No. No. Of course. I didn't know you're gonna have such a good microphone or we could have done it sooner. And and for everybody else listening, this is what you're supposed to sound like when you come on the podcast.
Nice and clear.
Should we do an advert for Blue Yeti?
Is that all it is today? Look. That's a very affordable little microphone. They've been around forever too.
Yeah. They're, like, £80. They're not bad at all.
No. That's what they've cost forever. Like, that's even even that's nice. They must just oh, they're just selling them out there to all those people who think they're gonna be digital creators one.
Yeah. Exactly. In fact, I think I picked it up off eBay. I think it was, like, £50 or something.
Yeah. Yeah. You picked it up off the sad guy who realized that his his Yeah. Little bustling gonna work out.
Just put a notch in it for each creator that didn't make it.
That'd be great. This thing gets passed around the world. It's just got little sad eyes on it everywhere. I really thought people were gonna be interested in my, insurance planning podcast, but they just they didn't I I don't know. Was it was such important work, but nobody cared.
We do see what happens next. Oh, yeah. Yeah. The Internet's gonna change so much in the next five years. It's gonna be crazy.
So anyway. Alright. Hold on one second for me. Hang out here for you because I'm gonna talk to you after I hit stop. Okay?
No worries. Thanks.
This episode of the Juice Box podcast was sponsored by US Med. Usmed.com/juicebox or call (888) 721-1514. Get started today with US Med. Links in the show notes. Links at juiceboxpodcast.com.
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#1909 Life Over Numbers
Life Over Numbers
Her son was hours from a coma at diagnosis. Lockdown took his freedom, and a letter asked for help. How one family found its way back — life over numbers.
Jump to a moment
- Active kids can mask type 1 for months. Priya’s son arrived at the ER with sugars of 44 mmol/L (roughly 800 mg/dL), ketones past four, and hours from a coma — after doctors had repeatedly waved off her concern. Trust your instincts.
- Lockdown isolation plus lost autonomy hit her son hardest about a year after diagnosis. He asked for help the only way he could — a letter to his mom. She calls it one of the worst days of her life, and the moment everything got reprioritized: online therapy, a full work-from-home job, and constant communication.
- Taking the burden off the teen changed everything — once AndroidAPS was running, Priya slept properly for the first time in three and a half years. Her advice: caregivers need their own care plan, not just the child’s highs and lows.
- “Basal is literally the unsung hero.” Re-test basal after growth spurts, get settings right before blaming the pump, and head into sports with as little insulin on board as possible.
- “Life over numbers” — her son manages mostly on his own now, and the outcomes away from home aren’t perfect. That’s okay. Small experiences, even the ones mom saw coming, are how teens learn to own the space.
- AndroidAPS — The DIY automated insulin delivery system Priya's son uses with Dexcom
- Lifeline Australia — 24/7 crisis support in Australia — call 13 11 14. This episode includes a discussion of a teen's mental health crisis; support is available
- 988 Suicide & Crisis Lifeline (US) — For US listeners — call or text 988 for free, confidential support
Every word of the conversation
Welcome0:00
Hello, friends, and welcome back to another episode of the Juice Box podcast. If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me.
If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast type one diabetes on Facebook. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. This episode of the Juice Box podcast is sponsored by the Omnipod five. And at my link, omnipod.com/juicebox, you can get yourself a free what I just say?
A free Omnipod five starter kit. Free? Get out of here. Go click on that link, omnipod.com/juicebox. Check it out.
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Meet Priya — Six Years Into Type 11:42
Hi there. My name is Priya, and, I'm a mom to a 17 year old type one. And, we joined the type one family around a little over six years ago.
Six years ago. Your daughter or son?
My son.
Your son. How old is how old is he?
He's, 17 now.
Now. Okay. Wow. Are there other, type ones in your family or other autoimmune issues or anything?
No. He's the first one. First type of the rank.
And do you have other kids? Just one. You have this one. Okay. So he's around 11.
What do you see happening? What gets you thinking about him not that he might not be feeling well?
He was quite an active oh, he's always been quite an active kid, and he used to be involved in soccer and taekwondo. So he had his taekwondo grading veins, and I'm like, he's he's lost weight. But, okay, maybe he's been too active. We're going into holidays. I'll feed him like there's no tomorrow.
We're going to school holidays, and two weeks and three weeks, and I see he's starting to drop weight. And I'm like, something's not right. Let's go to the doctor. The doctor is like, no. Should be fine.
You're just being paranoid. Nothing really happening. It was around the time when COVID was just appearing in the headlines. So I'm like, yeah. Maybe it's sad.
Maybe he's unwell. Alright. Okay. Three weeks in, and he's he dropped about ten, eleven kilos, which is, like, what, maybe 20, and that almost small little boy looks really gone.
Yeah.
Keep going back to the doctor, and they're like, alright. Cool. If you insist, we'll do some tests. But look. He he looks okay.
I'm like, no. He doesn't look okay. And, yeah, the reports come. They they miss the most obvious. They don't check for sugars or anything else.
And I'm like, go in the evening for the review. Actually, like, look. You know what? I'll give you a referral. Maybe now a couple of weeks, he'll be fine.
But then if not, take him to a pediatrician just to keep your mind at ease. We come home. I'm like, no. Let's go to the ER. Something's not right.
Now my mind went in a very different direction. And I said three weeks, such a drastic weight loss. Something's not right. Let's go to the ER. I'm sure I'll get some support there.
Described the symptoms to the triage nurse. And, like, in thirty seconds, they literally grab hold of him, and he they I remember the words they say. Things like get get the ER bed ready, endo on call. I'm like, what the hell is happening here? And yep.
That's just history. We were in DKA.
DKA at Diagnosis — Hours From a Coma4:39
Hey. Going into the hospital, what did you think was wrong with them? What were you imagining?
Oh, so I had I had a few friends of mine while screwing up who had some aggressive cancers and, like, literally disappeared from the face of earth. So that was the first thing that came to my mind that, oh, what's going on here? Oops. I'm sorry. I swear.
But oh. You can can swear if you want. Don't worry.
Sorry. So, look, honestly, that was on my mind. And as a teenager, I had a friend of mine who, again, four weeks, brain some some brain tingle and goodbye. Yeah. That was really driving me nuts.
And so when they said it's not that and it's diabetes, I actually sighed relief that, okay. We can manage this.
Okay. Where, where you where do you live?
I'm we're currently in Australia.
Okay. How is the how how do you find the health care there?
Good. When when you go to the point wherein you go to the ER and it's a really life threatening situation, damn good. But for anything else, you need to you need to have really good insurance cover, to be able to afford private. Otherwise, for anything that's not life threatening, you're waiting too long.
Okay. Alright. Well, that sucks. So okay. Well, they, was he in DKA?
I mean, is it a thing you found pretty quickly? What was this day like on Monday?
Look. His sugars were 44. His ketones were past four. Yeah. They said, look.
He he was probably hours away from coma, and they weren't actually interested in getting his sugars down as much as they were interested in normalizing his potassium levels. Yeah. Because that's what was going in the towards the dangerous territory.
Right. I think how do they talk about, like, like, you're acidic, right, or something like that? Or there's something they have to Yeah.
