#1890 Wiener Roast
A Canadian mom whose son's type 1 was caught at a celiac follow-up, a husband running a DIY loop, and Scott playing detective on her iron, thyroid, and brain fog.
Wiener Roast
Cold Open & Sponsors 0:00
Friends, we're all back together for the next episode of the juice box podcast. Welcome. K. Hold on a second. Okay.
Just introduce yourself real quick so we can keep talking.
Okay. Hi. I'm Lana, wife and mother to two, one being type one, and celiac. Yeah.
Please don't forget that 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 or becoming bold with insulin. Subscribing to the Juice Box podcast newsletter is this easy. You type juiceboxpodcast.com into a browser, scroll to the bottom, put in your email address, click sign up. If you're newly diagnosed, check out the bold beginnings series.
Find it at juiceboxpodcast.com up in the menu, in the featured tab of the private Facebook group, or go into the audio app you're listening in right now and search for juice box podcast bold beginnings. JuiceBox is one word. JuiceBox podcast bold beginnings. This series is perfect for newly diagnosed people. This episode is sponsored by AbleNow, tax advantaged savings accounts for eligible individuals with disabilities.
If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs, and many people in the diabetes community do. With ABLE Now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. Learn more and check your eligibility @ablenow.com. You spell that ablenow.com. 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 kontoornext.com/juicebox. I'm having an on body vibe alert. This episode of the juice box podcast is sponsored by Eversense three sixty five, the only one year wear CGM. That's one insertion and one CGM a year.
One CGM, one year. Not every ten or fourteen days. Ever since cgm.com/juicebox. If if all of you could have heard the last eighteen minutes of Lana trying to get set up here, the state would come and take her children from her immediately. And they would say
It's not my fault. I swear.
They would say she she she displays no ability to do the simplest things on her cell phone. I think we have to come take those kids. So let's talk people out of that belief. Okay? Don't you tell me.
Okay. To be fair to be fair, we had to do something different because of the AAPS system that we use because it blocks something. I don't know. So
I don't even care. It's fantastic. We should have recorded the last eighteen minutes and then ended the podcast. It would have been perfect. People would have been like like, they would have been like a little nugget that made them feel better about themselves for the day.
Tech Trouble & the Husband Who Runs the Loop 3:28
They would have spent the whole day going, you know what? It's not going perfectly, but imagine how it's going for Lana right now. Does your whole life go this way, or is this just a technology thing, or what's going on?
This is definitely a technology thing.
Okay. Okay. Well, that'll be interesting when we get to the insulin pump stuff. Tell me how
Oh, yeah. My husband has to do this.
Your husband has to do this
stuff. Yeah.
My wife says to me, she's like, it's you do it because you do it. It's not because I can't. And I go, well, okay.
No. I wouldn't say that. He he set up the AAPS all his own, and I was watching behind. And I'm like, I have no idea how you're doing this right now. And he's like, you could do it.
I'm like, seriously? I don't think so.
Is that
what you're Not at all.
You weren't thinking, oh, I can never leave this guy now. Damn it. Oh my
god. I was I was Yeah. He we're we're stuck together now.
I mean, like, he knows all this. God. What else does he know? What else is happening behind my back that I don't realize is happening? So tell me about how old are your children?
Gabriel, he is eight. He's the one with celiac and type one, and then Olive is seven.
Olive. Very nice. And how long have you guys been married?
Actually, ten years this July.
Oh, actually, you just did that math in your head just now, didn't you? You were like, oh my god. I think it's been ten years. Does that feel like a long time to be?
I just ten years? Yeah. I mean, I haven't had relationships last really more than a year or two. So yeah.
What the like, because that's how you're measuring it. How old are you?
I'm 41.
41. So when you were 31, you were like, this is not gonna work, but I'll marry this guy and see what happens anyway. Is that and then Pretty much. And then two years later, your kid can't eat bread and gets diabetes, or what happened there?
Gabriel’s Celiac Diagnosis 5:26
Yeah. So well, it wasn't two years. It was a little longer than that. But, yeah, he was okay. Some of the story about a celiac diagnosis was kinda like he was losing weight, but we didn't really notice it as much.
It was more so my mom and my family were over there one time, and they were just kinda like, he seems to be a little bit thinner. Like, they just kinda mentioned it to me, not in front of him. But yeah. So I thought, hey. There's been other weird things going on.
Like, we'd go for walks, and he'd be complaining about how tired he was. And John, like, my husband, had to carry him back a few times. And I'm like, this is so weird. Like, what is going on? So we finally I got him in with our my family doctor, and she was kinda like, okay.
All these symptoms kind of could sound like celiac, but let's get his blood work done. So we went and had his blood work done and, like, came back, like, crazy high. Like, I think it's, like, an IgA number is what they Told you. Okay.
Do you remember what it was?
Anyways yeah, it was over 600. So I remember the doctor saying, like, if it's over 20, he's potentially celiac. And we're like, oh, hey. Well, he's definitely celiac. So we actually didn't even have to do the the invasive biopsy.
They're just kinda like, we can definitely just just diagnose him with such a high number like that.
Hey. Are you Canadian?
Was kind of but Are you Canadian? Sorry. I am.
Oh. As I told you earlier, Able Now is sponsoring this episode. Able Now, of course, tax advantaged Able accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify for an Able account because of ongoing medical needs. Many people in the diabetes community do.
With ABLE now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. And thanks to updates to federal law, ABLE accounts are now available to more people than ever before. That means more individuals and families can use ABLE now to save and invest. Funds in an ABLE now account can be used for a wide range of everyday needs, including education, transportation, health care, assistive technology, and more. There's no enrollment fee, and you can open an Able Now account with a small initial contribution and build from there.
Learn more and check your eligibility @ablenow.com. That's ablenow.com, ablenow.com. I didn't realize. I wouldn't have made funny about the technology thing if I knew you were Canadian. You can't help it.
I didn't realize that. I'm so sorry. I take the whole thing back.
Why do Canadians have, like
You're doing the best you Lana, you're doing the best you can. That's all. You live in a frozen tundra. I didn't know what
you can do.
Right? Oh my gosh. I mean, jeez. With all the polar bears and everything, how are you even existing? So okay.
We still have snow. That's what I'm saying. You're at a disadvantage. I didn't realize it. I I didn't hear it till I heard you say you said something, and I was like, oh, she's Canadian.
I could hear it in your voice.
Really? Like, my accent or something?
Immediately. Yeah. I I knew five minutes ago. I just didn't wanna break up your story.
Oh, okay.
I forget what you said, but you used the And I was like, oh, I didn't know she was Canadian. That's what I thought in my head. Yeah. That's right. That's nice.
But now I can't blame you for all this stuff. Like, you guys are prob you probably like a crank generator powering your house and everything. Right?
I mean, you're pretty close.
I'm pretty close. If something goes wrong, the mounties come or how how is it policed exactly?
Well, I mean, there is RCMP, Royal Canadian Mounted Police.
Oh my god. You're bringing me back to the RCMP Twitter feed that is so fan I I don't wanna start talking about it again, but it's just it's just a list of stabbings, basically, that are happening. It's like Yeah.
There is actually a lot.
The the RCMP was was called out to a bar in, like, you know, Saskatchewan where three men stabbed each other for no like, it's just it this is so funny. Anyway, if you guys can find it, it's hilarious. Not not not funny that people get stabbed. It's just you get No. You get my point.
No. Yeah. Yes. So definitely celiac. How old is he when that's happening?
That was when he was five. He was diagnosed at five.
Okay.
So, yeah, there was so we went in, had the whole, like, okay. You gotta eat gluten free now and change out your I don't know. Like, I guess we have two toasters now, one for gluten and one for non gluten. Mhmm. So we do that.
And so then we had to go they told us to go back for more blood work in about three to four months because they wanted to see if going gluten free would obviously bring down his numbers. Yeah. So, yeah, we went in we were supposed to go three months, and I think we waited, like, four or five months, which ended up being probably a I don't know. Why can't I think of the word?
Oh, I don't know, but I'm I'm delighted listening to you try to figure it out. A
Some brain fog.
A misstep, a a lucky thing because
A lucky thing because?
I feel like it's what you ever see those books where you get to choose your own story? Yeah. That's what I feel like I'm doing right now.
I love those books.
Yeah. Yeah. Yeah. We used to have them on records. Do ever you have, like, a storybook that had a record with it?
You'd play like a you're not
old Yep.
For that. Yeah. You
you yeah. I was I'm just old enough, I feel.
Yeah. Oh, anyway, I For those. We have a
record player now. But, anyways Look.
Caught at the Celiac Follow-Up 11:16
May I guess? It was lucky because when you went back, he already had diabetes symptoms, and they caught it then, but he wouldn't have had it two months before if he would have gone back in three months.
Precisely. Yes.
I've been doing this for so long. I already know your story.
Okay. Well, go ahead.
Well, okay. Hold on a second. Your husband couldn't believe it. He said, no. No way.
And you were like, oh my god. He's got diabetes. I called my mom, and no. I'm just gonna go.
No. It wasn't it. But I can remember exactly where we were and everything. It was just we had just actually had a wiener roast because he was diagnosed so, yeah, he was diagnosed September 18. And so we were sitting around.
It was on a Sunday, diagnosed, and we got we went in for blood work. That's the day we went in for blood work to follow-up with celiac. They called us right back that same day saying, like, okay. Your son definitely has type one diabetes. And I remember sitting there being like, okay.
I know this is not good, but I didn't know how bad it was.
Okay. Because Yeah.
You hear that, and you just I just had no idea, like, what this all entailed. I just knew it wasn't good news.
Well, talk about not good news. People who really love the podcast just now thought, why did she say wiener roast in the first ten minutes? That could have been the title if she would have just saved that for a little longer. What a great what a great episode to pop up in your feed tomorrow, wiener roast.
Is that the name of the
This might be the it could be no. You said Weiner. I'm and I'm thinking maybe that's a great title for your episode, but I don't know. I wish people who really listen, I like the titles that come up later because I want you to keep listening to figure out why the hell it's called Weiner Roast. But if you give it
up in the
first yeah. You give it up in the first eight minutes, it's it's too easy. Don't worry. I have high high confidence you're gonna say something else. Probably.
I can't wait till we find out, like, you know, the celiac came, so we just started eating whale blubber. I don't know.
High protein.
I'm sorry. I don't know what's wrong. I had a long day. Actually, I do know what's wrong, but that's not the point.
Okay. I feel like the whole miss, like, technology thing totally threw me off. I felt so prepared, and now I'm just like
Oh, no. No. It's Lana, listen. I had to leave the house like an adult this morning very early, and I'm discombobulated. I have been living a pampered life for so long.
I just want everybody to know that I'm aware of that. That my my son and I had to go into a meeting this morning. We had to be there at nine. It was like an hour drive. So I'm, like, popping out of bed at, like, you know, 06:45, getting in the shower.
I'm like, what? Do people do this? I'm like, just like, whatever. This is horrible. I said to my wife on the phone, I was like, can you imagine if I had to do this every day?
She's like she's like, I do. I was like, I was like, oh, you you set your life up wrong. I was like, this is terrible. So by the middle of the afternoon, I was like sleepy. Was like, what's happening to me?
Oh, yeah. That happens to me too because I'm at home as well. Yeah.
Oh, and yeah. Anyway, it's my fault. I'm discombobulated today, but that that's neither here nor there. I'll I'll take my bad reviews to heart and just get to the point. So there's so much chitchat.
Thanks. It's a podcast.
Yeah.
It's not a Ted
Gong. Yeah.
Yeah. Yeah. Like, I'm not supposed to just stand up and blurt everything out, and then it ends, and you go, right on. But nevertheless.
Well, my husband was trying to tell me how you know, just think of it as like a fireside chat.
Like, oh, yeah.
I should turn our fireplace on.
He's right. And it's all you're doing is you're just sitting and talking to people, and how it comes out is how it comes out. So Yeah. Okay. So he's got celiac.
Thrown to the Wolves 14:58
Now he's got type one. You're not really sure what all that means. What's the the process of education like? And what kind of Yes. What what's the start you get with technology or insulin, etcetera?
So yeah. They're telling me that. I think it was the endo August I called. And they're like, is he okay? Because I think his number was 35, which is I don't know what that is in
other talking off that.
600. I think it's, like, 6 or 7, 800 probably.
Okay. The Kontoor Next Gen blood glucose meter is sponsoring this episode of the Juice Box podcast, and it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your insurance company. That's right. If you go to my link, contournext.com/juicebox, you're gonna find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger, and Meijer. You could be paying more right now through your insurance for your test strips and meter than you would pay through MyLink for the Contour Next Gen and Contour Next test strips in cash.
What am I saying? My link may be cheaper out of your pocket than you're paying right now even with your insurance. And I don't know what meter you have right now. I can't say that. But what I can say for sure is that the Kontoor Next Gen meter is accurate.
It is reliable, and it is the meter that we've been using for years. Kontoornext.com/juicebox. And if you already have a Kontoor meter and you're buying test strips, doing so through the juice box podcast link will help to support the show. Why would you settle for changing your CGM every few weeks when you can have three hundred and sixty five days of reliable glucose data? Today's episode is sponsored by the Eversense three sixty five.
It is the only CGM with a tiny sensor that lasts a full year sitting comfortably under your skin with no more frequent sensor changes and essentially no compression lows for one year. You'll get your CGM data in real time on your phone, smartwatch, Android, or iOS, even an Apple Watch. Predictive high and low alerts let you know where your glucose is headed before it gets there, so there's no surprises, just confidence. And you can instantly share that data with your health care provider or your family. You're going to get one year of reliable data without all those sensor changes.
That's the Eversense three sixty five. Gentle on your skin, strong for your life, one sensor a year that gives you one less thing to worry about. Head now to eversensecgm.com/juicebox to get started.
So yeah. And he's like the doctor is like, is he okay? I'm like, yeah. Just had a Lira's. He's running around.
He seems fine. They're like, okay. Well, I guess if you're okay with bringing him in tomorrow morning, then we could just do that. I was like, sure. Like, they didn't seem too concerned.
And I was like, is there anything that I should or should not do? And like, well, just don't, like, give him pop or juice or anything sweet. I was like, noted. Okay.
Okay.
So went went to bed normal. I don't know. Like, didn't really know what to be, you know, like, worried about yet. And so went in the next morning, and so that's when we started with the education. So there's, like, there's a peds hospital, which they were pretty pretty good.
Like, it I like how it was just, like, this is his number. He's type one. It was just that was basically how he was diagnosed and just like threw us into the wolves, you know.
Yeah. By the way, a 35 is is 631 for people.
Okay.
Yeah. Using different measurements, just so you know. That is Mhmm. So how long do you think how how almost said how long I almost said how long do you think he was afflicted? But I don't know where that came from since it's not a movie from the thirties.
But, like, how long do you think it had been going on?
Well, I think we caught it pretty quick because his his a one c was 7.8.
Okay.
And at his celiac, like, back, like, four or five months prior, his a one c was normal. Like, it was, like, 4.8 or something, I think, I wanna say.
But they
have really from, like, April to September.
He's probably, like, small bodied at that point. Right? He probably doesn't weigh too much.
No. He was he's very thin. So well, that was a thing. So it was thin from celiac. Then he started kinda feeling better, it seemed.
He wasn't so I don't know. He was just so irritable and just so not himself because he was seriously the most easygoing Mhmm. Human being, like, you'd ever meet. So, yeah, he would just, like, get so angry and just not like not like him. That kinda went away, and then it kinda started up again.
And just like their classic looking back now, drinking lots, going to the bathroom more at night Mhmm. And, I don't know, just the usual. Those are the two things I noticed the most. And I think he was starting to get quite, like, irritable again, being really grouchy and not being himself and just, like
But if it wasn't for the celiac, those aren't enough to make you go to the doctor. Right?
Mhmm. Yeah. Exactly.
Yeah. Yeah.
So, like, honestly, it was just our going in for our blood work for his celiac, and that was how we yeah. I don't even know. So we definitely escaped the whole Gary DKA stories, which we're so thankful for.
Yeah. Of course. So then what do they do? I it depends on what I should say province. Right?
But it depends on what part of Canada you're in about how they start you. So what was the management style getting set up?
So yeah. We went in that morning, 8AM, and I feel like a lot of
it is such a blur.
I do remember sitting there and being like they're telling us how to like, for food. So it was, like, counting carbs and, like, okay. So if he's gonna have some rice, then he'll put this out. And we should want to figure out, like, how much read the labels and how much rice he'll be having or any whatever. All the food.
And I just remember everything was coming at me. And suddenly when they were telling me about how everything he eats needs to be accounted for, I just lost it and just started, like, bawling. Yeah. Like, okay. This this is what I was wondering about when I was like, this is bad, but I don't know how bad, you know, until Until you get it and then
Yeah. And the idea of having to just keep track of so many things and measure medication every time, it hits you all at once.