And and if they bring the sugars down too soon, the electrolyte imbalance can actually have a more negative impact on the body. Mhmm. And so I think over a span of about maybe the first seventeen, eighteen hours, they got him down to twenties.
Okay.
It was a very gradual trickle down.
Yeah. I for people listening who don't know, 44, millimoles is just about 800. Yep. Yeah. So for for you in American and other places.
So yeah. And how long do you think it had been going on for?
I retrospectively think it was going on for at least seven, eight months.
Oh, wow. That's
Yeah. So he, he went overseas, for two weeks by himself, school camp, two weeks to Japan. That photo that I'd taken on, at the airport on the day, oh my god. He had that gaunt look. And I which is why he didn't have a honeymoon period at all because he was running literally on empty on this file.
Do you with hindsight, would should you I'm not trying to make you feel guilty. I'm just trying to understand the depth of it.
No. 100%. I should have.
You should have seen something.
You don't even have 100%. But the thing is he's such an active kid, and and I think he was bouncing back. And the activity now on hindsight, when I understand that there is insulin sensitivity that comes out like crazy when you're so active, he his pancreatic cells were, I think, getting a lot of, rest just for the activity driven insulin sensitivity.
A lot of people talk like that. Like, I was super active. I think it bought me more time, that kind of thing. Jeez. How did he take it at 11 years old?
Okay.
So
the diagnosis part of it, I think he took it pretty brave. He he started his shots immediately. He's like, no. No one's no one's touching me. I'm doing all the shots myself.
And the the only one who was allowed to basically interact and manage was me. So he and I had a really good wavelength even prior to diagnosis, and it's only strengthened since then on. But look. Going back to school, we tried to keep his routines as normal as possible. We continued with soccer because that was his life.
The only question he asked the endo the following day is, will I be able to play soccer? And he's like, yeah. You'll be able to do whatever you want, including flying a plane. I don't know why he said that back then, but he said, yeah. You'll be able to do whatever you want.
And that's what gave him the confidence that, okay, it's not the end of the world. I'll be able to get back to the field. So that told me that come what may, soccer needs to be a part of his life. So I need to work this out to the point that he continues business as usual for him.
Definitely easier than getting him an airplane. That's for sure.
Yeah. Definitely. Yeah. But the the thing is it happens at such high frequency. It's like he's trailing six days a week sometimes.
Right. Right. Hey. Does that put it into his head? Like, you said you don't know where that came from when the doctor said even fly a plane because they're trying to pick something that they think of as, that people think they can't do with type one.
But does your son now talk about being a pilot ever? Oh, never. Never. Okay. Alright.
I just I'm wondering how many doctors are making little type one pilots by telling them stuff like that.
Not at all. He's like, I'm gonna, earn all this, ridiculous amount of money, and I'm gonna be flying business class. I'm like, dream on, pal. Come on. Get the bloody ball and the goal first.
Yeah. Just you know, why don't you work on this soccer thing? And once we do this, we'll move up to something else.
Yes. Exactly right.
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Why Priya Came On — Normalcy Does Return12:45
Well, what made you wanna come on the podcast?
A couple of things I wanted to talk about. As I see, like, reflecting on my own experience, in the initial diagnosis phase or yeah. And when I say initially, it goes on for the first two, three years, till you wrap your head around so many things, was the uncertainty. And how do I put it? You see all these posts online, and you're like, oh my am I ever gonna get there?
And I just wanted to provide my insights on, yes, you're gonna get there. It's not gonna be pretty. It's gonna be ugly. It's gonna have dark circles. It's gonna have what the hell am I doing kinda days.
But then, yes, you do get there, and normalcy does return.
It's like running a like running a marathon with no shoes, and you're and you're bloody and and exhausted. You pooped your pants a little bit, but, you know, you get you get to the end, and you're like, I did it. How about that? Oh my gosh. Yeah.
How long do you think it took you to get to a place where you felt like even that you were kinda cresting that hill? Like, thinking, like, oh, maybe there's some, like, light at the end of this tunnel.
It came in phases, to be honest with you. When we were on MDI, I think, we had some really good control, that got some confidence in. Then we moved on to different kinds of pumps that got some more autonomy in. I think maybe around the two or a three year mark is when, things started, like, you know, this is it. It's not going anywhere.
So
Two or three two or three years?
Yeah.
Okay. So Well, oh, let's talk about the time leading up to that then. Leading up to two or three years, how how did you feel? Like, can and was it in did it happen in sections? Did you progress once in a while, or was it just one drudgery that you can't tell one minute from the next?
No. It wasn't definitely one drudgery stretch over time. For me, I was a primary caregiver, so it was the constant exhaustion of holding the fort and managing decisions, managing the household. That's what got to me, I think. Seeing the toll that was sometimes, taking him by surprise.
I think the first year, we we breezed through. And not having a lot of honeymoon period was kind of better because the honeymoon and the lows were really throwing us off. But I reckon in combination with COVID, all the shutdown, being in social isolation is what didn't go well for my son. Okay. And that drove him to a point wherein it was like, that's it.
I don't think I wanna continue this anymore.
The Hardest Chapter — His Letter Asking for Help16:05
Did he that was Did he feel suicidal at points?
Yeah. Really?
He did.
Wow. So Did And that took me by surprise. Sorry.
No. No. No. I'm sorry. I didn't realize that the conversation will go this way.
So he's 11. He's diagnosed right at the beginning of COVID. Right at the right around the point where my wife was telling me, there's people sick overseas. I think we're all gonna have it one day, like, that that time. And then and then what do you mean by the like, what what what parts do you think got to him?
Was it the psychological, I don't want this to be my life, or was it more about the process of what to do? Were people making fun of him? Do you think do you think he even would have felt any of that stuff if he was out moving around the world? How I mean, you've obviously had time to think about it. I'm wondering what you've come up with.
Yeah.
Look. I think if he continued business as usual, it wouldn't have had that impact on him, But his routines were taken so look. This diagnosis does cause kids to mature overnight. They take the autonomy away from the kids. And a teenager or a preteen, they're all about autonomy.
They're all about making decisions themselves. And for an active kid to not be able to get up and run after a ball because he's got oodles of iob, that was something I think that got to him. Again, we couldn't step out. We had some ridiculous restrictions about five k is not here, not there. We had more shutdowns than I think any other state in the world Mhmm.
Which I think was a big contributor to him withdrawing in a shell
Yeah.
At that point in time.
Yeah. Australia really didn't mess around. Right? They you guys were you were stuck in your house. You went outside.
The cops came and got you. Right?
Yeah. Well, maybe that's a story that went out, but, yeah, it it pretty close.
Yeah. Okay. Well, it's it that's how it felt, though. You really felt like you couldn't leave your house. Like, I used to go out all the time.
You you know, like, you'd, like, go for a ride or you'd go to a store that you had to go to or something like that and, know
Look. There were instances that people were dropping on each other, which was pretty. But eventually, people just got fed up and, started doing what they were doing, but that that took its own sweet time.
Yeah. It certainly did. So in that time, he's isolated in your house. Also, an only child. Right?
Yeah. Then you and your are you married?
Yes. I was back then. So yep.
Okay. Well, we took care of him. But but, like, but but so so so you I hate you're laughing because that is what happened. Okay.
Stop it.
I can't wait to find out how COVID ruined that. But but so but the three of you are in that house by yourself, and then and he's got nobody his age even. And you two are probably working from home. Is that right? Or is one of you working from home?