Yeah. It did. Yeah. So it was so it was that. And then I think, I don't even remember.
I don't even think we had, like, a meal there yet. Oh, it is such a blur. That was trying to think about it.
No. It's it's super interesting. You you your recollection is is cloudy for sure. Like, and and is it that way about other things, or is it just this?
I feel like it has gotten more so like that with the lack of sleep through this whole entire
Uh-huh.
I don't know. It it played a big part in, I feel like, my brain fog and not being able to remember things so well, and, like, words don't come to me as good as they used to. And I don't know. It's crazy. Like, my friends even have noticed that too.
Brain Fog, Sleep & Two Years of MDI 22:53
How how how long has it been now, Anna? Like, three, four years?
It will be me four years, September.
Okay. And you're not Yeah. You're not sleeping well?
Better now that we are on a pump.
Okay.
We did MDI though for, like, two years. And Aaron was always like, why are you doing MDI? Like, how do you just?
And why were you? Hold on a second. I'm gonna This doesn't happen often. Give me one second, Lana. Yeah.
Arden Arden, I'm making the podcast. What's going on?
Okay. Well, I I need you for a second. Mom's old part is on file, not her new one, I don't think. So can you just check to make sure that I have enough to pay for this on my
I'll okay. I'll make sure right now. Okay? Yep. Bye.
Sorry. Hold on everybody Okay. While I take care of some apparently, financial issues by moving some money around. Arden is getting her hair done at the moment. And I guess she's trying to check out, and they're like, this card doesn't work.
Yeah.
See here. Sorry.
No worries.
We'll get back to you in just a second. But the people that hate the fluff are gonna hate the hell out of this. And my bank's making me put in a code so I can log in. That's taking time.
Oh, banking is another problem with me.
Lada. You're awesome. Hold on a second. Turn off this reminder for now. Let's see.
Transfer. A little more Scott's money going to somebody else. That's okay. Part of it here. She's also just texting She's texting me now.
She's like, also, it looks like my card expires next month. I'm like, oh, okay. Well, we'll just worry about all that right now. Hold on a second. And now, of course, I have no idea what she did because when she left there, I was like, so what are you getting done?
She was like, oh, you'll see when I get home. And I'm like, oh, okay. Oh. So Yeah. Yeah.
Yeah. I don't know if there's like there could be color in here. There could be a cut in here. I don't exactly know what it is I'm transferring money
Base tattoo.
Oh my gosh. That would be terrible. Hold on a second. Let me tell her the money's in the account. Okay.
Looks like it's taken care of.
Oh, good.
Yeah. Awesome. Imagine technology. Ten years ago, I I would have been like, I have to go now and take and take Arden, you know, money so she can get out of the hairdresser without
I would probably have I probably would have still had to do that. I'm like, okay. Hold on. Well, yeah. Arrive there and
get cash. You're like, I think I could do this, but my phone's never gonna let me. During this setup, Lana kept going, why is this happening to me? I'm like, it's not really happening to you. You just don't understand the details of what's going on.
Sorry. Sorry. Sorry. Sorry. So but but so you said the first two years were MDI.
Why It Took Two Years to Pump 25:55
Yeah. Why did you and you switched over to a pump. What pump did you get?
Omnipod Dash because we had full intentions on going to, like, AAPS because we have Androids.
Okay. And what was I gonna say there? Okay. How why did it take you two years to do it? What not that that's a long time.
Just what was the process?
It is. Well, we had been doing okay because we we were kinda doing the lifestyle just because it felt much easier, like, obviously, with his celiac. And then we're just finding recipes, and I was kinda like, oh, this is keto. I'm like, okay. Well well, let's just try that.
And so it had been going okay. So at school, we would pack, like, lower carb meals, and it just wasn't very difficult to take care of. So he would just get he would get his needle at school, and, like, the EA would do it. They're called, like, educator assistants
Okay.
Here. We don't we don't have school nurses.
I
know. So yeah. And at home, it just seemed to be working out. Like, then he didn't want anything else on him. Like, CGM was enough for him.
And yeah. I don't know. I just felt also intimidated by, you know, more technology.
Yeah. No. I hear you. And But what made the so then what made the change? You just
learned learned more? Because yeah. I think so. And also, the oh, wait a minute. The g seven
Mhmm.
Was starting to work better. So because we were having so many troubles with it. And I don't know. It just started kind of working a little bit better for him.
Okay.
So we decided to try a pump because then we knew because we knew that, like, obviously, the pump goes by what the CGM's numbers are.
Okay.
So, yeah, we're all kinda just ready for it. And I was getting I was so done with the needles at night because that was probably, like, our biggest the biggest hurdle. Hurdle.
Autoimmune, Adoption & a Hashimoto’s Hunch 28:06
Hey. Let's pivot for half a second. Do have other autoimmune stuff in your family, your mom your side or your husband's side?
Well, my husband's side, yes. He his grandpa on his mom's side had MS, and his cousin on that side also has type one diabetes.
Okay. And how about on your side? Does your mom have a thyroid problem?
Well, I'm adopted, so I don't know a whole lot about that. I just know through k. So backstory. Go ahead, please. Through the adoption, we were obviously give my parents were given some papers.
And, oh my gosh, I feel like I am so nervous right now
for something. Don't be nervous. First of all, Lana, I'm adopted too. I don't know if you know that or
Yes. I did know that, actually.
And and I'm I'm sitting here thinking, like, I wonder if you maybe don't have, like, Hashimoto's and you don't know it or something like that. Because, like Me? Yeah. You. Because you've and the the brain fog's for real.
Right? Yes. Is there anything else going on? Is your hair falling out? Have you gained or lost a lot of weight that you can't figure out why?
Well, I've gained weight, and I kind of I guess I am kind of, like, I was losing hair worse before, but I feel like there's also a reason for all of
that. Yeah. I think that reason might be called Hashimoto's. Hold on a second. So, like, do you okay.
Wait. Wait. Wait. Wait. Hold on.
Everybody a lot.
Everybody calm down for a second. Are you fatigued?
I mean, yes. But okay. I have endometriosis, which also has a lot of those same
Okay. Okay. And just brain fog. Do have any cold intolerance?
Not really.
Weight gain? Yes. Hair loss?
Yes. Yes.
Joint pain?
I feel like I have answers for those. They're not what?
You have joint pain? Nope. Okay. Feel weak?
No.
Alright. Depressed, sad, anything like that? Mood all over the place?
Sometimes.
Uh-huh. I'm sorry for this last one. Any sexual dysfunction? No. Okay.
Well, you Not
since the whole endometriosis thing was figured out.
You got that all? Oh, Well, how'd you figure that out?
Well, I had been having quite a bit of pain kind of in my, like, ovary areas.
Right.
And also so also thought maybe I was potentially, like, gluten intolerant or even celiac, but I just never got tested for celiac.
Okay.
So I go in because I had so much pain. I went to the ER, and it was so bad on my one, like, my right side. And they were feeling around on there, and they'd said they could kinda feel like a bump. And they're like, oh, what could potentially be like endometriosis? So they got me in for a ultrasound.
And, yeah, I guess I could see it on there. Like, they did the invasive ultrasound and then also the one, like, outwardly.
Mhmm.
And that's kinda how they found it. And then I went in for surgery and had some cysts removed.
Interesting. Yeah.
Mhmm. So it so I had that. And then
That's recently? Pain
what? Is that recently? Yeah. Like, two years ago?
Yeah. For boys listening, when she says invasive ultrasound, she means giant dildo with a camera on it just so you all know what your ladies are going through. Yeah. Yeah. Yeah.
That's exactly it. Yeah. Yeah. No. I I've I've heard the stories.
So I haven't been there, but I've heard the stories. And I've seen the face afterwards, by the way. Yep. Yeah. I've seen the I've seen the the, oh, okay.
Well, that happened. Yeah. Look I
mean, after having kids, I feel like nothing
That doesn't matter anymore.
Nothing is that scary anymore.
You think back to when you were 18, you're like, oh, that was so cute of maybe. I'm like, oh, no. Don't look. Yeah. But but okay.
So you had Oh, yeah. So you had endometriosis. So, I mean, you still do. Right? Like, so
Yes. It doesn't go away. Yeah. It's crazy
what it is. Yeah. No. I I know of a fair amount of like, everything you just described, going to the hospital, pain on the right side, they're like, oh, it could be your what do they do? They do they say, first, it could be your appendix, and it's not your appendix.
They say, it might be your gallbladder, and it's not your gallbladder. And then they do the thing, and then they go in and pop out a couple little cysts. You're like, oh my god. The pain's gone. That's crazy.
And and the pain's insane. Right?
The pain is excruciating. And so it's obviously worse when, like, when you're on your period, ovulating. And so I don't know how much TMI. But so yeah. So I was still having a lot of pain, a lot of bleeding.
Hysterectomy, Fibroids & Low Iron 33:17
And so I actually went back in telling them that, and they did more ultrasound. And they found that another one had now grown, and, like, they ended up actually having to get a hysterectomy as well.
Oh gosh. Did they do a full, or would they take the the
They did a like, they took just the uterus. They left my ovaries because they didn't wanna put me into, like, pre
Pre pre menopause. Yeah.
Yeah. Exactly.
Oh, did that help?
Yes. Definitely has. Awesome.
That's good. I And even that I'm sorry. I I don't think I'm you know, I'm just gonna you know what mean? Sometimes I think of something. I'm like, I don't think I should say that.
But my wife has, like, a fibroid inside of her uterus.
And I had that too.
Oh, awesome. And the fibroid is growing a friend. And at this point now, like, you can almost feel it, like, through her stomach. So Oh, wow. She's going in two days for a surgical consult.
I'm pretty sure they're gonna do the same thing to her.
Yeah. Because well, what my what my doctor said is he could either go in there and, like, essentially file it down or and, like, maybe the bleeding wouldn't be so bad and maybe your pain wouldn't be so bad. But I was just like, honestly, just get rid of this uterus. Just take it.
It's horrible thing. So What what are there any downsides to anything you've found?
I mean, obviously, I can't have children anymore.
What? I
was already done with that.
I was gonna say, thanks, captain obvious. I meant other stuff. You and if anyone's listening right now and they just learned that, they're like, oh, she can't have a baby now because they took the uterus out. If that just happened to you, I'm so sorry for you. But but but otherwise, Okay.
So, yeah, there's no, like, other, like I don't know. You didn't grow a horn or a mustache or anything like that. Lana. Lana, are you gone? Shut off her audio.
This happened earlier when we were setting up. She'll figure it out in a second. You're back. There you go.
Here I am.
That's all. I love it. Any any anything weird going on or you're just generally happy you did it? She's gone again. Lana, I can't hear.
Did I actually Yeah. You're back now. Yep. Oh, what the heck?
I know. I think it might be the question. I'll ask it again and see if your voice goes away. Were there any other unwanted side effects after this?
No other unwanted side effects
Mhmm.
At all. Okay. Yeah. Obviously, I had to outweigh what I like, when I was researching, like, to do it or not to do it. And I don't even remember what the things are that could potentially happen because I haven't had to worry about this.
So k. Good to good. And I like, I had to get another sister moved anyway. So I was like, they were gonna go in there anyways. So I was like, why not, you know
Take care of business.
Take that while you're in there.
What what was it minimally invasive? Did they go through, like, they open
My belly button. They go through your belly button.
What was the recovery like?
Well, for the hysterectomy, it was, like, six to eight weeks where you can't, like, lift or do anything. I was kind of, like, probably in bed for about a week. Obviously, you're supposed to, like, get up and move around and stuff, but, yeah, I think it was about a week.
Wasn't bad after that. And you just don't lift anything. Yeah. My wife's not lifting anything anyway, so we're fine.
No. Yeah. Yeah. So so it was kinda like during that time, feel is when I kinda put on a weight. So Okay.
I feel like there's reasons to why certain things have been going on, and it is not hashing modus.
Well, maybe it's not. I I wouldn't say it could be a it could be a lot of different things. But, I mean, there that's a fair amount of, like, issues going on for you, though.
Mhmm. You know? Must feel like
You don't forget to take care of yourself is what I'm saying, really.
No. Yeah. Exactly. And I feel like that's kind of this year is finally where I'm like, you know what? I'm gonna do a little bit more for myself.
And because this I can't have type one diabetes be bringing me down.
Well, it's good. Yeah. I mean, first of all, like, I'm not gonna say something, like, trite, like, you have to put on your mask before somebody else's. But, obviously, you need to be okay too. And, you know, the worse it gets for you, the worse it's gonna get for everybody.
You just Yeah. You're just gonna turn into one of those moms yelling at people at the McDonald's. You know what I mean? And there's you don't want that.
So No. Yeah. No. Yeah.
No. No. Want I wanna be a happy person. But there's there'd be nothing wrong with going to an endocrinologist and saying, you know, my son has celiac. He has type one diabetes.
You know, I have endometriosis. Here here's what's going on. Still, like, why don't we just do some blood work and see where we're at? I'd love a full iron panel. I'd love make sure you're not in need make sure you're not
in And yeah. So I did actually have to go and do all that before surgery for my hysterectomy, and I was a very iron
Deficient. Deficient. What'd what'd they do for that?
I actually did get the transfusion while I was in the hospital right after my surgery.
Did they give you enough? No. They really gotta juice you up for it to really work.
Oh, wait.
Do you remember
Oh, they did.
Do you remember what your baritone level was?
There's no way that
all Did you look up?
I'm gonna be able to look all this up even talking with you, but I can't now because then I then I go away.
Because the way you're using your phone. Yeah.
Yeah. But they were it was low.
Yeah.
They that was very low. So, yeah, they were able to do that for me while I was in the hospital, which was awesome because then I didn't have to go back or pay for it.
How many how many did they give you?
I don't know. I don't even know how many they gave me. They just said
What? Did he do it one time, or did he do it multiple times
over a couple weeks? Was just one time, like, after. And I was there for, like, I don't know how long did it take. Two hours?
Yeah. Well, I would tell you that, like, I mean, I've gone through this myself and usually, it's multiple infusions to get you back up to where you're supposed to be. And they usually give you one, wait a week, do it again. So my thing would
be Oh, yeah. That couldn't happen.
Yeah. My thing would be go get those labs run again. Because your you go brain fog, fatigue, weight gain, hair loss, that could be anemia. Right? Yeah.
So, like, go so I'd go back and say, hey. Listen. I was low before. They gave me some, but only once. I still have a lot of these symptoms.
I wonder if, you know, maybe I don't need it still. And because I think that I mean, I've had people on, doctors on, who say that they want your firetin to be, like, at a minimum 70 at a for a woman your age. If you're if you're walking around at ten, twenty, thirty, a lot of doctors will tell you that's okay, but I really it isn't. It it leads to all the things you're talking about.
Yeah. Yeah. Yeah. I knew I do need to go up for follow-up blood work.
Good. And it's Canada. I mean, you have to hurry because you're not dying, so they're not gonna help you for, like, nine months. So
Hey. To be fair, I've actually had pretty good I know and you hear about it, like, everywhere here where it's just awful healthcare and stuff. And to be fair, I actually everything that has kinda happened to me and my family, it's been dealt with very well. Like, I can't actually complain about it.
Cool. What province are you in?
In Saskatchewan. Okay.
Well, they there's only three people there, so there's not much of a line. They're they're just like, oh, you know who's coming early? Lana. And they go, oh, yeah. Who?
I
don't sound like that, do I?
No. I'm just teasing him. Of course not. Not at all. But I've just heard different stories.
There are people in some provinces that are they'll wait nine months or something that's not life threatening.
Oh, yeah. Yeah. It's I mean, okay. So it's funny. Got on to this podcast so quickly to do an interview because I was just like, you know what?
Last minute, let's do it. I had my hysterectomy last minute. They called me on a Wednesday. Like, wanna come in on Tuesday and have your hysterectomy? I was like,
yeah. Sure. Why not?
Because I I was on a waiting list, and I had no idea when I was gonna get in. So I guess that would be the thing where I was gonna have to deal with that for much longer had I not gotten in on a cancellation.
Yeah.
But it was it worked. So
Well, don't tell people how you got on the podcast because it'll make them mad. Because every once in a bay basically, what happens is every once in a while, I go look at my calendar. I sometimes I have to move things around. I have to travel next week. I have to travel next week for work.
Can I say what I'm doing? Probably not. But I'm going to do something next week that I wasn't expecting to have to do. So I had to move some things around and make some space on my calendar. And then I realized that today, I had that meeting this morning that I was telling you about.
And so I moved the person off of today to another day. There was somebody scheduled for today and I moved them. Oh. But then when you came on, that all of a sudden, I forgot to block the day off, so it looked open. And so you didn't you didn't wait in line like everybody else because today's not supposed to be here.