One of, so I had a bit of flexibility back then, but then we were primarily site based. So we continued going in and out, trying to manage our shifts in such a way so that someone was at home at all points in time.
Yeah. Yeah. That's not good. I have a an acquaintance who, as soon as COVID hit and the lockdown happened, he said to me, I'm gonna get divorced. And I thought and I was and I I thought he was joking.
You know what mean? Like, I thought he was being like, oh, no. We're gonna get trapped in the house, and we're just not we're gonna fight. This guy had been married forever and ever and ever. Like, he was older.
You know? And I couldn't figure out what he meant, but it turns out what he meant was is that the ladies he had on the side probably weren't gonna understand that he couldn't come out anymore, and then that was gonna become a problem. And he didn't feel like he was gonna be able to not do it, and then eventually he'd get caught. And by the way, all that happened. So Oh my
Classic. Love it.
It's so funny, like, when something like, you know, COVID hit. Like, I was, right away, was, oh my god. Where how are we gonna get our food? What are we gonna do? And it's fun to think that some people are, like, how am I gonna get to my ladies?
And, like, isn't my wife gonna notice now when I call these girls? And, like, if I can't go to work and I'm not gonna anyways, is that what happened to you or what happened to you?
Okay. Going back to no. Nothing of that.
Okay. You
mean the relations shift side or what are we talking about here?
Nothing that much fun happened to you.
No. No. Nothing of that sort happened.
Alright. Sorry. So when so what could you see happening? Like, did you over focus on him? Was he spending too much time thinking about his diabetes?
Do think he had spent too much time in his own head?
I think it was the latter spending a lot of time in his own head withdrawing, and not not being his usual self. And and, you know, as a parent, like, you know, what's what's the what what does normal look like? What are the extremes? And then when you're going past the extremes and, look, I'm very grateful that we we had good communication to begin with, and he he actually wrote a letter to me. And he said, look, I don't think I can talk to you, but I wanna tell you something.
And could you please read this when I'm not when I'm in one of my online classes, etcetera? And I'm like, yeah. Sure. And that sinking feeling when you have this chat, you're like, oh, I don't know what am I getting into. Yeah.
And that's pretty much it what it was. And he had described it that, like, this is what I'm thinking, so on and so forth. And I don't mean to, but I don't think I can continue anymore. I I, that was probably one of the worst days in my life.
I would think. Yeah. Preet, he was 11 when this happened?
No. He was probably around 12, 12.
Okay. By then. So he had been been with us now for a year, year and a half. And Yep. I knew
that's when it hit him.
Such an articulate thing to do at that age. Like, how do he Yeah. I you know, how do you know to do that, do you think?
I have no clue. See, he's he's always been quite, a mature soul. We call him the, old man at home. Okay. And he's always been very sensitive, very thoughtful, and this was his way to, I think, ask for help because he somewhere obviously didn't wanna execute that, and he didn't he was he was covering it up.
He was holding the fort.
What Priya Did Next — Support, Therapy, Stepping Back22:40
Right. Right. What did you do? Like, when when you mean, after you read that, I imagine you cried. But then after that, what did you do?
I reached out a couple of girlfriends, type one moms that we used to talk to, literally 2AM at nights when we were doing our finger pricks and not getting the right outcomes. And I I reached out to them and said, this is what I'm dealing with. What do I do here? Got a bit of support from them. Honestly, what I did from their own reprioritized everything, took a backseat, focused on them, started reading up things, started looking at therapy options, realized we don't have good therapists over here.
At least back then, we didn't have a lot of therapists easily available. COVID made things even more harder. We found a therapist in US, and we consulted him online just to get things under control. Wow. I quit my job at that point in time and took another job, which gave me a full 100% work from home option.
Okay. And I needed to be there Yeah. Just to ensure safety till the time we navigate through this phase.
Yeah. Did this I'll be serious now about the other thing, but did this put a strain on your marriage?
Not this in particular, but I would say chronic diagnosis does put a strain on caregivers, partners. Right? Because we're we're constantly in that operational phase of cup counting of your whatever. I mean, so many other variables that throw that. I don't think, we take time to think about ourselves and what do we need Mhmm.
As a as a couple.
I remember being in the hospital a few days into Arden's diagnosis, and we were in some class. I don't know if it was carb counting or just, you know, like an educational class. Mhmm. And I realized that that all the moms were sitting around. There's a big conference.
A lot of people had been diagnosed, and I would bet you there were eight families there. And, like, all the moms were sitting around the table, and the husbands were standing behind them. And I was seated at the table. My wife was stood behind me. I real and because because I was a stay at home dad at the time, and I and that I I didn't realize that in the moment.
Actually, it's a a thing that struck me later. But we walked out of that room after getting the, you know, I don't know, the education we got, And we're walking through the hallway going back up to Arden's room in the hospital, and my wife says, do you think she'll be able to have a baby? And she was only she was only two. And I said, I don't know. Do you think we're gonna get divorced?
That's that that's that's how it felt when we walked out of the of of the education. You you know? Anyway, it it just it's such a shift for every every every direction your brain works in, everything you think is happening in your life, etcetera, just all stops and and and fractures and and goes into a million different directions. So my question is is do you think prior to diabetes happening, do you think this is ever a note you would have gotten from him? Like, if he doesn't get type one, does he write that letter to you?
I don't think so. No. I honestly don't think so. He's quite a fun loving, resilient guy, active out and about. But, look, not not wanting to talk about
About that. You know?
That.
You know what? Can you tell me, though, before we move on, like, what do you know what part of it what part of it was troubling him? And, like, how and what did you do to, like, to mitigate it?
Freedom, Autonomy, and AndroidAPS26:28
So, what I realized is the as we kept talking about it, he had made peace with the fact that this is him, but not totally because he needed the the freedom to be able to do what he wants to do. Okay. And the and he wasn't getting that and was being held back. And, obviously, look, we would have had some conversations to say, okay. No.
Not yet. You've got so much IOB, so on and so forth. And maybe, we need to start planning things better. And, again, when you're exhausted, you're the most articulate Mhmm. Or emotionally aware people around each other and go goes both ways.
I think, communication was the key for me here to keep talking. Let's let's talk what's happening, what's what's going on, name it, and let's let's try to work, it out. For him, it was freedom to be able to do. And that's where I think we we took the next step and went into the algorithm side of things and the DIY side of things. And I would say taking that burden off him, putting it on autopilot I actually slept after three years for the first time, three, three and a half years once the loop not the loop.
Sorry. Android APS was running. Yeah. Was a different person after sleeping.
Yeah. I know.
So, yeah, that's that whole cumulative effect just changes you as a person.
I try to tell people, and I don't think anybody believes me when I'm saying it sometimes. You you know, like, it really does just creeps up on you. You don't feel it coming. And then one day, you are just a vastly different person than you were before. You're having very strange reactions to things, and the whole time you think it's reasonable.
Really is like it's not you you don't think, oh, I'm acting crazy right now or it's just not how it feels. You know? The the lack of sleep thing is is is very, very impactful. So you got Because
you are in
Go ahead.
I'm sorry. Hugo?
No. No.
No. I was saying because you're in a crisis mode, actual and perceived. You're throwing your body in a crisis mode as well Mhmm. Just by running on empty. And it it all has a magnified impact.