But once you were emailing with me, I thought, oh, we'll just work it out where I'll do it later in the day. And yeah. Yeah. So don't tell the people who waited six months to come on the podcast.
Oh, well, I won't. Everything just seems to work out how it should. Right? Yeah. Keep your
Living With a DIY Loop (AAPS) 43:05
head down. You deserve it. Trust me. So so so he jumps your son jumps to Android APS. And Yeah.
Something your husband sets up, a DIY algorithm for people who don't know. Right? And what's your experience been like with it?
It's been I don't know. It's been okay. I feel like he's so sensitive to insulin that sometimes, like okay. For, like, DIA, you can the highest you can go is nine hours or what like, whatever that means, I guess. I don't even know.
It's, how long the insulin is in you for. Right?
Duration of ins duration of insulin acting.
Yeah. Yep. So nine hours is the highest we can go, and sometimes I feel like that's not even high enough. But and with his okay. So another thing we're struggling with that night is when he is laying on it and he has a false low, it turns off the insulin because it thinks it's going low.
Yeah. And then you roll him over and he goes back up, and then it's like, oh, let's give him insulin. It's like, no. I don't want you to give him insulin. He's just going back up to his normal Okay.
From what he was. Does that make him low later?
Yeah. Because it's blasting with insulin when you didn't need it. Well So we always have to instead of just like well, then we just have to put a temp target on it. Like, okay. Don't send him insulin because he's literally just going back up to where he normally should have been.
Mhmm. Okay. So it sees the rise?
Like little things. Yeah. It sees a rise, and then it's like, oh, it needs insulin because it's going high.
Even if the rise doesn't go over top of the correction number? Because, like, are you
telling me
are you telling me, like like, his blood sugar is nice and stable and normal, but he rolls over, gets a compression low, it cuts off his basal for a while. He looks low, you roll him over, the blood sugar pops back up, and it starts the bolus.
Yeah. Exactly. If we didn't put on a temp target.
Okay.
So if you forget, then it's like Then you get that way around that. Like, I think you could probably I think you'd have to make your own. Like, that's where we we're kinda like, well, I don't know how to do that.
Make your own.
Like, it's gotta be
What? Make your own
build it?
Like Make your own
build. I think you can build that kinda thing on AAPS, but I don't know how.
Oh. And
that does my husband.
I see. So some sort of, like, an add on to the algorithm that that does a thing you'd like it to do in a certain situation.
Yeah. Exactly. Okay. So he doesn't use a whole lot of insulin. Like, what what the max fill is, like, 90.
And after three days of changing his pump, we usually have, like, sometimes 50 45 to 50 units still left.
Okay. Alright. So he's not using a ton of insulin then?
No. He's not.
No. And because you're eating more low carb and not using a lot of that kinda, like, celiac friendly stuff that can be higher in carb.
Well, I mean, we still kind of try to do low ish carb. Like, say, supper, we'll have we usually have a meat and some, like, vegetables as opposed to before we'd probably, like, load in a ton of I don't know. We'd have, like, either rice or potatoes Mhmm. Or, you know, like, that empty carb Kinda keeping away from But
keeping away from starches and stuff like that now.
Yeah. Okay. So that has definitely helped. So usually, our mindset now is, like, a protein and a vegetable for supper. Mhmm.
Not all the time. Like, we still have spaghetti. Like, last time we had chicken Alfredo. Like, we haven't we were at the first year. We were kinda not having any of that.
And then it just kind of I don't know. It just got too difficult, and he wasn't gaining weight. Like, he wasn't eating enough protein to make up for the lack of carbs or whatever.
Okay.
So we're kinda like, well, we're just gonna introduce carbs back in again. Okay. And meaning, like, spaghetti or, you know, noodles
and stuff. What's this a one c at?
I think the last one we checked, it was six point zero.
Oh my gosh. Sounds like you're doing pretty well.
Yeah. I mean, I'm so hard on myself. I feel like I'm I wanted it to be I thought it would be in the fives. You were
disappointed with the six?
Yeah. Sort of.
No. That that I
feel like we've been doing so much I feel like we were doing so much work, and then, like, hear that it wasn't, like, 5.8 or 5.7. I was just like, oh, like, how do you actually get into the fives?
Well, you just keep your blood sugar lower from where, like, stable times. It's it's but but but, I mean, first of all, he's he's not that old. Right? No. He's has to deal with celiac.
Does so is there something about celiac that changes the a one c? Is there accuracy? I'm trying to think if I remember something about that. Oh, sorry.
I don't really know about that. Like, obviously, if he were to have like, if he were to get gluten, I'm sure he would like, that would affect some way somehow.
Well, okay. So it's like
Because then
I'm looking it up because I I remember something, but I didn't remember the whole thing. Like, so celiac doesn't change like the a one c test, but the idea is that untreated celiac could cause malabsorption that could create an iron deficiency and anemia, and then that might impact the a one c. So Right. But he's not he's you guys are sounds like you're pretty careful with the celiac.
Yeah. Like, we went in last time for his celiac. We got that checked too, and he's back down to, like, a a regular like, if someone were not celiac number now.
The the the test. The Yeah. IgA test. Right?
Yeah. Well, that's good news.
I mean, you have two toasters now, so you might as well utilize them. Was that as an as an adult, you mean, taking the health part out of her for a second, is there a moment where you look at the countertop and there's two toasters there and you think, oh my god. We have two toasters. What happened to us?
Oh, yeah. Yeah. Absolutely. We actually finally were just able to move it over to, like we moved into a new house, and the, like, pantry area didn't have any, like, plug ins. And so we're like, what the heck?
We can't put our two toasters in the pantry. Yay. We had to have them out on on the counter.
Two toasters?
Anyways, we
What a waste of your adulthood. Yeah. Just my goodness. How does he hand how does he handle it? Go you mean what?
Go ahead. I'm sorry. I cut you off.
No. I was just gonna say, like, we have more than just two toasters. It's like two of so many things.
Two Toasters & Splitting the Caregiving 50:08
Two bread knives, two places where you keep stuff. Like, you're keeping things completely separate?
Well, kind of. Like, do we have one kind of cabinet for him, and then the other side is the gluten stuff?
Okay.
But so, I mean, if you had, like, a small kitchen, I just feel like having all this double of things would be Annoying.
Overwhelming or maybe contaminate itself. Right? So is that is that does he have, like, flare ups from contaminations, or is it not that
Honestly, no. I feel like he wouldn't he has gotten sick maybe once or twice, and we thought, oh, well, maybe it was gluten. And I think both times is when we'd gone out for a meal. Mhmm. And so I remember him, like, the next day kinda felt like he had to throw up and stuff.
And, well, you know how when a child has to throw up after dosing him, it's never fun.
Just like, oh, good. All the insulin's in there, but under the food.
Oh my gosh. Exactly.
So it so the whole thing is, like, I mean, you're are you a stay at home, did you say? You stay with the kids during the day, or you you leave and go to work to she's gone.
Yeah. So I'm definitely the the primary, like, caregiver when it comes to especially diabetes. So I'm always the one in, like, talking with the school or messaging back and forth with him Yeah. Which he's gotten really good at now.
That's awesome. You guys are just kinda texting about his diabetes back and forth?
Yeah. Yeah. So he has a, like, a phone and a watch. So just recently, he's been doing so much better with, okay. It looks like you're going well.
You should
have a
tab, and then he'll give the thumbs up. Or if his alarm goes off, he'll be like, okay. I'm having a tab because my alarm went off.
Nice. That's good.
And that's just recent.
Yeah. That's good. I mean, it'll keep growing. You know what I mean? Like, things will
get Yeah.
Easier, better. He'll understand more. You'll probably rest more. That'll be good too. And then things will seem different in in the light of day, I would imagine.
Husband knows a lot of knows anything about it or is mainly stays into the like the app building side of this?
No. No. No. He I mean, he does do the app part side of it, but, no, he's definitely involved. And I've gone away and, like, for a weekend or whatever, if I go out, he's there's no problem.
I'm not like, okay. Are you gonna be able to handle this? Yeah. I mean, I do feel like I know more about it and, obviously, because I am more involved while he's at work. Mhmm.
But, no, there it's definitely both of us Okay. Doing it. That's awesome.
Where Does This Go? Family, Loss & Adoption 52:49
Yep. Yeah. Where do you think this all goes? So, like, when you I mean, do you have the brain space for that to think about, like, how is your son gonna grow with this? What are expectations for him look like short term, long term?
Or is it more of a one day at a time thing for you?
I feel like I've kind of taken it more so a one day at a time. Just because before, like, the first year was I would say it was pretty dark. Okay. It was kind of always thinking about what's gonna happen, what could happen. I feel like I haven't had the best information given to me about other type ones in my life.
Uh-huh. Like, one of my friends, she actually passed away from type one diabetes, and my birth mom almost passed away from it. And my husband's cousin has quite a few medical issues from it too. So
What? So wait.
You Kinda like
Yeah. That's upsetting. But your birth mom had type one? Has?
Yeah. Okay.
And and and and someone on your husband's side has it too. Mhmm. Yep. Oh, okay. Yeah.
It's a perfect little mix here. Did you guys Yeah. Did you guys meet on on autoimmune Tinder? Where how'd you
I mean, you could minus the word autoimmune, but we did meet on Tinder.
Oh oh, god. So the kid was the kid was I don't wanna say doomed, but he was definitely gonna like, something was gonna pop up. And this makes me think more about good.
It's so funny. Well, okay. Not funny, but I feel like until his diagnosis, I really didn't have a whole lot of information or even know much about autoimmune Uh-huh. Because it wasn't really in my adoptive family that I knew of.
Yeah.
So I had read like I was saying oh, yeah. Here's what I was saying before in the papers that we had gotten with like, through the adoption, it had a little bit of description of her, and it said she had gestational diabetes while she was pregnant with me. And so, like but then I actually ended up meeting her, and she I remember her talking about diabetes, but it was never, like, a specific, like, yes. I have type one diabetes.
Okay.
Unless she did, and I just don't remember because I was 18. But
When when you met her. How'd you end up meeting her? Well,
my they didn't I think it was on the adoption papers. They forgot to, like, white out, I guess, essentially, her name. So we were able to go off of her name and my mom, like, my adopted mom. Well, I guess, my adopted mom, my third mom.
Wait. Who was the second one? He
my dad's first wife passed away when I was two. So you were They adopted me in.
You were adopted by a a man and his wife. And then when you were two, she passed away, and then he remarried. Yes. And so you've only so you don't even know you don't you don't have any recollection of your first adopted mom?
No. No. Not really at all. Like Wow. My brother does.
He was I think he was 10 when she died.
Okay. But your brother Yeah.
So they're my dad.
Wait. Is your brother another adopted person or is he natural to the two of them?
He's natural to my dad now and his first wife.
His first wife.
And then my dad remarried to the mom I have now, and they had two more kids.
Naturally.
Naturally. Yes. And I'm I'm the only adopted one.
It's so interesting that you don't refer to the woman who adopted you as your mom. She's your dad's first wife. Yeah. Have ever thought about that?
I have. Yeah. It's almost like I feel like I didn't have her long enough to call my mom or something. I feel like, I don't know. It's really weird.
I've definitely had this conversation in my mind before.
Yeah. Because if you were born to two people and two years later your mom died, you'd say that my mom died when I was two, and then my dad remarried and this is my step.
Well, yeah, don't know if I made it clear. My birth mom is not with, like, the dad that I'm,
like, talking about. You were clear. No. But so I yeah. So what I'm saying is is that I in a supposition kind of if if you suppose for a second let's say you were born to the people you were born to and they kept you.
And then two years later, your mom that mom died and then your father got remarried. You would say to people, my mom died when I was two. I was raised by my dad and my stepmom. Right?
Yeah. You're right.
Yeah. It's a it's
a It's funny you picked that up because that's definitely something that I think about where I don't usually refer her to as my mom.
Yeah. No. No. You're definitely you're talking around it on purpose. Like, but not, like, just because we're recording, that's how you talk about it.
Like, I could tell.
Oh, yeah.
This is the part I'm Wow. Yeah. Yeah. I'm really good at this part. I don't it's sorry.
No. I I know. I've I've noticed that.
Okay. Well, it's interesting. You should see a therapist. Do they have the honey cat, or what what would they do? They just put you with an otter?
Well, no. I think they just set you up with some, like, bear or something.
A bear. Yeah. Yeah. A bear. And the bear and an otter talk to you, but you feel better.
Better. And then you go work on the oil rigs, and then it's over.
Yeah. Exactly that.
You know, I I like to bring this up all the time, but there was a woman on one time who was a can can dancer up in, like, Northern Canada. And I was always, like like, just taken with that idea. She was she was just in a, like, a, like, a CD bar just, like, you know, shaking her ass
trying to get can can Yeah. Canada. Yeah.
Trying to get trying to get some some gold coins thrown out at the stage. I I don't think she did it long, but it was just the way she said it when she was like, was a can can dancer. I was like, get out of here. It's crazy. Wow.
Scott Plays Detective: Iron & Thyroid 59:07
Okay. Well, I am here's the things I'm worried about for you. Okay. I'm worried about your anemia. I think it's possibly still here.
I think you
should get Well, I'll get that blood work done.
Thank you. I think you should get a full thyroid panel while you're getting the iron panel just because your mom had type one, your birth mom had type one, and your kid has type one in celiac. So and you've had the endometriosis. I just feel like you're a you're a melting pot for something like that to happen. And
Probably.
And you you seem lovely, but you are struggling for, like, for your words.
Oh, I know. Yeah. Yeah. Yeah. It's been really bad.
Yeah.
It was perfect time for to, like, get on chest. Checked. You got your thyroid checked? What what how did that come back?
I think it was, well, it was under two.
The TSH was under two. Good. Good. I'm glad. See, I'm helping.
So then we then we got Yeah. Yeah. Then we get to anemia next. And now that I know you had you were anemic when they they I was gonna say when they hoisted out your
I was gonna say Just get rid of it, though.
You were anemic when they hoisted out your uterus, and they gave you an infusion. But those hospital infusions, I guarantee you, was one of the small bet, and it wasn't enough. I'm gonna guess. Okay. I'm betting my I'm gonna bet my my gold coin con dike can can
Bloonie?
Bloonies that you're anemic still. And that's why you're having brain fog right now.
Okay. That would make sense.
That's it all fits. And if I'm wrong, this was free. So what do you gotta do about it? But, like, I I really think that I think you call the doctor up and say, hey. I think I might still be anemic.
I need another test.
They did say, like, you could potentially need more.
Well, then what You know? God. Don't make me curse at you, Lana. Why didn't you do the thing then?
I don't know. I hate needles.
As much as you hate not being able to find simple words during conversation?
I can usually cover it up better, I feel. Focused, like Yeah.
Yeah. No. Yeah.
I know.
Yeah. You're you what do you do?
I mean, I'm so like, I'm just more scared of needles than I am of anything. Like, I didn't even have epidural with my kids.
So Listen to me. I'll go with you. Alright? Well, not me. I'll send to your husband.
But, I mean, like, someone will go with you. You'll be cool. It'll be fine. It'll be free. Can I I'm gonna tell you something crazy?
No. This is embarrassing. It's okay. So I'm having I've I've, you know, I my dental health is much better now that I go to the dentist more frequently. But when I grew up, I never went to the dentist.
Like, I think the first time I went to the dentist, that was, like, '19. And people are like, oh my god. Where was he? In the Adirondacks? No.
I was in Pennsylvania. And so but, anyway, like, I've had a number of root canals over my lifetime, and I've had them long enough ago now that a couple of them are but they're time to you gotta recondition them. You gotta get in there and and shine
them need to get a crown.
Well, no. Have a crown. Gotta take the crown they gotta take the crown off, go back in, clean it up again, put a new post in, like, all this stuff. Right? Mhmm.
So Yeah. I've I've been doing that this year for two of them. I've got one finished, and I'm working on the second one. So I went to the dentist two days ago where he, in the back of my jaw, injected me twice so that he could pop off the temporary crown Yeah. Clean it out, put the post in, and put on a temp another temp crown, wait for the real crown to come in.
So he injects me twice. And then the next day and this is the part I was gonna be embarrassed about. Arden and I went to get our eyebrows threaded. So I'm gonna be recorded for something next week, and I wanted to make sure my eyebrows were good. And she was going to
Is painful?
Well, you're getting you'll get the hold on for the story. And and and then and she's going to some sort of a like a college mixer this weekend. Like, you know, they're spending the night at like a hotel and there's like a big thing in there. So she she's like, I have to go get my eyebrows on. Do you wanna go?
And I was like, my god. Yeah. I'm doing that thing for Omnipod next week. I wanna go. And so, like, we went.
While she was plucking out the the my eyebrows, I actually thought, this hurts more than going to the dentist to me. And the dentist is using a jacked up big needle, but he's just he's an he's an artist. Like, the man's an artist. He should be there should be a statue to him somewhere. Yeah.