It doesn't have to be that bad, but the thing is we don't create as much awareness. And and I I would say these things need to be a part of the diabetes care plan, not just just managing your highs and lows. Parents need to have their own care plan for them to consider what are you gonna be doing. This is what you're gonna be coming up with.
Sure. You know, otherwise, everything just kinda falls apart and your life heads off in a direction that it doesn't need to. But you but you do have to be aware of it. And and and I think the awareness being upfront is helpful because by the time you get exhausted, I don't know how you're even supposed to think about that part. You you know, like, how do you start how do you start looking after your mental health after you're exhausted?
It's it's it's you know, it it adds another layer.
It's counterintuitive.
Yeah. It certainly certainly is. So okay. Well, you said you got a therapist in The US. Is he still seeing the therapist, or is that a thing that was just took care of something and you and you move forward?
I think it was just at that point in time to help us tide over that period. And we we started then doing work ourselves on what matters, what doesn't matter. And I I think since then, we've we've been on the bend.
Okay. Yeah. And you did you keep your work situation the way it was? Did you decide that was the way to do it?
No. I went loopy working from home. So after things, more loopy, let's say. Yeah.
No, Scott. I lost my mind. Thank you for asking. Yeah. So You head back to work at some point?
Yes. Absolutely. Because I think as much as I say I'm an introvert person, I still need to bounce off people's energies. We need to see people. I mean, after all, we are social beings.
So Yeah. Yeah. I had to once the lockdowns were lifted, he went back to school, had some structured routines back. I'm like, alright. Cool.
Now I can back off. Mhmm.
Okay. Oh, it's awesome. And he does well for himself. I imagine he manages his own diabetes mostly?
Yeah. I of now, he I would say I am maybe 20 or 30% involved. It's all on him, and he's like, no. I got it. We're fine.
Yeah. That's awesome. What is he still using Android APS?
He is. He is. And I don't wanna change.
Yeah. It works well. You like it. Yep. Awesome.
Awesome. With that is that with Dexcom or Libre?
With Dexcom.
Dexcom. Okay. Oh, that's cool. So if I asked him now to describe his life with diabetes, do you think he'd just say like, how do you think he'd he'd characterize it?
He'll just roll his eye up and be a typical teenager. Like, what's there to talk about it?
Yeah. Nothing here. That's pretty cool. That's it. You know what?
That's really great, isn't it? To to see how far he's come. Yeah. Yeah. Yep.
How Mom Is Doing — and Letting Teens Learn31:41
About you how about you though? Like, what's the what's the mental health aspects for you? Like, he he says just diabetes, but do you do you do you have you gotten to feel that way, or are you in a position where you still do you mourn something? Where are you at with all that?
Look. I think the mourning part, has dwindled a fair bit, but it's it's never gonna go, is it? No. It'll be so. You you never, you don't give birth to a child thinking, okay.
This is gonna be the first eleven years is gonna be awesome, and after that, I'm going to be
A zombie?
The mom to a
Yeah. Yeah.
Yeah. A zombie and a mom to a type one. But, look. And and again, that's that's life. It doesn't come as a straight line.
So I wouldn't say I'm mourning, but, yes, it does hurt. Some days, it does creep up on me.
Right. Yeah. I I find it's when something happens that it just feels, like, wholly unfair maybe or that, like, you see something happening to her that I just think, like, oh, this isn't right. You you know? And and then that feeling when you get to the end of it where you're like, oh, there's nothing I can do about this.
Just you know? Yeah. And then it all becomes about how you manage your your expectations and your you know, every and everything else that comes with that. It's a it's a balancing act. I don't think it stops.
I mean, if it I hope it makes people feel a little better to know that it's probably a thing that you'll recalibrate every once in a while. You know, kind of Yeah.
It's sorry. It's just like, literally, you know, every four and a half minutes is gonna be five minutes, flick of a wrist. Okay. You know what? It's trending well.
Okay. Continue business as usual. No further action required.
It'll be okay? It'll be okay? We just had a conversation, like, yesterday where we were heading out and I said, hey, Arden. Listen. I don't really wanna get in the middle of your business here.
I said, but, yeah, that pump site is is going bad. And, you know, it's gonna expire in, like, six or seven hours anyway. You know, we're we have this whole day. We're planning. There's food later.
I really think, you know, you should change your pump. And she's like, you're wrong. And, like, there's part of me that's just like, I I know I I'm a 100% sure that I'm right. And I and I and I know that I know why I know all the excuses or reasons she's gonna come up with about why I'm wrong. And I ended up I ended up being right.
And there's no joy that comes from that at all. Like, all I found myself thinking is I wish we did not have to have that conversation.
Yeah.
You know? Feels like it takes a little piece out of our relationship every time every time we do.
But, honestly, Scott, I think, they they need to go through that experience. Like, you've you've seen that that pattern for, I don't know, thousands of times. I've seen that pattern maybe a few hundreds of times, and you you you can preempt what's coming. But the thing is, as a part of handing over the reins to them, they need to start seeing these patterns and say, okay. You know what?
This is what happened, and mom was right, and this is what happened. Thus, let me act now rather than wait. Two minutes now is gonna save the entire day. Right. Not just day I'm about.
It was gonna be this. I asked that, by the way. I was yeah. I Yeah. But it's hard not to say, like like, I know I'm right or trust me.
Like, it's all that. It's just kinda difficult. You just sorta go, like, you know, like, okay. Well, we should do it anyway, you know, and let's see how it goes. Mhmm.
It's but I'm sorry. I cut you off. You're gonna say something.
No. I was just about to say, I think one of the best things, we as parents can do is also to step back because, ultimately, they need to start learning and owning the space depending on, obviously, age and other variables related. And when it comes to some nonnegotiables, we are still the parents, but I think these small experiences build a lot of confidence in them as well.
Yeah. Yeah. Oh, I think so too. And and I take your point. Like, they I have those experiences, so I see it coming a mile away, but she needs to have them too.
Or Mhmm. Or she's not gonna see them coming a mile away. And one day she and I and I know she will. By the way, she you know, taken out of context, I don't know how this would seem. She's doing fantastically.
You know? And
A 100% sure she is.
Yeah. Yeah. Yeah. And I'm I'm thrilled how well she's doing. But it's tough too because then sometimes when you bring something up, all that I'm thrilled about how great you are, it gets lost.
You know what I mean? And and and everything feels like, oh, I'm I make mistakes or nobody believes in me or, like, you'd be surprised how quickly it could, like, slip into that direction. So really something is your son still playing sports?
He is.
He's and and how does he manage on his own pretty well, I guess?
Soccer With as Little IOB as Possible36:28
So the key that we've learned, thanks to the podcast, is, going into Bazel, going into a game with as little IOB as I can.
Mhmm.
Especially when it's the practice sessions, very little IOB. And when it's a hard game, I'm on the sidelines using his phone and bolusing. So And and that that really sorry. You go?
You said even especially in practice sessions, you mean because the the adrenaline is not the same as it is during a game?
That's right. Yeah. Okay. Yeah. It's it's hilarious to see, like, he's he's going for the run.
So he's he plays a and a winger position. And then he's going in literally for the kill, and he doesn't get it right, and the coach is shouting. You can see the straight arrow up in the next refresh. It is so hilarious to see that. And I say that I'm not a main person, but I'm like, okay.
I I should have expected that, and I should have done something about it.
At least you know he's trying. He he's out there and he cares. Right? Putting some real effort into it.
Yeah. He
will he leave for university, or what's the plan moving forward?
So he actually wants to go overseas and have a go at soccer. So that's, and the only bargaining point is, okay. Complete your year 12, get your VCE done, and then let's talk about it.
But is he that good, or is he just delusional?
Okay. This is be going online, but I would say, look. There are many other better people there. He he wants to try his luck.
That's okay. Something good about that.
He he's not bad. He's not bad. Yeah. But then, I think he wants to take a punt.
Okay. I'll tell you right now. I've said this before. I don't think he'd mind me saying it. My son was younger.
If you looked at the teams he played on and said, hey. You know, pick the kids who are gonna play college baseball for four years. You I don't think you would have chosen. You know? And you you don't you don't know what's gonna happen, especially when they grow, like, at the end and that Yeah.
You know, to get that that whole, like, man physique going when they're 18 or 19. There's a lot changes. So very, very cool. Well, good
for him. It's just I I'm like, let's see.
Yeah. Is that a thing you actually think you'd let him do?
Look. I'll have to cut the cord at one point in time. Yeah. And, I don't know.
Chris, like, just
hope he's not
that good. I maybe
Hello. Maybe.
I'm just waiting for him to figure it out, Scott. That's all.
He's gonna hate me when he
hears this. Of course not. No. No. I I think he should you know, people should follow their you know, like, it's easy to tell people to follow their dreams.
There's part of me that would tell you maybe pick something you're good at and do that. But, you know, if you have the opportunity to follow a dream, I don't see the harm in that at all. You know? Yeah. My son says over and over again, he's not sure he would've went to college without baseball.
And it's something that's served him very well since he's done it. So, you know, it would have changed the course of his life greatly. You just gotta follow your heart a little bit. You know? So you and I I feel like you and I have known each other online for a long time.
Is that true?
That is 100% true. Yeah. I have reached out to you so many times. You've you've pointed me to the right, episodes, etcetera. So yeah.
Definitely. I have been in the group as well for some time. Yeah. Not not as active off late due to a few things, but then definitely been there.
Finding the Podcast — 'I Wish I'd Come Sooner'40:02
Awesome. What what how did you find the like, what value did you draw out of the podcast or the group or both?
Sure. So I'll I'll start with your first question. How did I find, maybe about a couple of months into diagnosis, there was another kid at school, and his mom reached out to me and said, hey. If you're not doing anything, let's meet up at school on a Sunday. I've learned about your diagnosis.
I'm also type one mom, but totally understand if you are not available. Oh my god. I I grabbed the opportunity. I'm like, wow. I can talk to someone.
Let's go. Yeah. Was meant to be maybe half an hour coffee catch up lasted for nearly three and a half hours. And she, at that point in time, spoke to me about this Chewsocks podcast. And I made a note of it, didn't think too much about it as you normally do.
Right? And then when you don't get the desired outcomes, and then you're chasing numbers, and you're getting or you're doing fantastic when your blood sugars after breakfast is 16. And they're like, no. Don't do about anything. It's just the excitement of going back to school.
You're at your wit's end. And I'm like, alright. Cool. Let's see what this podcast is all about because I'm not getting what I want over here. And I know these levels are not okay.
And that's how I literally came to the podcast out of sheer desperation. And as cliched as it may sound, I wish I'd come there sooner.
Well, Well, that's very nice. But I think that's what happens to most people because who who in their right mind is saying to themselves, you know what I wanna do? Wanna listen to a podcast about diabetes. It's gonna be awesome. Nick, that's not a thing that you I you know, I that that that pathway of somebody told me about it and I didn't look.
And then one day, I got so desperate that I thought, I guess I'll try a podcast about that. And then you find it and it ends up being the thing that that that other person promised you, then you have that feeling of, oh, I should have come here sooner. But, you you know, like
100%.
Yeah. It's just how it works, really. Like, it I think you'd have been insane if you would have left that meeting and gone, oh, I should go home immediately and start listening to a podcast.
I Today, if someone talks to me about any podcast, I'm like, let's go. But that was the first time I was even getting introduced to podcast. I didn't have the time to listen to people talk about things. Oh, that's interesting. Then.
Yeah. That's interesting. Also, it's interesting to me too because I've been I've been listening to radio or podcasts for so long that I there are days when I think about this and I think, like, this must almost be over. I've gotta be at the end by now. You you know?
But, like, instead, I I meet people who are like, oh, I just started listening to podcasts recently. I didn't I didn't I don't think I properly realized that there are new people coming into it all the time. And, you know, I I started measuring it against how long I've been listening to stuff. But that that's that's great. I actually think I drag a lot of people into podcast that don't normally listen to them as well.
Because I I seem to have a lot of listeners who when you ask them, like, what other podcasts you listen to, they're like, I I don't really listen to another one. So, you know, I don't think they were gonna find their way to podcast without the diabetes in some in some situations. Anyway, well, that that's great. Did he like, when you learn something and you wanna try it, did you just go try it? Did you explain to him what you were doing, or has that changed as his age has changed?
So he has never heard your podcast. I'm sorry. Oh, I've heard You yeah. But, it's like, I trust you. You do whatever is best for me.
And then I started trickling, that information bite sized pieces to him. So he's without having even heard your podcast, he knows exactly, like, what your core principles are and, what we need to start looking when things are not going our way.
Awesome. So you think if he and I sat down and started talking, he'd he'd know a lot of the things I was gonna say to him already?
A 100%. Absolutely.
That's great too.
One thing I think
Go ahead, Jolene. Sorry. No. My fault. Go ahead.
Basal Testing — the Unsung Hero44:16
One thing, I'd like to call out to people, is I can't stress enough on Basils and Basil testing. And how you get to Basil testing is another conversation. But then the when you think things are not going your way and if you can get your Basil's right, Basil's literally the unsung hero here.
Yeah.
It does most of your heavy lifting throughout the day.
100%. Basil's not right. Nothing else is gonna work. Right?
Nothing's gonna work. Absolutely. And and the moment we'll have a couple of weeks of things are not looking off, okay. You know what? Step on the scales.
You've grown. You've widened. You've whatever kind of thing. Alright. Cool.
Time to do a Basal test Mhmm. And let's get this back here online.
Gotta just get the settings right, and then everything just works so much better. Hey. There's something in here making noise. Give me a second. I'm gonna I'm gonna move something out of the room.
I'll be right back. Okay? Sure. I'm only a couple of weeks away from having an honest to god recording studio. I'm pretty excited.
So that Oh, indeed. That's amazing.
Yeah. Yeah. I built I I I had a we had a basement that wasn't finished, and I got it sectioned off and and, you know, put rooms in and everything, and they just painted it. So I have to go pick out some carpeting to put down and getting closer. So I'm getting excited.
Nice. Yeah. So Excited. Sorry. I didn't mean to cut you off.
But sorry. We were talking about Basal testing and settings, and you can keep going.
Yeah. Sure. So, honestly, if there's one key takeaway people can use from this, recording would be looking to basal testing, work out your creative ways to get your kids too fast, for however long, and you will reap the benefits of that long term.