But I don't want you to get you wrong. Like, it's not that like, five seconds after they're done doing the the eyebrows, it's over. It's not like it doesn't linger or anything like that. And so my point is, does getting your eyebrows threaded really hurt worse than being shot with a needle in your mouth? I don't think so, but I think it's, the anticipation of it.
It's definitely the anticipation.
Yeah.
Yeah. I I work in dental, actually.
No.
So people coming I'm I'm, like, the front, so I was doing admin.
Mhmm.
So you could definitely tell when people were coming in. They're very nervous, and, like, no one likes the dentist. No one's happy to be there. They're so much different when they leave had, like, people apologize and be like, I'm sorry how I was at the beginning of this appointment. I love
I love going to the dentist. It's so relaxing. Like, so like Yeah. Because, like, two and a half hour appointment to work on a, like, work on the root canal. Right?
I put my head back. I put some I go I go to sleep. Sometimes they gotta wake me up to move me around. They're like, Scott, can you turn your head? I'm like, oh, sorry.
So relaxed. So relaxed. I love the my dentist says no one's ever said this before. But when they're cleaning out the roots, they use this bit that kinda feels like it's it feels bumpy. I don't know another way to say it.
Like, it feels like it's Mhmm. And it it makes a different sound, and it almost feels bumpy while it's in there. And he gets done, and I'm like, are you are you putting out the roots right there? I said, yeah. I said, I love that feeling.
But you're not really feeling it. You just kind of sort of feel it?
It's like it feels like like look. I don't obviously know what he's doing, but it feels like because I can't see it. But it feels like he's taking a round item and putting it into a tubular thing and that it's kind of boring through it. And Yeah. I like the way it feels.
So, anyway, take don't take me. And then I'm at the the threading, and I'm like, oh, that hurt. I go walk out, Arnie goes, okay. I'm like, oh, it hurts so much. So
I've had that done.
Yeah. By the time you get to the car, it's over.
Yeah. You know?
But it's Good. Yeah. $7, by the way. Very realistic.
Well, let's keep there. I don't know if it'd be that cheap here.
Yeah. Well, maybe. Listen. Let me give you a good a good tip. Find an Indian population to do it for you.
Okay.
Really, they're Yeah.
See, I could see them being really good.
Very good. Very good. Nevertheless. Alright. Well, do you you know what to do now?
You know what you're gonna do?
Go get my blood test.
Doctor. Get my blood test. Make sure I'm not anemic. Get some more infusions. Feel better in a couple of months.
Probably send you an email and say thank you. That's probably how it
works.
Olive, Sewing & a Dream of Acreage 1:06:13
Right. And then and then you'll be able to, like, kinda, like, drill down on no pun intended on the kid's diabetes, get yourself some rest, and be okay. Are we worried about this other kid? Is he a ticking time bomb? Or she?
By the way, great name. Olive. Really great name.
Olive. Yeah. Yeah. Thanks.
Yeah. Yeah. Yep. Does she have anything going on or not so far?
No. Not that we know of. She seems okay, and I hope that it stays that way.
Yeah. No. Me too.
I always see, like, when other people are like, oh, my second type one diabetic child. I'm just like, I can't even I mean, we can't you can imagine it, but it's just one is enough to deal with.
No. Thank you. I'm okay.
Yeah. Yeah. I'm okay.
You can give that to somebody else.
Yeah. We'll be hard. We're good here.
We're good here. Everybody's fine. Thanks. Oh my gosh. Well, I would ask you if there's anything else that we should have talked about that we didn't, but I don't know how the hell you would remember.
So
Well, that's yeah. I wrote all down.
You wrote it all down. By the way, the beginning, she's like, but my notes are on my phone, and we're using my phone to record, and I can't go to my notes without shutting my phone off. And I was like, send them to your send them to your computer. And she was like, how is that gonna happen?
No. No. No. I knew how. I just couldn't exit out of you in my email.
Exit out of you in my email. It should be the name of my my autobiography. But seriously, is there anything that we didn't talk about that we should have? This was a little more about you than it was about the kid, but I I'm okay with was.
Yeah. And it it's funny because I even said that when I was talking to my husband, I'm like, who knows what avenue we are going to go down? Because listening to your podcast, it's you never know.
Yeah. Please.
I listen to it all the time while I'm sewing.
So Thank you. I appreciate it. With sewing? What are you sewing? What are making?
I sew and sell children's clothing.
Oh, wow. Is it extra warm? It
can be, like, really warm. How do you
how do you sell it?
What do mean how?
The Internet? You sell it on the corner? You you go to Chick fil A and do it with the marketing lot?
No. No. Sell it. What do you mean how?
What's your
Yeah. I do sell online. I'm not very good at getting the stuff up on there. So anytime people are like, oh, you have a website? I'm like, yeah.
Sort of. But I usually do markets around the city here. And then now that I've gotten quite a quite a good clientele, people just do a lot of
Yeah.
Custom orders. So I show them the fabric that I have, and then I have my website showing the kind of things that I could make, and then we just go from there. And I sew their children up lovely wardrobes.
Listen to me. What's your web address? How do the people find you? I don't normally pimp people's businesses, but this sounds lovely. What are we doing here?
Aa.com of some sort? What do you got?
Unfortunately, it is not a.com because I don't ship anywhere outside of Canada.
Sorry. Canadians listen to this. I just wanna go look at it. What's the address?
Oh, it is www.gabeandolive.ca.
Dot c a?
I usually
Who even knew that was real?
Use more of, like, my Instagram.
Oh, of course. What's your well, hold on. I'll tell people. Oh, this is nice. Hold on a second.
Oh, look at you. And there's moose on there. Of course, there's moose. Why would it's all you know about. Is this you in the photo?
What? Let me just I
feel like Do you not know your own website?
I
Oh my god, Imperial. Do you not know if this is you on your website or not?
Well, it's me.
Well, then just say yes.
I'm just saying. I was like, wait. I had
get to a fight in a second.
Oh, there I am.
So t shirts, tops, little skirt, top. Oh, that's cute. Look at you.
That's me. Oh my gosh.
Oh my gosh. Lovely. This is wonderful. You make all this yourself?
Yeah. Yeah. I do it all myself. I kind of learned from mostly the Internet or just kind of picking up my this one girl on my Facebook. I was kinda friends with her back in the day, and I kept seeing her stuff that she was making.
And I'm like, can you can I come over and you just show me how to use a serger? So she said, yes. And I went over there, and I, like, sewed something up, and I just went on from there.
And just ripped her off and knocked her out of business. Is that what you did?
Well, she always says that I've actually out what it whatever it hurt in her because I went to markets, now I sell to a bunch of people. So
Oh, lovely. Oh, look at this.
Outdone the teacher, I guess, she said.
Oh, look at this cardigan. You're you're really talented. This is wonderful.
Oh, thank you.
Yeah. Oh, that's cool.
Yeah. So and, like, I sell for my family, but I don't really sell a whole lot of adult stuff just because I mean, people say they want it, and then I'm like, this is how much. And they're like, oh, okay.
Never mind. I'm gonna go to Walmart, but thank you.
Yeah. Never mind.
It's funny they'll spend they'll spend it on their kids, but not on themselves.
Yeah. Kind of. But, mean, I feel like it's I don't know. The way my clothing is is a lot of it is it does actually last a a lot longer than maybe a typical outfit from the store.
Yeah. I would imagine.
My kids have still worn for, like, two to three years. So
I don't know. Thank god I don't have babies because if I showed this to my wife, we'd be Yeah. Paying the shipping.
I know. I'm kinda glad I started sewing after my kids were not babies anymore. Yeah. I started during COVID.
Alright. Well, listen, Canadians. Gabenolive.ca. You can go look yourself. Buy something.
Obviously, buy something from Lana. She needs she needs a steak. She gotta get her she gotta get her her iron up. Help her out a little bit. My gosh.
Well
Man, I need to get my iron up, and then maybe in, like, two years so that I can come back on here and I'll be a whole new unfoggy person.
Well, I was just gonna say, honestly, when you get this all figured out, I think I might like it if you came back on after you listened to yourself. Because it's possible you're gonna be like, oh my god. What the hell is going on? Because Great. Yeah.
No. Because I've gone through it. Like, I've had really low iron. And I'm telling you, like, you're doing shit you don't even realize you're doing. So Oh, no.
Yeah. All you go after I is check your
feel like well, I also do have anxiety, so that doesn't help things.
Well, do you know that come hold on a second while I teach you. Anxiety and anemia, think, go hand in hand. So if you are like, let's say you have silent celiac maybe or, you know, there's another reason that you're anemic, you could you could have low iron throughout your life. Yeah. And anemia can possibly make anxiety feel worse, and sometimes it can look like anxiety even when the main driver is just low iron, low b twelve blood loss, or another anemia cause.
Do you have do do you have a computer there in in Canada? You do. Right?
I do have a computer.
Yeah. Have you have you found the chat sheet PT yet and stuff like that? Yeah. Yeah. Just type
in I do know how to use that.
Just type in anemia impacts anxiety, and then just go read it. Okay. Okay? Because anemia may not cause anxiety in the emotional sense, but it can create body sensations that your brain interprets as danger, racing heart, breathlessness, shakiness, exhaustion, and that can trigger or amplify anxiety.
Oh, yeah.
You're like, oh, that's me. Want me to keep reading? Iron deficient anemia, especially can cause fatigue, shortness of breath, chest discomfort, fast heartbeat, dizziness, lightheadedness, cold hands or feet, and the symptoms often intensify as the deficiency gets worse. Do you have shortness of breath when you run up steps?
Not really. No. And I've started to work out. I go to a trainer.
So Okay. Just feel I feel like you just you just CBC, ferritin, iron, panel, b twelve, folate, thyroid test, and evaluate blood loss if the iron is low. Like, you're not you have you don't have any GI bleeding or anything like that. Right? No.
No. Do you still get your period without your uterus? Nope. No. Right?
See, that was the problem with that's why I was so low iron.
Yeah. Yeah. Yeah. You just need two more jackups. Two more bags up.
I tell you, two more bags and you're set. I'm not a doctor, and this is not advice. But two more bags and I think you're a different person.
Yeah. I definitely okay. You know what? I'm gonna call my doctor. I'm gonna get another blood work done and see how my ferritin is.
Everyone says it. With glow. Everyone says it. Not enough people email me back and say I did it. So
Do you want me to email you back?
I do, but you won't. Because no one ever does. Just a throwaway avatar in your life. I'm not a real person to you. That's fine.
Alright. I do not use avatars.
But did you like the movie with the blue things and the dragons?
No. I actually didn't.
Why not? Why why are you the only person that didn't like avatar?
I I don't know. But I remember everyone talking about how amazing it was, and I'm like, okay. I kinda found that boring. Okay.
I don't know. The ride at Disney is pretty awesome or wherever it is. I don't know where it is. Disney? Maybe.
Oh. It's a good ride.
Haven't been.
Yeah. Well, I mean, how are you gonna get out of the country?
I don't know.
Yeah. You don't have enough energy. You're not gonna make it.
I actually just have zero desire to travel right now.
Maybe you'll feel better after your iron's heart. Right now, I mean, the idea of getting on a pontoon boat and then taking a kayak to get to a bus, to get to an airport. I mean, how are you gonna it's a lot of work. And then
That sounds exhausting.
The last 50 miles are sled dog. Right? And then you're on your way, but it's not great. How did you end are you born there? How you I almost said, how do you end up there?
I was born in Saskatchewan, and I have not moved or, like, lived anywhere else other than Saskatchewan.
Interesting.
I almost moved to Alberta, but then I didn't, and I'm glad I didn't. And I like that I live out on an acreage out of the city.
How much I grew up on a farm. How much space?
Just, like, under three acres. It's small, but it I can see the stars, and the sunsets, and the sunrises, and it's glorious.
I'm not gonna argue with you. I looked at a house in the South, and I didn't have like, I wasn't really like, I wasn't like, show me a house. I was going through I'll I'll explain this to I was going through Tennessee on the way to Atlanta to do a talk in Atlanta for Touched by Type one, which by the way, went great. Touchedbytype1.org. Check it out.
And then I
Check it.
But I I had met I hope this is doesn't sound too obtuse, but I I went on a cruise in December to check out the ship that I'm taking everybody on
Right.
In June. And while I was on the ship, I met a woman who was a former American Idol contestant. She was singing on the It it it's just kinda funny. And and her name's Ashley Amber. She's might be somebody you recognize because she has, like, like, a really, like, a giant, like, afro.
So I think that's how people know her. Anyway Okay. She was singing on the ship. She and I were getting food at the same time on the ship, and somebody had kind of, like, accosted her. Like, somebody somebody recognized her from the being the singer, obviously, and then was talking to her, not meanly, but was really just monopolizing her time.
So I have kinda gone through that at diabetes events. I can tell the look on her face when she's like, I'm just trying to eat this food. Please leave me alone for five seconds. Right? I kinda I stepped in, and I was like, oh my god.
Hi. And I kind of just, like, hijacked the conversation. Then the woman felt the pressure. She excused herself and left. And then she looked at me like, oh god.
No. Was like, you and I went, hey. I don't really wanna talk to you. I was just saving you. Go ahead and eat your dinner.
And she she comes up to me afterwards. She goes, how did you know I needed to be safe? And I said, well, in certain situations, I'm more famous than anyone in the world. And and I was like, but not in many situations, just in very specific ones. I was like, and I I know the look of I'm just trying to eat this food, please.
I just I need five minutes. And then we started talking. That's amazing. Yeah. We started talking, and she's like, actually, I'm not gonna do the ships much longer.
I'm really gonna pivot to because this is how she makes her living. She sings on cruise ships. And and then she's like, I'm gonna start selling real estate in Tennessee. And she's like, I live in Nashville. And I was like, oh, that's one of the places I talked to my wife about moving to.
And so we just kinda kept in contact, and then I found myself traveling to Atlanta. And I said, crazy question. If I drove to Atlanta instead of flew there, if I spun through, could you just show me a couple of houses real quick? I'm not looking for a house. It will be a waste of your time.
But, like, can you would you? And she was nice enough to do it. So she just picked a couple of houses, and I didn't know where to pick or I I had no idea. Like, I hadn't looked into it at all. And I just followed her lead, and she put me on this piece of property.
It was five acres. And I it took a while to get from the road to the house. And then I walked the house, and I was like, this is really lovely. It was, like, new construction and everything. Was really nice.
And I walked out back, and I was making a video for Kelly who was not with me. I was gonna show her the house. And I got outside, and it struck me how silent it was outside. There was no noise anywhere. And then a bird chirped.
Not 20, not a thousand. And I and I realized I'm only listening to the bird chirping right now. And I could've yeah. I would've like, if I didn't have kids and a wife, I would've just been like, this is fine. I'll take this one, and I would've just stayed.
See you. Yeah.
Yeah. This is good. I'll be okay here.
Mhmm.
I I I take your point because I've been bugging my family incessantly about it since then. I was like, come on. Yeah. This is the art. And I'm like, I know you probably love your boyfriend.
I'm like, but you could find another guy. Like, let's go. So and
I mean, I feel like had I been 20, I would not have wanted to move out here. I was like, yes. City life. Woo. Mhmm.
And then it got into my later years, like, 35, and I'm like, hey. You know what? I think we could move out to an acreage. And then finally, it happened, like, a year and a half ago.
Yeah. I'm in. I'll leave right now. Like, I'll I'll you got I'll sell this and leave. You can have it as is.
I'll buy a new bed when I get there. Like, I'm I'd be happy I'd be happy to go. So I don't think I'll
I got a large
ever gonna happen.
Large garden. It's Yeah. It's awesome.
I said to my wife, I was like, you could plant something. I'm like, you're always talking about it. You could actually do it. You know? Like, you already
worked food or just flowers?
Any who cares? Right? Get a chicken. I don't know.
There's a fox. A fox just ran by our yard.
Oh, what does the fox say? Did it say anything?
What does the fox say? I know. He's just running. He's so cute.
Look at that. That's he was.
So, like, ADHD, just like a fox.
Oh my god. Fox. I was like, when you said that, I thought I thought you were pretending that a fox ran by during my my experience. I thought you were adding
It's not very often that we see a fox. We see lots of deer, but a fox is not as common.
Oh my.
They're around, but I just don't see them.
Yeah. Well, anyway, I guess there's a long way of saying if you're looking for a realtor in the Nashville area, Ashley Amber. She really is Good to know. Fantastic. Alright.
I'm gonna let you go now. Hold on a second. Okay. Stay with me. The podcast episode that you just enjoyed was sponsored by Eversense CGM.
They make the Eversense three sixty five. That thing lasts a whole year. One insertion? Every year? Come on.
You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox. 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 Kontoor 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 Kontoor and all of the sponsors. A huge thanks to today's sponsor, AbleNow. Able Now offers tax advantaged able accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify because of ongoing medical needs. With Able Now, you can save for a wide range of disability related expenses without affecting eligibility for certain disability benefits such as Medicaid.
And thanks to recent federal law updates, more people are eligible than ever before. Learn more and check your eligibilityablenow.com. You spell that ablenow.com. There's links in the show notes and links at juiceboxpodcast.com.
- Type 1 rode in behind celiac. Gabriel’s diabetes was caught at a routine celiac follow-up draw — his a1c had jumped from about 4.8 to 7.8 in a few months — and they escaped DKA only because that bloodwork was already scheduled. With one autoimmune diagnosis, staying alert for the next one matters.
- A DIY closed loop (AAPS) is powerful but has rough edges. Their pain point: a compression false-low makes the algorithm cut basal, then it over-boluses the rebound. Their fix is a temp target. Knowing your system’s failure modes — and how to override them — is part of looping.
- Caregiver health is part of the kid’s care. Scott walked Lana through brain fog, fatigue, hair loss, and weight gain that may trace to iron deficiency (one transfusion is often not enough) and possibly thyroid — and noted anemia can mimic or amplify anxiety. Worth a full panel: CBC, ferritin, iron, B12, folate, thyroid. Many clinicians aim for ferritin ≥70 in women. Decisions belong with your doctor.
- Low-carb helped, until it didn’t. They leaned keto/low-carb early (easier with celiac), but Gabriel wasn’t gaining weight, so they reintroduced carbs. Growth comes first — a number on the meter isn’t worth stalling a kid’s development.
- An a1c of 6.0 is excellent — and self-criticism is common anyway. Lana hoped for the 5s and felt let down by a 6.0. Naming that pattern matters as much as the number; the goal is health and sustainability, not perfection.
- AbleNow — Tax-advantaged ABLE savings accounts for eligible people with disabilities — an episode sponsor.
- Contour Next Gen — The blood-glucose meter Arden carries — an episode sponsor. May be cheaper in cash than your insurance meter.
- Eversense 365 — The one-year implantable CGM — an episode sponsor.
- Gabe & Olive (Lana’s shop) — Lana’s handmade children’s clothing, named for her kids — Canadian shipping. Scott insisted we share it.
- AndroidAPS (AAPS) — The open-source DIY automated insulin delivery system Lana’s husband John set up.
- Bold Beginnings Series — The newly-diagnosed series Scott points listeners to.
#1889 Let Them Eat Cake
A mom's thyroid cancer, then her breastfed 10-month-old diagnosed with type 1 in DKA, a diabetes educator who said feed the baby cake, celiac, and years of fighting for care.
Let Them Eat Cake
Cold Open & Sponsors 0:00
Welcome back, friends, to another episode of the juice box podcast.
I had papillary thyroid cancer.
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. Are you starting to see patterns, but you can't quite make sense of them? You're like, oh, if I bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more?
If you're starting to have those thoughts, if you're starting to think, this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes pro tip series from the Juice Box podcast. It begins at episode 1,000. You can also find it at juiceboxpodcast.com up in the menu, and you can find a list in the private Facebook group.
Just check right under the featured tab at the top. It'll show you lists of a ton of stuff, including the pro tip series, which runs from episode 1,000 to 1,025. 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 episode you're about to listen to is sponsored by Tandem Mobi, the impressively small insulin pump. Tandem Mobi features Tandem's newest algorithm, Control IQ Plus technology. It's designed for greater discretion, more freedom, and improved time and range. Learn more and get started today at tandemdiabetes.com/juicebox. The podcast is also sponsored today by Touched by Type One.
Please take a moment to learn more about them at touchedbytype1.org on Facebook and Instagram. Touchedbytype1.org. Check out their many programs, their annual conference, awareness campaign, their d box program, dancing for diabetes. They have a dance program for local kids, a golf night, and so much more. Touchedbytype1.org.
You're looking to help or you wanna see people helping people with type one, you want touched by type1.org. I'm gonna hit record now. Okay? I don't usually do this. Say testing.
Testing.
Okay. Good. So, I'm gonna do the intake part on the recording. You're the first time I've ever done this, I think.
Okay.
So so Aileen's here. She was nice enough to jump on when my recording for the day had to cancel at the last minute. I went to the Facebook group, and there is a my gosh. There's 88 comments in that in that post already. And looking for somebody who could literally jump on right now and and record a podcast.
So thank you very much for doing that.
You're welcome.
You're very nervous, you said?
Yes.
Please don't be. Please don't be. Here's what I usually do before we start recording. I say, do you have any questions or concerns or anything that you'd like to ask me before we record?
No. I just will preface this that, like, my memory for almost nine years ago now is not a lot of the questions you ask sometimes about diagnosis. Like That's okay. Peptide or that kind of stuff. I don't really know the details.
I don't either. It's not it's not court. You'll be fine. About names, you can use your full name. I'm gonna ask you to introduce yourself in a minute.
Right? You can use your full name if you want to. I don't think you need to. If you're compelled to, I'm not gonna stop you. People in your life, it would be better to say my neighbor or my doctor than to use people's names, a, because they might not want their name used, and, b, because it's actually confusing for people.
Just, you know, my neighbor makes a lot of sense to people. I can't be your guardrail. So if you start saying crazy shit, you know what I mean, like, that wasn't me. I'm just gonna ask I'm just gonna answer, you know, and ask questions. Everyone says, oh, there's nothing crazy about my life, and then inevitably somebody says something absolutely insane.
So so if if we're talking about, like, you know, your great grandfather's war crimes one day, like, you you know, it wasn't me. You you you got me there. Okay?
Okay.
Sounds good. Yes. I'm gonna ask you to collect yourself and introduce yourself the way you want to be known. And then I'll I'll ask you a question, and we'll keep talking.
Sounds good.
Alright. And, Rob, you can leave all this in when you're editing. Go ahead.
Aileen & the Family History 5:02
Hi. My name is Aileen. I am a mother to a type one diabetic daughter who will be nine very shortly, and we actually just passed her ninth anniversary of diagnosis because she was diagnosed at 10 old. Wow. And she also has celiac disease.
Oh my goodness. Is there other, autoimmune in your family?
Nothing that's been clearly diagnosed because we have a lot of people that are too scared to go to doctors.
So there are people you feel like might have celiac?
Possibly. We all did get genetic testing after she was diagnosed per her doctor. I have one of the genes, and they said it could, at some point, potentially be become celiac, but they said unlikely because of my age. Okay. But no one that's been officially diagnosed with celiac in our family.
No one that's been type one. One very distant family member at some point mentioned it, but no one else can say, like, oh, yeah. She definitely did. It was, like, my great grandmother's, like, great niece or something totally random.
With with the other people in your life that are afraid to go to the doctor, what do you think they'd find if they went?
I believe my mom probably has, like, psoriasis, which I believe is autoimmune. And I believe on my husband's side, there is a couple of people that have some thyroid stuff. I just don't know exactly if they have diagnosis or what exactly.
Gotcha. Tired, hair falling out, overweight, won't go to the doctor?
Yes. I I do know my brother-in-law prefers to eat gluten free, but I again, I don't think there was anything, like, officially.
That's a thing he discovered one day in the bathroom. Yeah. While he was talking to Jesus, probably. I gotcha. Well, I why won't people take a pill?
I don't know. I have to take one myself. It's pretty simple.
Yeah. What do you have?
I had papillary thyroid cancer.
Did you? Oh, so you're taking Synthroid?
Yes.
Oh, okay. How old were you when that happened?
It was six months prior to her diagnosis. So Right after you gave birth. Year.
No. But right after you gave birth, though.
Yes. She was born at the very May 2017. I found out in August 2017 that I had cancer.
Oh my gosh. Is was she your first?
She is my third daughter. Your third daughter? Four. Okay. Yes.
How old were you when you had her?
Again, I'm gonna have to do that.
It's nine years ago. It's easy. Take take 10 off and then add one back.
Oh, okay. Yeah. That makes it easier. So then 42 minus 10.
32.
32, and then it went back to 33.
You were 33. Yeah. Yeah. See? It's easy.
Math is not tough. How how old are your children? She's nine now, but how old are your other two?
I have a 13 year old daughter. I have an 11 year old daughter. She is my nine year old, and then she also has a six year old brother.
Okay. Wait. Wait. Wait. Hold on.
You how many kids do you have?
Four total.
Four. I didn't know about the boy, I guess. Okay. And the rest of them not having any issues?
Currently, no. My oldest, we have actually taken her to my daughter's endocrine for a follow-up because she has some symptoms of some stuff, and I was not happy with her thyroid levels when the pediatrician ran it for me.
Mhmm.
And I was like, with our family history, I really don't feel comfortable with this number. I think it was, like, a 3.7.
Oh, no. Yeah. That might need meds. Does she have symptoms?
Yes.
Yeah. She needs meds,
well, they would not they would not, agree with me there. So I took her to the endocrine for follow-up, and I think they had, like, went down a little bit. So she said right now, we're not going to medicate. But it's almost been a year, so we might follow-up again.
I would tell that doctor two point one or over with symptoms, I wanna do something. Not up to
I said I would feel pretty pretty bad if that was my numbers.
Yeah. Yes. Well, yeah, keep pushing if you can. I know it's it's exhausting to fight with them. But, you know, the thing the simplest thing to do would you could just call around to other offices, give them a two sentence explainer about what's happening, and say, is there a doctor in the practice that would be comfortable, being a little more forward thinking for my daughter?
And then just wait till because one of them will say yes, and then you might have to hang up on a few people. But one of them will say yes, and then you run her in and they'll give her the meds.
Yeah. She's she seems, like, more tired than her peers. She definitely has like, when she brushes her hair, I see her hairbrush, and I'm just like, that's not normal.
Is she gaining weight?
A little bit. Yeah. Yeah. But she's also of that age where you're supposed to gain, like, kind of a lot of weight that, like, prepubescent kinda
Yeah. No. I get what you're saying. But that even this tiredness in the hair and everything, it's just you know it's coming if it's not full force on her already. Imagine if she had more imagine if this person who canceled on me at the last minute, whose name I won't mention, but damn you, lady.
And then I was already I was excited to talk. And but now I got Aileen. It's much better. Oh. But imagine imagine if she just had more energy.
Like, how great that would be for her.
I agree. Yeah. I I I try. I I've listened to your thyroid episodes. I even I'm like, well, I'm also in New Jersey like you, so I'm like, can I get into Scott's doctor
Can I tell you what?
That you mentioned.
She's out and z. She's she Let's talk about the Tandem Mobi insulin pump from today's sponsor, Tandem Diabetes Care. Their newest algorithm, Control IQ plus technology and the new Tandem Mobi pump offer you unique opportunities to have better control. It's the only system with auto bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. Tandem Mobi gives you more discretion, freedom, and options for how to manage your diabetes.
This is their best algorithm ever, and they'd like you to check it out at tandemdiabetes.com/juicebox. When you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's gonna help you learn about Tandem's tiny pump that's big on control. Tandemdiabetes.com/juicebox. The Tandem Mobi system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range, and address high blood sugars with auto bolus. You've probably heard me talk about US Med and how simple it is to reorder with US Med using their email system.
But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email because I don't trust myself a 100%. So one time, I didn't respond to the email, and the phone rings at the house. It's like, ring. You know how it works.
And I picked it up. I was like, hello? And it was just the recording. It was like, US med. Doesn't actually sound like that, but you know what I'm saying.
It said, hey. You're, I don't remember exactly what it says, but it's basically like, hey. Your order's ready. You want us to send it? Push this button if you want us to send it.
Or if you'd like to wait, I think it it lets you put it off, like, a couple of weeks or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Usmed.com/juicebox or call (888) 721-1514.
Get your free benefits checked now and get started with US med. Dexcom, Omnipod, Tandem, Freestyle, they've got all your favorites. Even that new islet pump. Check them out now at usmed.com/juicebox or by calling (888) 721-1514. There are links in the show notes of your podcast player and links at juiceboxpodcast.com to US Med and to all of the sponsors.
She broke our heart. She she actually has been a lovely part of our lives. But, her husband got this really kind of fancy job with the the French government, and they are moving. And she is she's out. She's not gonna practice anymore.
There goes my luck of trying to get into a good doctor.
Yeah. Yeah. Well, actually, Arden and I are are gonna throw a dart at a board today and pick an endo for her, so we'll we'll see what happens with that. But but yeah. No.
She she just got an opportunity, and she's like, I'm gonna retire, and she's off. And and we just had all of our blood work run for the kids and everybody. So I was texting with her the other day, and she's like, you just caught me. Ten more days, and I'm done. And then she's like, follow-up with me on this one thing.
I tried to text her last night, and her phone didn't work. And I was like, uh-oh. I so I just switched I switched I switched over to email. Was like, she is really getting out of here. Oh my gosh.
Well, I I wish you luck with that. So Thank you. Yeah. Yeah. So tell me a little bit, was your pregnancy fairly common for I mean, you had had a number of them already.
So how how did it go right before the diagnosis your diagnosis, I mean?
Her Own Cancer, Right After Giving Birth 14:05
Yeah. The pregnancy was great. I believe it was while I was very early on in the pregnancy. I had switched primary doctors, and I kind of did have some complaints of thyroid esque type symptoms Mhmm. Saying, like, I was tired and hair loss and that sort of stuff.
But, again, I was newly pregnant, so they kind of were like, you're borderline. We could put you on a low dose Synthroid kind of thing. So I said yes, and we increased it, you know, with weight gain, you kind of have to change your dosing sometimes. So we increased that as needed, and I was feeling pretty good. And they said to come in, I believe it was three months post postpartum was when they would check again because then you have the weight loss, so you would need a a change in dose again.
Yeah. Yeah.
And so I went in, and I believe it was the nurse practitioner even asked, like, have you had an ultrasound since being on this medication since it's been just about a year, a little over a year? And I said, no. She said, well, that's kinda common practice. And I was like, oh, okay. So she gave me a script upon leaving for an ultrasound, and I went for that pretty quickly.
And I remember while I was lying there when they were doing the ultrasound because I've now had three pregnancies and ultrasounds many, many a times, I said, they're taking an awful lot of pictures. This is something's wrong. And I went home and I started googling, and I was like, have thyroid cancer. That's it. Wow.
Look at you.
So I was lucky enough that one of my sorority sisters well, not lucky she had it, but lucky enough that I had someone to reach out to because I had recalled a sorority sister that had thyroid cancer after delivering her child. And I reached out to her even before I officially had gotten the diagnosis and was like, I need all your information. I'm about to, you know, drive myself insane googling and being scared. So I was lucky to have a resource in a sorority sister, and the ultrasound did come back. Again, another fortunate thing, I believe that they normally wouldn't biopsy until the nodules are more than one centimeter, and mine was, like, point 99.
Mhmm.
And they were like, that's close enough, and you have a couple others. Let's send you for a biopsy. So I went for a biopsy, and even that endocrinologist that was doing the biopsy told me that the pattern of my nodules were not consistent with cancer, but sure, she'll still biopsy. So now I had an ultrasound that seemed kind of not wasn't going to be like, it was kinda offhandedly like, hey. You should do this.
Yeah. Then
then even after the ultrasound results, they were like, it's close enough. Let's do this. Now I have an endocrinologist telling me, not not the pattern of thyroid cancer, but we're still gonna biopsy it. And it wound up being, yes, cancerous. They did not biopsy one of the other nodules because your thyroid looks like a butterfly.
Yeah. They biopsied the nodules on the right half, but not the left half because that was the biggest one, and they were able to get two of them at the same time. Mhmm. And they said that when they do the surgery to remove the thyroid, they will then test the pathology of the other nodules, and it wound up being that all of them were cancerous. Wow.
So they removed the entire thyroid at that point.
No kidding. And you're dragging four kids around with you at these doctor's appointments?
Three. But yes.
Did it make you take the baby? That was nice.
No. I so a lot of times, I did take them with me to the biopsy. They actually didn't tell me that I should've had someone to be able to drive me home because you wouldn't be able to turn your neck.
Oh.
And I was like and I was like, no. No. No. I said, I got a babysitter. You are doing this now.
I said, I will figure out how to get home. I will not make turns. I will drive straight.
I have a babysitter. I'll sit out in the hall if you need me to for a day or so, but I'm I'm not going home and coming back here. You don't understand?
Yes. I was like, it is too difficult.
Were you having any postpartum symptoms at the same time?
Nothing crazy. No. I was I was okay. That just made me a nervous wreck thinking about because the other thing about papillary thyroid cancer is that they cannot tell, at least my understanding the way it was explained to me unless things changed or I was told wrong. They cannot tell if it had spread to your lymph nodes through any sort of testing.
That's something that you find out in surgery.
Oh, fine. Jesus.