Yep. You Yeah. Got you have to have your settings right. There's just no there's just no way around it. You can't you can't be using too much or too little insulin and then saying the pump doesn't work.
It's because of what I ate. It's it's it's until your settings are right, you're not gonna know what if there's a problem. There might not even be one. And No. True.
Yeah. He can't how does he do with pre ballsing? Is he good about it?
At home, yes. Because we we do have a structure, but then when he's outside, he pretty much manages it himself. He'll go to the city with his friends, etcetera. You obviously don't get the same level of outcomes, and that's okay. I mean, like, life over numbers is where we've landed on.
How'd you figure that out? What happened that brought you to that?
He's also a kid. Right? And he's also a teenager. So he he's like, yeah. I'll I got it.
You can see my levels. You know what's happening. I've got a drink. I'm not gonna go low.
Okay. Just just sensual just sensible, like, ideas about how to keep yourself safe and the knowledge that he's gotta live his life. You can't always be just thinking of this constantly. Yeah. Yeah.
Yeah. That's pretty smart.
Mhmm.
How, does he split time between you and your ex?
No. He's with me all the time.
All the time. Okay. So there's no there's no problem there where one person's doing it one way, that kind of thing?
Oh, no. Not at all. No. I I look. My ex, we we are in good amicable talking terms.
So and there wasn't ever an issue with regards to management where he had his different thoughts. So that way, we were quite on the same page.
Oh, very nice. Yeah. I I can't imagine how difficult that is to, you know, to have a partner who's fighting against every one of those decisions, especially when they're happening constantly, you know, know, over and
over again. True.
It's really interesting. True. Okay. Well, what else do you have? What what made you want I don't wanna ask it like that.
I feel like I I'm in a weird position where I feel like I know you, and I know I don't. So but it's it's it's a little awkward to me. Like, I feel like I have, like, just a history of, like, chatting with you back and forth in different places and getting messages and stuff like that that, that other people don't have. What else what am I not asking you, I guess?
Puberty, Enzymes, and Kids vs. Pills48:23
Okay. So puberty has its own challenges. And just when you think you know diabetes, your basic rules stay the same, but then it throws so many different flavors that you you need to be quite open to trying different things out just because, the your Basils were right maybe two months ago. You may have had another growth spurt, and thus another basal test is not gonna kill you. It's only gonna make things better.
It it throws it throws golf balls in ways which is quite different, and and I would assume it's it's quite different for girls versus boys because with girls, it's cyclical. So you can somehow I I and I say that without having any knowledge that you may be able to work out a pattern from week to week, but there are no patterns when it comes to boys. And and something just hits you like a ton of bricks, and you're like, why? What? And then you forget, okay.
He's also a boy who's growing up, and it's not just diabetes.
Yeah. Right. Or he's eating he probably eats a ton. Right? That's that age where they eat a lot.
And Yeah. Yeah. Yeah. Yeah. And and they're getting bigger all the time.
They're building muscle. Like, all that goes into it. There's adrenaline and and, you know, then going out and playing hard at soccer. Like, you know, two things feel like they're probably combating each other at the same time.
Yes. Absolutely. And and then if you throw in weightlifting because now someone wants to become muscular, not just or or not muscular as in beef up a big a big time, but then have that right level of presence, that requires a different management strategy versus being on the field when it's training time versus being on the field when it's game time.
Yeah. Yeah. There's just so many variables. But you're saying it we may I'm imagining that with a with a female, you can almost chart it out at some point. But use your hope, I guess, or your your wonderment.
That's my hope. And and, honestly and look, being a a lady myself, I understand no two bloody cycles are the same, and that has so many other variables. And often think that, oh my god. How's this gonna work out if I had a daughter with type one? And, obviously, that's that's a no.
No. I'm not going there at all.
You're like, you're like, I don't wanna go back. I don't wanna go back to feeling that confused. Not doing that. I'm not doing that anymore. What does he excuse me.
Not what? But does he have any other autoimmune issues himself as his thyroid issues or anything else? Just that.
Just that. We we have tested him for celiac a couple of times just because his tummy symptoms, seem to be persistent. But, look, his his reports come out as normal or not indicative. So Yeah.
Yeah. Hey. You've listened long enough. Did you try the, like, digestive enzymes to see if that helped him?
Yes. And now all the ones that I have ordered, I'm the one who's finishing it because he doesn't want to take these things.
They we're oh, why are kids such a pain in the ass about supplements?
Oh, don't worry.
Oh my god. Every one of them. Except except by the way, let me just say this. Except for my daughter's boyfriend, he just listens. I'm like, here.
Take this. These are good for you. Like, take a bite. He's like, oh, thank you. Takes them every day.
My own kids know what he's doing. Right? He's just trying to be the good boy just so that you are okay with him hanging out with your daughter.
Come on. Gonna make him healthier so that he can. But, of course, that's what he's doing, but I don't why don't they listen like that, I'm saying? Like, how come they're not afraid?
I don't know.
Also, this whole psychology about not being able to take a pill, if I'm not careful, I'm gonna start a podcast just about that to figure out what that's about. Because, man, it's hard to get people to take a pill. Mhmm. You know?
Unless and until they want to, and then usually that happens when you're past mid forties and you're you you find yourself crumbling. You're like, okay. Now what can I lay my hands on?
That's desperation is what that is. Yep. What is that about people like, you know, like, even, like, something simple like vitamin d, vitamin b twelve, something like that. Like, you get a blood test back. Oh, I'm b twelve deficient.
I'll take one of these every day. I don't wanna take one of those every day. What? I don't understand. You went to the doctor because you didn't feel well.
You got a blood test. The blood test told you b twelve. Here's the b twelve. No. Thanks.
I don't I I don't I really don't understand. I think It could
be possibly because you don't see the impact immediately. Right? So it's it's a slow build. It's a slow burns. And in today's time and age when, yeah, our attention span is three and a half seconds now, you want things to happen now.
And your vitamin d and vitamin b twelve is not gonna have an impact today.
It is really difficult to say to somebody if you just take this every day for twelve weeks. You're you're a ranger. Yeah. When you don't know that you're when you don't know you have a deficit because it it drifted away so slowly, how am I supposed to put that kind of effort in taking a pill? Which, by the way, just I don't know.
It seems silly to me. I don't know if it's a generational thing. Don't know how old you are. But, you know, to me, I I the way my brain works is I'm lucky to be in a country where I can afford and be in a situation where I can afford this, a country where I can get ahold of it, a place where I can afford it, the opportunity to use it, like, would I not say yes to that? It it
But Scott, as a 16 year old, would he have taken it?
I don't know. I might have. I think maybe I was like an old man, like, back then. I don't know exactly. I wish I could find out.
I really do. Yeah. Because you're probably right. But, man, it's frustrating still. You you know?
Just take your is it vitamin d? Take the damn thing. So do you think the enzymes were helping him, and he just doesn't wanna take them?
Yeah. Definitely.
Not a little prick. You know what I mean. I
know. Hey. And I end up ordering all these things from bloody your side of the world, so it costs me an arm and a leg and maybe a few pancreatic cells.
Can you just force him to do it? Is there not, like, a a financial could could you, like, hold, like, heating and cooling over his head? Say, how do you like it when the house is nice and cool? Maybe it's not gonna be anymore that you take these enzymes with your food. Or or
Okay. So there is a bit of bribery going on in our life, and I pick and choose my battles. So enzymes are not way up there.