Right. So I didn't know if I was gonna be able to continue nursing my daughter. Mhmm. Or
if you'd wake up with more more cancer than you knew about.
Right. And if I woke up, if I would need radiation, which would also mean isolation from my family, so we kind of needed to have a plan in place for where they would be living or I would be living. If I needed to get the radiation, I wouldn't have been able to change the baby's diapers. Like, I would you're not supposed to even share, like, a toilet with other people when you're going through that. So there was a lot of thinking and planning for scenarios that you didn't even know if you were gonna need.
Right. I wonder why you can't share a toilet.
I'm not sure. I just know that, like, you like, you need to be, like, completely kind of isolated. Radiation?
Yeah. Do think it would shrink testicles? I
don't know. I that would
be a great service for older men.
I mean, I could be recalling slightly wrong. I just know, like, you're supposed to, like, really be, like, away from other people.
No. No. I've heard that before too. I I am interest I'm not I'm not interested enough to sit up and check, but I am interested.
You're not putting that in your chat, GBT? I'm not.
No. I was like, it's interesting. I'll think about it later, but I'm not gonna find out now. I'm I'm happy enough with the saggy balls joke, and I can move on. So well, wow.
That's so much. It just it it really does feel like a lot, but that's nine years ago now.
Yes. And that was so I had this we found out in August, and I had the surgery that October Mhmm. Of 2017, and then my daughter was diagnosed 04/02/2018, so less than six months after my surgery.
Oh, just when you were relaxed and thinking, hey. I'm not gonna die. Everything's gonna be okay.
Right. Exactly. I, you know, I stopped right in the wheel.
What what was what was everybody getting? Was it or was it depressing? I think my will would be depressing. I'd start writing, like, I have nothing to give people.
Yeah. No. It was more like worrying about who would take care of my kids. No. Those
yeah. Well, listen. I I hear you.
I I had a lot of them.
We I had a lot. When we sat down and did that, I I I definitely shouldn't say this, but you start going through people in your family. You're like, no. No. Then you get the one you're like, I mean, I guess this is acceptable.
I know.
And I'm sure they're thinking that about me while they're doing the same thing. They're probably going through it like, oh, no. No. No. No.
The Baby Gets Sick 20:53
Oh my gosh. Wow. Okay. So how did the diagnosis come up for your daughter? What was the first I mean, she's only a few months old.
What's the indications?
Yes. So her oldest sister was just in pre k four. It was her first experience at school, and then the middle daughter was still at home with us. And so when Ainslie was oh, and sorry. My husband also worked nights night shift at the time.
Mhmm.
So I was doing a lot of just kinda, like, co sleeping, nursing overnight, like Yeah. Minimal getting up out of bed for myself. So I didn't really notice a lot of the symptoms until, like, hindsight when you talk about it because, you know, she wasn't getting a bottle where I could see how many ounces she was taking in. I wasn't really counting how many times we woke up because I kind of was just like Exhausting. Like I said, I wasn't getting in and out of bed.
Yeah.
But so her oldest sister was in school, and I don't recall her coming home being sick. But when Ainsley got sick and was vomiting one night, I kinda was like, oh, great. Like, we just brought home a bug from school type of thing. Mhmm. And our pediatrician at the time in the past had let my older daughters use it's called Floristor.
It's a a probiotic, and it's a flavorless packet, you can mix it into applesauce, and it's supposed to be good when you have a stomach upset.
Okay.
And so I remember I called the pediatrician asking because on the box it says under one, do not give. And I was just like, should I she's under one. Can I not give this to her? And the pediatrician said no. And I was like, okay.
Cool. And they said, do you wanna come in? And silly me, said no. I was just like, no. No.
It's okay. It's just a stomach bug. I don't need to come in. I just really want to know about if we could use the Floor Store. And so I I didn't go.
I didn't even take my my sick kid to the doctor on the day of her diagnosis.
Well, that happens to everybody. You know that. You've been listening for a while. Right? Yes.
Yeah.
Yeah. So we kinda dealt with it at home for a little bit, and I just remember I was, like, pacing. I I did a lot of baby wearing since she was the third, and I was pacing because she was just being so unsettled. Like, she was just tossing and turning in her sleep and just restlessness. Like, she wasn't necessarily crying, and so it was just a couple of nights of that.
Then then the vomiting came, and I remember that it was a Friday night, and I was pacing again, waiting for my husband to kinda come home. And then she threw up everywhere, like, all over our bed, and I was like, great. Now he's gonna come home from a a shift, and I need to make this whole bed so he can get to sleep. And at the time, my parents lived about forty five minutes away. So that morning, I remember I called my mom, and I was just like, I was up all night.
I have so much laundry. She has, like, no clothes left. We have no sheets left. I'm like, it's the birthday party today. That's what I posted about you.
I guess I should also add that into my long winded story. My all my children have similar time frame birthdays, so we were doing a huge family birthday party at my in laws house.
And that was that day?
That was that day, that Saturday. Okay. So I was like, mom, I need you to come out here. At the very least, that way I can go and, like, watch the girls blow out their birthday cake, and you stay with Ainsley since she's so sick. I was like, but I I definitely need help.
And and
I I by the way, I'm dying for that day when my kids admit finally that I'm reasonably helpful to them. That that your mom must have been thrilled, not about the baby being sick and missing the part and everything. She she was probably just like, I knew it. I knew they'd need me again.
Well, my parents were still both still working at the time. They weren't retired, so I was lucky that it was a Saturday. Oh, oh,
I see. I see. So she if you call her the day before, she'd be like, I'm at work.
I can't help you. Yeah. Yeah. Yeah. Me too.
Okay. So at this point, when you're calling your mom, it's really more functional, though, about the day, right, about the laundry and the preparation and not missing things. You're still not thinking something's really wrong with the baby?
Not not at the exact moment I called her because I called her kinda like a 9AM ish type thing because I was trying to let my husband sleep before he had to be up. And Right. You know, of course, I had three kids at this point under five, so, like, they all were up. So 9AM felt pretty late in the day. Yeah.
I know how you
feel. So yeah. So she started to head out. Like I said, it took between forty five minutes to an hour. At that point, though, she threw up a whole bunch more, and I remember I was like, it's a Saturday.
They close at, like, one, like, whatever their shorter office hours were. So I called back the pediatrician now, and I was like, this is no longer normal. And they said they said, you know what? Honestly, if she's been throwing up that much, we don't think you should come here anymore. Even if it is a stomach bug, you're gonna need IV fluids.
Just go straight to the hospital at this point. Okay. So I waited for my mom to get there and sent my husband and my other two daughters to the birthday party. And I was like, don't worry. She's coming.
It's just fluids. It's just a stomach bug. We'll be in and out. Like, we'll be there for cake type thing. Mhmm.
I love your Jersey approach to everything. You're like, it's gonna be fine. We'll just keep doing it. Everything's terrible, but I won't stop.
Oh, well, actually, we were in New York at the time, and our house was sold. We didn't have a new house, so that just adds a layer.
Oh my gosh.
By the way.
Jeez.
Yeah. So we had, like, half a house packed up into pods.
Shit show. Oh my god. Yeah. That's terrible.
It was, like, everything at once.
Yeah. No kidding.
Yeah. So and I remember driving to the hospital is where I gave birth to all three girls. And my mom was there, and she fell asleep in the car seat. And I was like, maybe we don't have to go. She's sleeping.
She's probably better. Then And I was like, no. It's okay. I'm gonna we're gonna still go. You know?
Yeah. But at least she's no longer crying. She's no longer vomiting, like, whatever. And we get to the emergency room, and it was packed. And because she wasn't crying, there was nothing in her airway.
I told them what I thought it was, and, you know, they kinda were just like, okay. Sit and wait. So I I don't remember how long we waited, but it was a couple of hours. And then when we finally got taken back, that's when it felt like a TV show.
Right.
When they must have done ran her blood sugar and couldn't believe it, and neither could I.
Yeah. I realized they had a baby in, like, serious DK just sitting out in chairs for hours.
Yes. Yep.
Gosh. Did
she pages over the loud system. I remember them being, like, step back and just people flooding the area, then throwing, you know, questions at me. Like, is there anyone in your family that's a diabetic? Do you know what type one is? I was like, well, what like.
Trying to figure out via context. Oh my gosh.
Yeah. And the on call endocrinologist again, because it was a Saturday, was apparently at her child's soccer game. So they kinda were like, this is what we think it is. We think it's diabetes, but doctor so and so is she's she's coming in as soon as possible. She's on her way.
And But her son's the goalie, so we're gonna have to wait a little bit. He's so proud. Yeah. Wow. My gosh.
Did she I mean, I don't wanna I mean, it's been nine years, so I imagine you can handle it. But did she almost die?
I remember them like, again, I was nursing. She was exclusively breastfed at this point still. Mhmm. And I was just like, she hasn't eaten in hours. And I was like I was like, does she need to eat?
Is she okay? And they were just like, we need to save her life first. They were like, do not worry about that. Like and I was like, well, I thought eating needed to be done for living too, but, like, they were they were just like, kinda like, yeah, we need to save her life before anything. And I think she was hooked up to the all the different stuff.
It was over forty eight hours before they let me hold her, touch her, do anything. And they didn't teach me teach me anything about diabetes. I didn't do anything. They were just kinda like, she needs to be off all of this equipment first before you can even know anything about diabetes.
Yeah. Well, they did they those people did a great job saving her. I it sounds like really cool.
They Yes. Wow. We were very very lucky, I guess, that the pediatrician at that point didn't even delay us. Like, I didn't go to a pediatrician to then be sent to the hospital.
Yeah. To add extra time into the steps and everything. Wow my gosh. Woah. Jeez.
That's a lot. Did you was there psychological, like, impact from that afterwards? Did you find yourself, like, nervous or anxious or is there trauma
that you
took from it?
I knew nothing about type one diabetes. So I will say, especially with how young she was, and now I know I was totally wrong, but at the time, you're just like, oh my gosh. Her life is not gonna be normal. She won't be like, how can you go to school? How can we go on vacations?
Like, is she gonna be able to go away to college? Like, just like when you think like, everyone says when they have a kid, they're like, do want a boy or girl? And everyone always says, you just want a healthy baby. Like, that's like, that just, like, made this so much more true. Like, especially even having a kid after her was just like, I don't care.
Just want a healthy baby because, like, it's just so scary to think about the alternatives. And so I just kinda sat in that for, like, two days. Like, I I think I left the bedside once to quickly shower and say hi to my other kids. Yeah. How was
the birthday party?
It looked cute. I saw pictures.
I saw
pictures. Oh my gosh. The family did a great job making them feel loved and special.
Nice. I bet you the party the next year was huge.
We all don't live near each other anymore, and we got to this was the first time there's nine grandchildren spread out across The US, and we met up in the Poconos. And it was the first time they were all together, And there's there's a lot of them that are born in April.
Day hold on. That day was a meetup from around the country?
No. No. That was this more year. Recently. Okay.
Okay. Alright. I was like, I I don't see how that sort of getting worse. Okay. But so since since then, like, you guys have all kinda, like, spread out a little bit.
Yeah. So we we have, like, kinda we try and get together once a once a year if we can. Nice. But our family from Texas was able to join us this year. Oh, very nice.
So yeah. Because I have my daughter is the very end of March, then I have my son is April 2, and my other daughter is April 15. My husband is April 14. My niece is, like, the twenty second. My nephew is the sixth.
My father-in-law is the sixth. I have a sister-in-law that's the seventh. So we literally celebrated, like, 10 birthdays at once this year.
Yeah. I'm gonna move on. I wanna ask you about raising a baby with type one. But first, I I'm so confused and it's meaningless to the story, but I wanna understand. Is this is your son from another marriage for your husband?
Or, like, you talk you you don't when you lump them all together, he's not there usually. I'm trying to figure out what that's about.
Oh, he no. He's the same same family. It's just, like, I guess, because he came after the diagnosis.
Oh, Oh, okay. I see. I see. That's why he's not in the stories. Okay.
Alright. Sorry. I kept thinking, like, does she not like that kid? Because she's really
No. He's he is a funny you would you would find him funny.
Oh, awesome. Okay. Cool. So, I mean, nine years ago, what's it like raising a 10 old with type one diabetes? Like, what when you finally get some knowledge, what does it look like, and and how did it actually work out in reality?
It was so confusing. So, again, I know I said I'm in New Jersey, but at the time, we were in New York for about a month, a month and a half, maybe post diagnosis. So we had when you get diagnosed in the hospital, at least there, I think it's the same everywhere. Usually, whichever on call endocrinologist is there, that's, like, kinda who your doctor is unless you choose to switch. Okay.
A Teaching Hospital & the Cake Advice 33:19
So we had this lovely, I don't even remember her name, female doctor. She seemed great. However, it was a teaching hospital. And whenever I called the on call, I got a lot of young male residents that knew nothing about nursing. So it was very, very hard to call and be like, I just breastfed.
What do I do? Her numbers are this. And they'd be like, well, how much milk? I'm And like, I don't know. I breastfed.
And they're like, what do you mean you don't know? And
Well, it's not it's not clear. I can't see through it. Yeah.
Yeah. Yeah. So And they just I felt like they were constantly trying to tell me not to nurse her. And I was like, well, when you're hungry, do you eat? Like Oh, because they didn't
have an answer. They're like, you know what the problem is? It's that milk you're giving her.
Yes. They were trying to very much encourage me to stop nursing. I felt there was a big push, not necessarily from the doctor, but from when I was making these phone calls from people that really didn't have good answers, I guess. Yeah.
Wow. That sucks. My gosh.
And then we also had a horrible, I guess, was the diabetes educator. She was a bad experience too. I'm glad I only had the one appointment with her. Again, this doctor seemed amazing, but I guess just the way this particular hospital system worked, I didn't get much face time with her in the month and a half. Yes.
She The
person who knew were didn't talk to you.
Right.
Yeah. What was the you you not many people called, like, the medical staff horrible. Like, what what happened with that one person that you were happy only to have seen once?
So I will again preface this with that my child was 10 old Yeah. Exclusively breastfed, and we had started baby led weaning, which is basically just like you give your child softer foods, but whole foods like bananas, or if you soften up apple in the microwave, you can mash up, like, sweet potato, avocado, just regular food. We didn't do baby food or the baby cereal. Mhmm. And you just let them kind of explore it and eat it however much they want.
Like, you just kinda put it on their plate, if they eat it, they eat it. If they don't, they don't. So she was getting almost all of her nutrition from breast milk still, and we met with this CDE that told me because I we were having issues where I couldn't give her insulin. Her carb ratio, I believe, was one to 60.
Okay.
So for even a half a unit, that's obviously 30 carbs. My kid was not eating even close to 30 carbs.
Yeah. Yeah.
So she told me I should give my kid cake to try and get to give her enough insulin. And I was just like
She said breastfeed her and then get give her cake to get her up to 30 carbs.
Yeah. She recommended she's like, I don't know. Why don't you just go get, like, some Entenmann's cake or something? And I was just like, no. Wait.
She actually said Entenmann's? Yes.
Is that is that local to us? Is that a thing not everybody would know about?
I I don't know. But I was just like, you you clearly like, no. I'm not giving my kid cake for breakfast just to give her a half a unit of insulin.
You just say, lady, I'm a person who just said self led eating, and you think I'm gonna give my kid a prepackaged cupcake? Is that what you thought was gonna happen?
At least at least it was a soft food. I don't know.
Was she young?
She was, but she had type one herself. But, I mean and I don't judge anyone that wants to eat that. I just I was still learning everything myself.
Right.
And I was just like, I'm trying to feed my kid healthy. Like, no.
You you know, it's probably what she uses for her lows. Maybe that's why she said it. You know what I mean? How do you think she's can you imagine if she's listening right now? She's like, oh, that was me.
Mean, I sure hope she didn't give anybody else that advice. Again, I mean, maybe if it was like, oh, I couldn't reach 30 carbs with dinner, and it was like, okay. You're giving broccoli, then maybe give, like, a little bit of cake to help bump it in there. Like, she was just like, yeah. Like, just, I don't know.
Give give a slice of cake.
The good news here is is that your episode's gonna be called let them eat cake.
Oh, I like that. That's awesome.
My gosh. Okay. Alright. So your biggest problem is that that the the breastfeeding is not getting up to the level that will even be supported by a half unit of insulin. So, I mean, I was in this situation with Arden.
Arden was diagnosed when she was two years old, but she weighed, like, seventeen pounds on diagnosis day 19 when we left the hospital. And I had to teach myself how to inject, like, drops of insulin. So did you end up doing that, or what did you
We did try eyeballing to try and get what we were guesstimating like, well, what I was guesstimating to be even half of the half the unit by but, I mean, anyone that can take a syringe that's listening and look at that, that's very, very miniscule and hard to do. Yeah. In in a drop
is a is a it's a leap. You're doing your I I I don't know if you ever heard me talk about it, but I I once put insulin into a dish, and then I put food coloring into it so that I could see it. Then I drew it up, and then I would just practice pushing on the plunger till a drop came out. Like, so I could do it by eye or or without my eyes. Excuse me.
And so I'd watch. I'd feel the pressure, feel the pressure, feel the pressure. I'd be like, that's a drop right there. And then, of course, I didn't use the insulin with the food coloring in it. That was just for practice.
And then I would I would draw a little bit out of the syringe and then put the needle in and then just try to mimic that, like, one drop coming out thing. That was not fun.
Would have been better advice than cake.
Well, thank you. Yeah. Can you just give her cake? Well, no.
But stop. I guess for every meal just so she can get insulin.
Yeah. Every oh, that's a good point. Right? Every time she breastfeeds, then she gets cake.
Yeah. Yeah.
It's not not a well thought out plan.
No. And so we were she was definitely having, like, ketones as well. She actually went into DKA a second time not long after diagnosis, basically, because of not being able to give enough insulin.
Yeah. My gosh. How long did this all go on for? How long did she breastfeed, and and was this a struggle?
Dosing Drops & Breastfeeding to 13 Months 39:46
I breastfed her until 13 old, so for about another three months after diagnosis. That's when I did also all four of my kids, so that was kinda my goal. And but she did start eating a little bit more after that too. Like
With with the the choosing from, like, avocado and apple, and you kept giving it did you keep giving it to her hoping like, oh my gosh. Maybe she'll eat this and we can stop with the breastfeeding, or you really wanted to get to that thirteen months?
I felt like because breastfeeding is more than just like nourishment. It's also, like, a a comfort thing too. And I felt like with all these injections and all this stuff, like, I didn't wanna make, like, another change
Mhmm.
In that sense. Like, I kinda felt like that's, like, a bonding thing that is also a comfort thing. I really didn't wanna just be like, oh, because I can't dose for it, we're gonna drop this.
Yeah.
So I did want it to be more because it felt like that's just where our time had come to.
Are you working at that point or no? Are you a stay at home mom? Or how what's your
I was a stay at home mom. Yeah.
Was gonna say, I don't know how you would keep a job during all that.
No. Yeah.
Jeez. So then as she gets bigger, I guess the the insulin gets easier. But nine years ago, did she have a CGM, or are you just using a meter?
We did get a CGM, not at the hospital like I hear some people are fortunate to get. We got it right before moving, so I think it was actually the week of her first birthday, so about two months after diagnosis.
Okay. And, obviously helpful?
Yes. Oh my gosh. Yes.
Which is a does it did it make you immediately I I know when Arden put one on, as soon as I could see it, I thought, oh, how what was happening before? Like, it almost made you feel like don't think about that. Like, don't think about what might have been happening before.
I think I was finger pricking so much because I was so neurotic
Yeah.
That I and I don't think her numbers were ever really low. I have to be honest.
Because she just didn't have enough insulin to make that happen.
Yeah. Yeah. I don't even remember what her basal was. I do remember that we did leave the hospital with the two types of insulin, so I know she was on basal. I can't imagine it was much, though.
I remember a time when Arden's basal was one unit a day.
It probably was something like that. I would've
That gee. That that's freaking me out a little bit. Now it's one unit an hour.
Oh my gosh. She still has pretty low basal needs.
Nice. Do you think she has any, like, function left? Do you do you ever see, like did you see honeymoon or anything during that time, or would that even be a thing you'd know to look for?
I mean, I feel like I've from, like, being in your Facebook groups and listening to your podcast, I feel like I've seen people say they've had to completely go off insulin or they, you know, just needed long acting or just needed short acting based off of different scenarios. She's she's always she's been insulin dependent since that day. We've never had to back off Okay. Anything. Yeah.
So I don't I don't recall really a honeymoon phase.
What was I'm gonna speed up a little bit because I'm interested in, because you've seen it through all the different, like, iterations, right, and and age groups. So what were there times that felt harder, times that felt easier? Did you have to use day care? Did you have to like, what was it like sending her off to kindergarten? Can you walk me through the, you know, the timeline of her life?
Staying Home, Starting School & a Celiac Diagnosis 43:21
Yeah. So I actually we moved right after not long after. She was one. So I decided to continue to stay at home because of the move and her diagnosis. I was I I'd worked for New York City Board of Education as a school psychologist prior to my children and still had all my certifications and everything.
And when we moved between state lines, I never even, like, looked into how I needed to change over all my stuff. Okay. So I just have continued to stay at home because we couldn't really see a life otherwise either. Mhmm. When she was about to when she would have been old enough to go to pre k three, I did discuss it with her endocrine.
I said, do you think it would be more beneficial for her to start to get used to someone else caring for her other than me, or do you care if I keep her home? Because I really wanna keep her home another year. But I I really love our new doctor here in New Jersey, so I very much trust her opinion. And she said that she felt, you know, just doing pre k four and then kindergarten would be fine. We didn't need to push it for three.
Mhmm. And also at this point, had just been diagnosed with celiac at three. So I was also even a little more nervous to send her to school with now two things a nurse would kind of have to deal with. Right. So she did not go at three.
At four, it was pretty nerve wracking. It was September 2020, so they were going to school in masks. Oh, jeez. But luckily, the the primary school is very close to my house. Like, if if for any reason my car broke down, I could literally run there.
Okay. Okay.
So I and it was only two hours and twenty minutes a day, and there is a nurse in the building. So it was a a best case scenario for a very nervous mom like me.
Yeah. Hey. What are the, lead up symptoms to the celiac diagnosis? What did you notice first?
We were having severe difficulty potty training, and not for lack of her wanting to because she actually could not go. She was so constipated Mhmm. And could not it took her hours. And so you can't force a three year old to sit on a toilet for hours.
Yeah. Nor would you want to.
Oh, right. Yeah. So she just she could not potty train because she just it was a struggle. So that was one of the first symptoms I noticed, and it eventually got to I started backing off insulin. At first, I thought it was just a carb ratio change, and so we made her carb ratio weaker.
And I I kept like, I think I changed the insulin to carb sensitivity. We changed basal rates because at the time she was on dash. There wasn't automated back then. So I just kept changing things. At one point, I remember it was summer.
It was July. We were at the beach, and I just had to keep feeding her watermelon all day. And her pump had been, like, suspended. And I called the doctor the next day. I'm like, as much as I would love to say my kid is no longer type one, this is kinda weird.
She doesn't need insulin anymore. Yeah. And we had been watching. They told me they felt that it was not if, but when she becomes celiac because she did test positive for all the markers and everything Okay. At diagnosis.
So I was kinda like, I think we need to come in, but it had been all that COVID stuff, and they kind of were pushing me off. And then finally, when when that happened, when we were, like, no longer giving insulin for much and having these other issues, they said come into the hospital, and we'll do some blood work and all that. So
Living With Celiac (and a Paris Mishap) 47:21
How have you learned to manage celiac? Like, is it a is it how you cook, or is it what you buy? Like, what what you know, some people buy a lot of prepackaged stuff that's, you know, that's supportive, and some people will do their own cooking. What have you ended up doing?
We mostly cook at home. She she's a very great eater out of all four of my kids. She's the healthiest and easiest. So she does a lot of, like, just, like, kinda natural whole foods. Mhmm.
But she's still a kid, and she goes to school. I mean, she eats a sandwich every day just on gluten free bread. Sometimes she likes Lunchables, and I make them with the gluten free, like, Ritz looking crackers. And now there's so many cool products out there that makes her like, her friends were so excited when gluten free Cheez Its came out because now she can have Cheez Its like them. Oh, that's sweet.
Her friends are really, really awesome and supportive because they've only known her to have both type one and celiac. So whenever they have a party or she has a party or just to get together, like, everyone always brings, like, the gluten free Oreos now that they're so easy to find or the gluten free Chips Ahoy. So everyone's really great, and it's really easy. When we're at home, we actually she actually got cross contaminated. We were just on vacation, and she got pretty sick while away.
So that was unfortunate. But at home, we really manage pretty easily. It just takes the spontaneity out of your life. Yeah. Because if you don't have food on you, you kinda can't just go anywhere.
Right. Right. What what is what is getting sick look like?
She was vomiting all night.
Oh, gosh. And and it's just it's a thing you tell people and they just they get is it, like, cross contaminated, like somebody's not paying attention or they bring you something they shouldn't have? Do you have any idea even what happened?
We do. So we were in Paris, and we had these translation cards. And you kind of, at that point, have to know you're taking a risk and hope for the best. I had done some research. There's, like, celiac travel Facebook groups and stuff, and we had the names of some places.
But we were with a big group of family, and they all didn't wanna eat at a 100% gluten free restaurants every single time. And I had went to this one place that was near the Airbnb the night before and brought the card and asked them. And I was like, hey. Like, if we come in here tomorrow and they were like, yeah. Yeah.
We we're going for crepes, and buckwheat crepes are made with buckwheat, which even though it has the word wheat is actually gluten free. Mhmm. And so I talked to the guy and I was like, okay. Great. Thought I had done, like, my due diligence, and we went the next night.
But I guess even though the card had said, like, it needs to be used separate utensils and separate cooking materials, that's the only thing we can presume is that they must have used shared cooking preparation space or, you know, touched or something Mhmm. Because hers definitely did look different. You could tell we were there for six days. We had bunch of crepes in other places where she didn't get sick. The buckwheat crepes has, a darker flour, so you could tell the difference by looking at it.
I see. So we know she did have a gluten free one. So I think it was just
It was contaminated. Yeah. Yeah. My gosh. That sucks.
I'm sorry. I'm it really just it is a lot. Like, you have a really good attitude. Like, is it are you high? What's going on?
Are you on pills? Why are you so happy?
I I think there's days where you can beat down. I guess I'm I'm on a day where I'm not beat down because she is definitely thriving as a whole.
Yeah. And so she's got supportive friends. You figured out her eating. You figured out the diabetes is the next piece. So how long was she on MDI?
Pumps, a Move & Diluted Insulin 51:24
When did she start I mean, I assume she uses a pump now?
She does. We are on Omnipod five now, which is technically our third pump if you count Dash as a separate pump. She used a Medtronic at first. When we moved to New Jersey, that was the second time she went into DKA, was during our move. I could smell the ketones on her breath.
We were in we were in between the houses, like, had closed in New York, moved. We were staying in my sister in law's house overnight because we were gonna close on the house the next day. Mhmm. And I could smell her breath, and we had the Dexcom at that point so I could see her numbers. And I called the the on call New York doctor, and I was like, these are her ketones, and, you know, I'm so scared.
Like, she's her breath smells just like when we brought her into the hospital, and they were basically like, you're over state lines insurance. We can't help you. Like, if you're nervous, you have to go to a hospital.
You're over state lines?
Yeah. I guess because they couldn't bill it, and they couldn't give medical advice over phone, and because they couldn't see us, and they were kinda like, you have to go to somewhere in New Jersey.
Okay. And then what'd you do?
Well, I was just like, okay. I'm just gonna push more insulin overnight. We went and closed on the house, and then I went straight to the hospital from there. What
is wrong with everybody? And
she was in DKA. Oh
my gosh.
But it was the most like, not that I'm glad she went into DK, but it was kind of like one of those blessings in disguise because we couldn't get an appointment, you know, obviously, immediately. Usually, there's a wait list and stuff for doctors. This was Memorial Day weekend of May, obviously. I think we had an appointment for, like, the end of June, and the doctor we had an appointment with wound up being the oncoendocrinologist. So we got to see her right away upon moving, and she's, like I said, fabulous, and I very much value her opinion.
And so once we saw her in the hospital, I explained what was going on, why, basically, I felt we were in DKA again, and that's because I couldn't give insulin. And oh, and also the New York would not give us diluted insulin because that was something I had read about on Facebook groups and stuff, and they just would not support diluted insulin, the New York practice.
They wouldn't or they didn't know how to? Do you ever get a feeling for what that was about?
No. I don't remember why. I just know that was not we were not given that option despite me definitely knowing about it.
Yeah. And and you and you pressed a little bit, they're like, we don't do that.
Yeah. And then so she was like, okay. No. No. This is all wrong.
She's like, we are getting you on a pump right away. But for now and the hospital had a pharmacy like, the hospital pharmacy, and that was it. She got us on diluted insulin that second in the hospital and wrote up all new carb ratios and taught me how to change everything based off of using the diluted insulin. That way, essentially, you could then drop what looked like a unit, but it really wasn't a unit.
Because No. No. I know. Yeah. I I I I know what it is, and I just I actually just interviewed somebody who used it really successfully, you know, when their child was younger.
It's weird for them not to know it was an it was a pediatric endocrine office? Yes. Oh, okay. Alright. I don't know what to say.
That that that sucks because that would have really been helpful for you.
Yes.
Yeah. Yeah. You're like, yeah. I know. Thanks.
Yes. Oh
my gosh. Has anything gone right in the last ten years?
Absolutely. Of course.
Tell me about it a little bit.
I mean, just in terms of going right, yes. The her three siblings, they all have tested negative for all antibodies. We've done trial on that on all three of them. Her two older siblings have neither of the genes for celiac that they tested for, And her younger brother does have one out of the two, but he does not show symptoms yet. But he does get tested every other year Mhmm.
Unless we see symptoms. So so far, he does not have celiac.
Okay. Well, that's good news. Yeah. Seriously. How would you characterize the diabetes as far as impact on your life?
Celiac vs. Diabetes, School & Devices 55:54
Like, is celiac more of a day to day impact than diabetes? Vice versa, is it not fair to compare them to each other?
I feel like diabetes takes so much more thought in terms of, like, making the decisions. For example, we just it's her first year taking state testing, So it was, like, you know, planning for that. You don't necessarily want her to be too high or too low. I don't wanna disrupt the other kids that are taking the test with her alarms going off.
A lot of a lot more planning?
Yeah. Definitely a lot more planning and a lot more, like, trying to predict the future. Yeah. She dances on Fridays. She goes from four until 07:45 at night with no breaks.
So, like, you have like, we figured it out, but that takes a lot of planning that other kids don't have to think about.
Yeah. Is it impactful on her? Do you see does it drag her down?
I think sometimes. I know that last year was harder. She hated going to the nurse all the time. And this year, we she is treating Lowe's in the classroom, and her friends have actually taken up to they have a schedule. It's written in her folder because I guess they were, like, fighting over who got to walk her to the nurse.
They were
they were fighting over
who got to get out of class.
Yeah. Yeah. So the tea the teacher had to make up, like, a little schedule. So I don't think she's as down and out about it as much anymore because I get like, not that it's cool, but, like, it's it's not, like, a burden, I guess, because she's not, like, going to the nurse by herself and missing out on something. There was a year where she, like, was missing art because she had to leave for the pre bolus for lunch during art, and that was, like, her favorite.
And I I spoke to the school, and we worked it out. They're they're pretty flexible and accommodating when when within reason, of course. But they they've definitely been good partners in this.
Out outside of her friend group, is she okay with people seeing her devices and knowing, or does she is she more private? How does she handle?
She rocks them. Yeah. She doesn't mind they're usually on her arms, so they're pretty visible except for winter. But, you know, springtime, fall with short sleeves, they're almost always one on each arm.
Okay. There's nothing that she she feels self conscious about then?
No. She used to about her stomach because we actually so celiac is diagnosed on a Marsh score, and she was I think it's, like, Marsh score three c, like, is, like, basically one of the worst, like, where the villi is the most blunted. And because I I mentioned her symptom was constipation, we couldn't use her stomach. And when we did, it would get, like, infected because, I guess, the pressure of her stomach being so bloated and and full pushing on the cannula.
How about that?
So she has, like, some scarring and, like, it it was just always very painful on her stomach. So she's a little self conscious about her stomach. Mhmm. But it's gotten better now that that's all been resolved. But it took a a pretty long time for her GI tract to get back to normal.
Gotcha. Wow. Gosh. That's it it I does your husband help with any of this, or is he hiding somewhere? Or how do you manage the the day to day stuff?
Is it just
He it's fantastic if if I'm, like, gone for the weekend or or anything. He's really good at it, but I generally, because I stay at home, take the majority of the reins.
Yeah. I did. I mean, that's what we did too. I found that well, Kelly and I both found that you try to pass it back and forth all the time. You almost spend more time explaining it, the handoff, to the to the other person.
It just feels like you know what I mean? Like, it's you're like, well, this is what happened today, and so far, this will happen. You know, she was low here, and it feels like she might be more sensitive today and blah blah blah blah blah. And then by the you you try to give that over to somebody, and they're like, ah, I don't I can't it's it's I know that
He's a little more impatient with the highs. He'll he he's he likes to try and crush and catch more. Yeah. He's a little more bolder than I would be sometimes because he just, like, he's just, ah, and just, like, rage boluses.
Does it work for him?
I mean, usually. Yeah.