So when you say to him, this stops your belly from hurting, you know we've done this, and that's true. And by the way, here's the, you know, here's the science behind why your body might not be making enough, enzymes to break your food down. And he then experiences the a a relief. Can you have that conversation? Does he cut you off before you have it?
Yeah. He pretty much cuts me off, and he's like, no. Nothing to look here. I'm fine. And then I don't know what the resistance is.
I'm I'm thinking maybe it's not really that bad, which is why he's not coming to the party. And if it was, we would have had a chat about it. So I'm okay. Cool. I'm not gonna push it.
Yeah. I don't know. I think I think for some people, I think they don't want to feel like they need something. You know what I mean? Like, there's, like, that sense of, like, I'm okay.
I'm not broken. I don't need anything. My body does what it's supposed to. I don't wanna think about I don't know exactly, to be perfectly honest with.
Or it could even be that, you know, I like, nah. I don't wanna get get dependent on yet another thing to sustain what should be normally done. It that could be the psyche behind it.
'I'm Not Gonna Cheat' — GLPs and Outsourcing Blame56:01
Yeah. Maybe. I don't know. I I watched another person tell me this weekend that, you know I mean, a person who I look at and I think I think they're just gonna stand up one day and their aorta's just gonna come detach from their heart and they're gonna shut off. And their doctor suggested a GLP to them.
They said, no. I don't I don't I'm not gonna I'm not gonna cheat. Cheat? You're telling me. Yeah.
I know.
What are you talking about? You're gonna die. Like, you know I'm not cheating to stay alive. I I wanna be clear. I'll cheat to stay alive.
I just wanna say I just wanna say that rest
Isn't that the whole point? If you have high blood pressure, you take medications to bring it down. Is it that not cheating then? Mean, don't get that.
I that's the I didn't wanna get too involved in it, but, know Okay.
Fair enough.
Yeah. When I was I was just standing there and I thought
that Do each their own.
A conversation is not gonna go in a positive direction. But no. What a great point. You know? What do you mean cheat?
Do you wear a seat belt? You you know? Like, why cheat? Hey. If you have an accident, you get thrown out the windshield.
That's that's the cost of doing business. That's all. Now you're gonna cheat and wear that seat belt? Cheater. I don't know.
He's talking. I'm like, I don't know what you're saying. I I I mean, there's appears to be no common sense in this conversation. And I'm okay with it when it's a 16 year old doesn't have common sense. This person, 50.
You you know?
Yeah.
So my gosh. Like, get to it. Okay. Well, I'm sorry to I'm you know, listen. I'm I guess I'm not sorry to to know you're having the same exact experience raising a child that everybody else does and that your parents probably had.
Yeah. Exactly. Not the end of the world. It's okay.
Right. Right. It's interesting. It really is. Okay.
Well, I I I liked when I asked you what I have haven't I said because like I said, I feel too comfortable with you. So what else haven't I said?
That's it. I mean, look. I I would just say, guys, focus on yourself. It's okay to take time to replenish, and call it out, ask for help. Yeah.
You don't have to do it by yourself.
So for you personally, sleep was a big deal for you.
100%.
It sounds like you leaned on other people. You sought sought out professional help when it was necessary.
Yep. Uh-huh. Okay. Yeah.
And then for him around the diabetes specifically, basal, make sure your basal and your settings are right. Don't exercise with insulin on board if you can help it. Right? And let him be a kid. Don't don't hold him down too tightly.
No. That's a lot of good lessons you've learned in a short amount of time. Have they helped you in any other parts of your life?
Your podcast and just going through this has actually helped me understand a fair few other things that I would normally not focus on. And and I can't even pinpoint if you ask me for examples, but it's like you're when you're when you're listening to other people and then something clicks and you're like, oh, okay. I haven't thought about x y zed or blah. So your podcast is not just, I think, about diabetes. It's just about life.
It's it's about yeah.
Thank you.
So many other different things.
That's how I think of it too, but I don't know how it comes across other people. You know? I I just think that the conversations about what's going on are valuable to hear because, you know, somebody's having an experience or I'm having one or I've been through one already and you're you haven't been through it yet or you bring somebody else on that has some something to add somewhere. Mhmm. And then, I mean, I think the other thing, if I'm if I'm being honest, is, like, I don't really think you can make a compelling diabetes podcast that's just about diabetes.
Don't know how long could you possibly listen to that for. You you know?
True.
Yeah. And and and you have to be able to, like, see some of the other impacts. And there are so many. There are just so many, like, interesting psychological things that happen to people as a matter of course, and you can see how they impact diabetes or other parts of your life. I I love and I love talking about stuff like this.
I really would start a podcast about why people don't take pills. I don't think anybody would listen to it, but I would be I would be endlessly fascinated by it. Seriously, I'd like to get I'd like to get the guy that said I'm not cheating and just make a podcast with him and talk to him talk to him forever about it. I would I would I would argue him into circles. I I I swear to you, I'd badger him into taking that GLP medication.
Why didn't you do that? It's gonna be fun listening to that. I come on. Let's do it.
That's what you want me to do is get that person on and just beat the hell out of him.
100%. Why not? I mean, get the popcorn out.
Alright. But it I'll just call the podcast, what's wrong with you? And then colon. And then and then and then the topic. And then we'll just make a whole series of what's wrong with you.
And then
Oh my god. Do it. God, do it.
God, listen. I got time. I gotta be honest with you. I do I do. But the problem is you have to have people on with enough you have to have somebody on who is simultaneously unaware of what they're doing and self aware enough to talk about it.
That's a that's a thin Surely. That's a thin line to find people there. You you know what I mean?
Come on. 8,000,000,000 people. You're you're telling me these samples are not walking the planet?
Come on. They are. Alright. So if you're out there listening, what's wrong with you? That's what we're looking for.
This is my new this is my new series. What's wrong with you? And then you bring up oh, this might be a good idea actually for wait a minute. Maybe I was maybe I was kidding and maybe I'm not now. So you pick something you know is wrong that you can't overcome, and then I tell you how to do it, and then we talk about it for a while.
And you see if I can break and see if I can break you from your holding. You know what I mean? Whatever thing
you're holding. Self defeating prophecies, that's been a thing for such a long time.
Mhmm. Okay. Alright. I'm in. I'll do it.
I actually had I had a great conversation with a kid yesterday. He's funny. I called him a kid. He's, like, 29. But but he's been on a couple of times.
Right? He came on a second time. And and the first time he came on, he was talking about pump that he was using. He didn't like how it was working, so he went to another pump and it was gonna be great and everything. Then he then he asked to come back on, and I said, oh, sure.
He comes back on, and and he's trying to tell me how that second pump sucked. So he went to a third pump. And I was like, well, that's the one you're on now? He's like, no. No.
I got rid of that one. That one sucks too. Now I'm trying this one. And I went, hey. And I went, is it possible you're the problem?
And and then we were we were having that conversation and I don't know, maybe fifteen or twenty minutes into it, said, would you mind? Could I talk to you like I'm your father for a second? And he said, I wish someone would.
Oh.
Yeah. And then I just I I don't even think I podcast it with him after that. I think I parented him after that. And he was, like, grateful. It was interesting.
And then sent me a message sent me a message that night. I wish I had it. And with a graph. And he just said, turns out when I do the things I'm supposed to do, this is easier. And it was a nice flat a nice flat graph.
And I was like, yeah. Meanwhile, by the way, with this Internet the way it is, he's running around telling the whole world, you know what pump sucks? This one sucks. That one sucks. This one he was up to five pumps that suck.
He had hit them all. He was on to tell me that the MiniMed seven eighty g sucked. And he only knows that because he tried the Beta Bionics pod and it sucked. And he only knows that because he did Omnipod five and that sucked and he did tandem and that sucked. And I was like, I I I just stopped him.
I was like, because you have to from my perspective, what am I supposed to do? That's a as an adult coming onto a podcast, they wanna talk about how their pump doesn't work right. And inside of ten minutes, I'm like, that's not the problem. But do I say that? You you know what I mean?
Or do I let him, like, ramble on about, like, you know, all the problems he's having with his pump? I just couldn't stop myself. I was like, I don't think that's the problem.
And and then that was a common thread leaving the whole Yeah. You picture.
Yeah. The only thing that's in every one of these stories is you. And, you know, and I see people online all the time. Like, this thing sucks. I'm like, well, listen.
It might not be the greatest, but it certainly doesn't suck. Like, if you're having that much trouble with it, like, it's possible there's some confusion user confusion involved in it. And then it's often just timing an amount of insulin after that. They they just don't have the right settings and they're maybe don't time it well. Don't understand the impact of fat.
That's a big one sometimes. You know? Yeah. That's pretty much it though. But it's interesting the way people's minds run away.
Like, this thing is terrible. The thing doesn't work. I'm like, okay. As I
It's easier to outsource the blame. Right?
Yeah. Outsource the blame? Outsource blame. I wish that had anything to do with your episode. I would definitely call it that.
That's a great that's a great phrase. I might start doing it in my personal life. I mean, outsourcing blame, but but that's it. Hey. One quick question.
Why do Indian men walk with their hands behind their back when they're out on walks?
Oh, I think that's a separate podcast in itself.
But it's a thing though. I'm not wrong. Right? Am I wrong? I'm I'm not I knew I was right because I tried bringing this up once before, and somebody said, don't know what you're talking about.
Said, liar. No.
No. It is. Yeah. Mean, let's let's paint a picture. Droopy shoulders, slight pot belly, lightly looking down with hands on their back.
Okay. Well, yeah, that's exactly what I'm talking about. But but but what is but the Sorry.
All you guys out there Sorry. But that's what you're saying.
Podcast is fairly big in India, in case you're wondering. But but no. But the the the hand yeah. I I just I I thought it was cultural at some point, but I don't know what it is. But it's just it's a thing for sure.
And I'm I'm aware. Alright. I'll keep asking till somebody has a real answer. But
I don't have. Sorry.
I like how willing you were to be cruel about it right away.
Hey. Maybe that's counterbalance happening because there's a lot of weight up front, so maybe they're throwing their weight on their hands.
What? Listen. The little round belly is pulling him forward. He's trying to throw his weight backwards with his hands.
Look at you.
I feel like you're talking right to your ex right now, by the way. It's a very, very, very
That may or may not be true.
Wrapping Up — Thank You From Australia1:06:29
Well, did you have a good time? Did was this what you were hoping for?
I I did. Thank you so much. Look. I really wanted to thank you for all that you've done for so many years, and I know you're gonna continue doing that. And the amount of lives you have touched, it's unbelievable.
I mean, honestly, yeah. That that's that's why I wanted to come and say thank you to you. We wouldn't have been where we are
I appreciate it.
Without your podcast.
I appreciate that very much. And I'm very willing to take that because as I told you before we started today, already got yelled at by the Internet today. So I I need a little bit of a bolster. So that was I was it was very nice to hear because I got yelled at today by somebody who I was like, I don't understand what's happening right now. It's like, I like you so much.
I don't know what's going on. But it happens. I I when I first met Isabelle who helps in the in the Facebook group. Mhmm. I told her she was telling me she was being very effusive when I first met her about how much the podcast had helped her as, a newly diagnosed, you know, adult.
And I said, don't worry. One day, you you you'll hate me. And she said, what? I said, everyone does eventually. I was like, I think it's like the I think it's the curse of being, like, a reasonably public person.
Like, you it starts with you know, it starts somewhere at some point it gets to some, like, you know, gratitude or infatuation. And then eventually, I'm gonna say something you don't like and then you're gonna decide I'm gonna ask. I was like, don't worry. It's coming. She goes, no.
I don't think so. Well, now she and I have been doing this together a long time. Maybe it won't be her. But but sometimes it just I feel like, you know, I talk so much. Eventually, I'm gonna say something to make you upset.
And Mhmm. Yeah. You know? So, anyway, it was nice to hear that from you, and I really do appreciate it because
I Look. If people choose to harp on that one thing that didn't sit well with them and choose to ignore the 99 that was good for them, that's a choice. Yeah. And it's okay.
There's nothing you can do about it. I actually you know, I'll tell you can I tell you how I learned that lesson as a younger person? Mhmm. I've I've been fairly clear fairly clear about it, like, the entire time I've been listening to podcast. But I listened to Howard Stern my whole life, like, through high school, like, you know, into my job.
I had terrible jobs where I was listening to the radio all day long. And I'd laugh at all kinds of things he'd make fun of. And then one day, he made fun of being adopted. And I found like that I I I got upset. I was like, oh, that's not funny.
And then I thought, well, wait a minute. I laughed at all the other stuff. Like, right now, there are a bunch of people out there who aren't adopted who are cracking up at this little joke. Like, am I being sensitive or is this not funny? And I I came to the conclusion that I was being sensitive and that that, you know, I had to accept that funny was funny even if it even if it touched me in a way
that yeah.
That that I didn't like. Anyway, it's happened to me in my early twenties, and I I never forgot it. I thought it was an important lesson. I held on to it. So anyway Yeah.
Amazing. And that's your key takeaway. Not many people take, such key learnings from such, and they choose to be grumpy and hold a grudge. And, again, that's a choice.
Yeah. Well, I was very I had plenty of time to think about it. I was standing in a sheet metal shop watching my life drift away. I had plenty of time to think. So I thought if I ever get out of here, I'm gonna need some common sense to get through my life, but maybe I'll start piling it up and see if I can't get out of here.
But, anyway, I I really do I really do appreciate you coming on and for all the support you've given me over the years. And and I'm happy to know that this has helped you and your son, and and I appreciate you sharing that with me. Thank you very much.
Yeah. Thank you so much. I echo the sentiments about the support.
Oh, well, you're wonderful. And tell people you're because it's Australia, it's, like, six. You got on it, like, 05:30 in the morning. So we we appreciate the extra. Also, let me just say to all the no shade on the Australians that can't seem to figure this out, but many Australians missed their recording date thinking it's the following day.
So I appreciate you understanding the calendar. Thank you.
I I kept getting reminders, which was really helpful.
Did the my system did that?
Yeah. Yeah.
Yeah. Look at me. Alright.
I know.
I act like an adult over here. What do you think of that? Anytime I act like an adult, it surprises the hell out of me. So I'm glad that it worked. Thank so much.
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