Then what what what makes you nervous about it, though?
I don't know. I mean, I I think I think I'm more, like, trial and error person. I'll be like, okay. Let's try one unit. Oh, that wasn't enough.
Next time, I'll try one and a half. And he'll just be like, whatever. Two units. Like, he just, like, picks a random number, and it was just like, she could just drink juice if it's wrong.
Oh, look at him after my own heart. Yeah. Yeah. No. I I spent some time the other day looking at a blood sugar, and I was like, this is not gonna do it.
Like, you know, like, these little numbers are just never gonna move this. We're gonna do this all day if we if we keep hitting it, like, lightly like this. I yeah. Well, listen. Does he doesn't listen to the podcast, so that's something he came up with it on his own.
He does not. I did make him listen. Which episode was it? Oh, the one with Katie Beth. Oh.
Was like, you have to listen to this.
Oh, oh, yeah. She was
interested making to that one.
But he yeah. Did what was what's the takeaway for you when you listened to her? I know it's the pivot. Anyway, Katie Bethanne, she is one of the people that went through the Chicago, Isla transplant blah blah blah. She's not using insulin anymore.
What what what did you think when you listened to it?
A Cure in Her Lifetime? 1:01:25
I think this is the first time I've heard something that sounds like there's a potential for a a cure in her lifetime. Like, I'm not thinking five years or even ten, but she's still so young. I think that this has the potential to, at some point, change her life. So I, like, literally I'm actually even already tearing up just saying that. Like, I it's the first time I felt like this there's an end in sight.
It felt hopeful Yeah. Unlike other stuff that you've heard about.
Right. They they've had, like, potential, but not the same kind of potential where it's like, okay. Cool. That's a that's a nice little step up on the ladder. But this feels like it's a huge leap.
And and yeah. So you're that excited by it, but you're still able to be realistic about it because it's not I mean, they did handpick those 12 people. So you you know what I mean? Like, it's not exactly like it's not like anybody could have just walked up and had it happen. They they they picked very specific people who whose health was in a very specific situation, and they're gonna I mean, his plan is to continue to expand it.
The doctor, you know did you ever listen to the doctor when he came on?
I did. Yes.
Okay. Good. Good. Good. Well, that's really I'm I'm and what was your husband's takeaway then?
He was pretty hopeful too. I I don't know that he, like, was as hopeful as me, but, I mean, he thought it sounded cool.
Yeah. No. No. I'd since I I was wondering because it sounds like his he's got, like, a slightly different vibe than yours. I was wondering what his takeaway was.
Yeah. I I I listen. I agree. I think it's I think it's super interesting and really hopeful and definitely something that that I I hope continues on. But I don't know, like, you know, what the outcome will be as far as time goes even if they perfected it to, you know, where it was just like, hey.
Anybody who has type one diabetes? Come on over. You know, don't I wonder how long that would take. If if Yeah.
I mean, the fights with insurance sometimes are ridiculous now. So I can't I can't imagine what it's going to take for it to just get to where it's something that anybody on insurance can do.
Yeah.
That's why I feel more, like, in her lifetime maybe, in, like, fifty years.
Yeah. No. I hear you. I think it's that's more than reasonable. Episode seventeen eighty seven is called Cured Patient nine Speaks if anybody's interested in hearing Katie Beth on the show.
And I hope I hope I can have her back at some point to see how it's going for in a year or so.
I she 's doing great in terms of media. I I don't wanna say promoting because it's not, like, something she's promoting in terms of getting money for or anything, but just getting the awareness out there.
Yeah. No. No. No. No.
She's she's hustling. She really is.
Yeah. It's super it's She wants the world to know.
Yeah. Yeah. It's awesome. Really is cool. Alright.
Is there anything that we haven't talked about that we should have? I know this was a little weird because an hour and five minutes ago, you didn't think you were doing this. So were you did you stop being nervous, I guess, is also a question?
I think so. Do I sound like it?
I thought you were fine. Yeah. I didn't I didn't notice you being nervous. I thought you were a really good storyteller. I like I like how when you jump on, you're like, I'm not gonna know stuff like details.
Well, I feel like sometimes, like, you've asked, like, what was the a one c at diagnosis or the CPAP? Like, some people know those, like, numbers. I definitely I think I was in such a fog.
Oh, please. I don't know any of that. I listen. Pressure me right now on what day Arden was diagnosed? I have no idea.
It was in August. It's the best I can tell you. So I don't know that kind of stuff either. I just asked the question. Sometimes people know the answers and sometimes people don't.
You know? But it's it's a it's very nice of you to jump on. I do wanna know, management wise, how involved are you still in, you know, counting carbs, coming up with bolusing strategies, that kind of stuff?
I I pretty much do all of it. She doesn't eat school lunch, because celiac. So she eats breakfast at home. She kind of has mostly the same breakfast every day. Like I said, she's easy in that sense.
Like, my other kids are definitely not like that, so I definitely understand when people post like, oh, my kid would never. I get it. But she'll eat, like, eggs and fruit every morning. And she'll and if it's a fruit that's a higher glycemic, like an apple or banana, she will I'll be like peanut butter. She's like, yeah.
So, like, it helps, and she'll eat the eggs first, which, again, promoting one of your your podcast episodes, Glucose Goddess, about order of food eating. Like, she will listen to me and follow that. She'll drink water when waking up most of the time, which is also another one of her tips. So she does what she needs to do because she doesn't really know any other way either because I've been kind of prompting it since she's you know, before she could even talk or walk. I've been like, water first, eggs first, then fruit.
Like, that's just kind of the way she's always eaten. Lunch, I pack it at home. She picks what she wants, but we pack it. She actually really likes using the scale and and writing down the carbs on the post it note herself, and then she brings the post it note with her to the nurse. I think that
it gives her a feeling of being, like, not in control, but, like, you know, gives her agency in the whole thing, like, choosing the order she eats and weighing the foods. Or do you think it really is just that she's so I don't I don't wanna use the word like, but but but it's so ingrained in her that she doesn't have a choice? Or do you think it's like a you know, I'm I'm not sure if I'm being
Yeah. I think it's just kind of her normal routine, but she seems to be at an age where she wants a little more independence. She might pull back. I know there's, like, a lot of kids that don't like managing their diabetes, and I get it. I would be happy to do this for her as long as possible so that she doesn't have that burden.
Independence & the School Rulebook 1:07:21
But for right now, she seemed she she wants to even give herself insulin at school. Mhmm. That's kind of another slightly longer story about independence versus not independence and a roadblock we ran into this year.
With what the school would let you do?
Yeah. So I don't know how long ago if the forms were exactly the same because Arden's, like, twenty one ish. Right? Yeah. So I guess the doctor like, the doctor's forms or orders that that we put in with the school, it's either it's kinda black and white.
It's either independent or dependent. And I had asked and spoken with her endocrine, and I said, hey. Could she be like, when they list what you need to be to be independent, it's like carb count yourself and all these different things. I said, she can do all these except the carb counting. Like, I wouldn't ever want her looking at a class party snack brought in and carb counting it herself.
I don't feel comfortable with that. I was like, but can she give herself insulin? Like, if I'm writing it on a post it note every day and it's saying her, you know, her lunch is 40 carbs, can she input that into the pump herself and and give herself insulin?
Yeah.
Last year, she had a one to one para. And I said you know, and her para, oversee it. Just see it. Like, visually have an adult have eyes on it because the para was not allowed to give insulin. In New Jersey, only a nurse a school nurse can give insulin, so her teacher can't.
And she only can if she's deemed independent. So the para is like, can she just have eyes before she hits the start button and confirm, like, yes, 40 matches the post it note. That's good. We don't have to go down to the nurse. She really wanted to be able to do that.
The doctor felt comfortable writing off on that, and I was like, can we handwrite this in? And the school was like, no. And we kind of they we went back and forth, and they printed me out some stuff from their bylaws or whatever their lawyer is. And they were like, no.
Bylaws. Dummies with their dumb rules.
Yeah. Yeah. I mean, I'm her parent, and her doctor is willing to write this. So I just I'm funny that some superintendent or whoever it was was like, no. Our lawyer says, no.
That's never met my kid. But like I said, that's a longer
It sounds like a lawyer saw that and said no to it.
Yeah. Exactly. But that's never met us. So, yeah, she would like to do it herself. She really wants to be in the classroom doing a lot of this herself, and that is how we do it when she's at other things.
She goes to religion. And last year when they were practicing for communion and doing, you know, checks as the host, like, she gave herself insulin for for her checks. And, you know, she'll just text me or I'll text her, and we do that if she's, you know, at a friend's house or
whatever. Fine everywhere. Right?
It works fine everywhere, but the school won't allow it.
The school won't let you do it. Is there a world where you can just do it? Or or, like I mean, I guess they would know if she didn't come down and, like, do all
this stuff. Yeah. Did try did
you try the argument about her missing all the class time?
I did. I did. That's when we kinda changed things up. That was, like, part of that art story where she was missing art and being sad and I didn't care. Changed things up.
They cared more about what the lawyer said or more about her learning is what I was wondering.
They care more about what the lawyer said.
Yeah. I think so too. My gosh. Well, Aileen, I really appreciate you doing this with me. You really saved me today.
Thank you. First of
was No problem.
Was all amped up to record, and then this person, like, dropped out the last minute. Was like, oh, come on. And and then and then I thought, oh, I'll just I sometimes have a I don't really know how to explain this. I guess somebody would call it, like, impostor syndrome or something like that. Like, I made a post to put up to say, like, hey.
You know, could somebody jump on and record with me? And I really do mean it that way. Like, I I I I honestly, that's how it occurs to me. Like, oh, I hope somebody would be willing to do it. And now I'm looking I just looked up because, you know, I mean, the post is a 127 comments.
And I'm still just wants to talk with you.
Sharing the Show & Keeping It Going 1:11:30
Well, but I'm on but you have no idea what it's like to be in my head. In my head, I'm like, this whole thing's almost over. Like, I my wife is so sick of me saying that. I was like she's like, what are talking about? I'm like, I mean, how long can a podcast about diabetes last?
And she goes, well, it's been twelve years so far. And and she's like, it feels like it'll last as long as you want it to last. And I was like, well, I want it to last a a much longer time. She goes, well, then stop talking about it. I'm like, but it's hard not to feel that.
Like like, I'm stunned that anybody answered me. I know that might sound ridiculous, like, to you, but, like, to me, it it doesn't. Like, I I looked at it, I was like, nobody's gonna answer this. And, you know, it's just really lovely. So now I'm basically setting up the rest of the the year with with the recordings when I get off with you.
I don't think I would have had the the like, to be brave enough to just set up on my own and be like, oh, I'm I'm I have enough to say and, like, let me just email him. I'm not.
You needed the Thelma and Lee's
Lee's were were off the
cliff thing.
Impulse. I was like, okay.
Well, that's that's actually what I was hoping is to grab somebody who because you were terrific, by the way.
Oh, thank you.
Yeah. Yeah. You're absolutely fantastic. And and I'm I'm glad that you did that. I yeah.
I don't know what it is exactly. I just did something I don't think I'm supposed to say, but I just did something with Omnipod. Like, I filmed something with them. And Mentioned
it, but continue.
And and I I I can't be detailed about it. And and, I mean, you'll see it eventually. And and when it got done, I walked away and I thought, oh, I I why? Fuck that up. Like, like, it's exactly how I felt when I turned and walked away.
Was like, that's gonna be an abject disaster. They'll probably cut this from the thing. Like, I they're like, oh my god. They're being so garagatory when I'm walking up. Look at them trying to be polite to me.
They probably think, oh, does he have a head injury? You you know, as as I was walking away. And I really felt that way. Like, I was like, I definitely did not do a good job. And I'll I'm gonna and then I I stopped myself.
I was like, oh my god. This is what everyone does when they come on the podcast. Do you have any idea how many people I stop recording with? And they go, listen. If you don't wanna use that, it's fine.
I'm like then I'm like, no. No. No. I'm like, no. What are you talking about?
And they're like, I mean, that that was terrible. And I'm like, I wonder what's wrong with me is what I thought because I because I got a message from my I don't wanna use people's names, but I got a message from my person, she she's like, oh my god. Your part went so great. Like, like, here's some, like you know, like, we're so excited. And I'm like, oh, okay.
Because I spent the last week thinking, like, oh, I I actually texted her and I said, listen. When you let me down, use kind language. And she was she was like, what are you talking about? I'm like, why? I obviously messed that thing up.
And she goes, we we didn't think that. And I was like, oh, well, in the moment, it was exciting. I was like, but when you stop and look at it, you're gonna realize what and she
You're very charismatic. I'm sure you probably, like, black out and just, like, go about your normal personality, and it's, like, great.
Well well, thank you. And that's kind. But, like so I was at the I was at the dentist office yesterday chatting it up with the the ladies at the front as I do. We a have nice relationship because I'm a person with a number of different crowns, so it's not like I don't know the people at the dentist office. And we were they asked about the trip, and I was explaining that.
I really felt like I messed the whole thing up, you know, etcetera. And and she's like, no. I saw a thing you did online recently, and she was referencing the the three tips for the Omnipod five, like, make the Omnipod five, like, adjustable. And and she's like, that video you did, it popped up on my feed. She's like she's like, you were great in that.
She's like, it's it's very natural. And I'm like and I said, no. No. No. And she pulls it up to stick it in my face.
And as soon as she showed it to me, I went, look at my neck. That's what I said. She's like, what is wrong with you? I'm like, I don't know. My neck looks ridiculous on this.
And she's like, no. Stop it. So
Well, I'm glad you told me I could turn the video off.
Oh my god. Oh, no. Yeah. You would have killed me. If we turned the video on for this, I would have just been, like, the whole time I would have been thinking, I look ridiculous.
But I don't know. I I really, like I sat and thought about it for a while and because we were talking I've really known these women for a really long time. We're friendly. And and she goes, what do you think's wrong? And I said, my best guess is, like, I was fat when I growing up, and I really think I have a hard time seeing myself correctly.
Like, I really do think that's what it's about. Because when they sent me the photo from the thing that I did, I looked at it and I thought, oh, I I I don't look right. And then I I I showed it to my wife, and I was like, hey. Do I look bad in this? And she goes, how so?
Like, she wasn't even tracking what I was asking her. And so I stopped because I don't wanna seem needy because we've been married for thirty years, and I assume she's looking for any reason to get rid of me. And so, like so she was just I I said, okay. I'm like, I don't look like it's but she's like, no. You look fine.
And I went, oh, okay. Great. And and but I don't know. Like, it's just it's whatever it is, it stuck to me. And I'm 54.
I don't think I'm shaking it at this point, but we'll see. Anyway, I didn't think anybody was gonna say yes when I put it on Facebook. I actually have a plan for, like, if I should delete it so I'm not embarrassed after I put it up.
No. I think you have, like, so many episodes. That's also what, like, makes me come back. Like, it depends on my mood. Like, do I feel like I need to, like, change a setting or or retouch up with something?
Usually, I feel pretty confident in that stuff. However, as technology changes, when obviously, when we got the Omnipod five, of course, I was listening to those episodes. Whenever you have, like, that's come on that talks about, you know, their their upcoming stuff or I always listen to that stuff for sure. And then, like, it's just like, oh, do I wanna just listen to someone talking? Do I wanna, like, listen to I always, again, listen to Jenny too because I feel like those are the types of things that I need, like, the information on.
Yeah. But, like, even my son, he's always like, why are we always listening to this?
Oh, tell that kid I said go to hell. I mean, what are we doing right now? I did you tell my bills and kids that have to go to well, one went to college, but I still paying for the other one. I can't tell them to shut up. Alright?
And and subscribe and follow. I you know, it's funny. I've been listening to I've been list they call it a podcast, but it's on YouTube. So I don't know if I'm just old. But if you're videoing yourself, I don't think that's a podcast.
I think that's a YouTube video. I know this is just some antics.
I agree. But
yeah. But so I've been watching these these these interviews this this guy is doing, and he's starting to grow on me a little bit. And I've seen, you know, ten, twenty of them. And in the beginning of everything, he does, an impassioned, like, hey. Listen.
Please subscribe to this. You have no idea how much. And when he does, I go, ugh. Sounds so thirsty. And I know that's a word I shouldn't be using at my age, but he literally sounds he sounds it sounds pathetic to me.
And but I know exactly how he feels because it is the lifeblood of, like, making content and putting it up. Like, if you guys don't subscribe, I'm dead. You you you know what I mean? Like, it'll this will you wait. Do you see how fast this goes away if people don't subscribe, follow, download, listen, like, do those things, share, etcetera?
It it dies really quickly. But when I heard someone else do it, I was like, dirty. And then when I do it, I'm like, no. You don't understand. It's fucking important.
Yeah. I post a lot about, like, for awareness and stuff. I I just tend to be a person that enjoys sharing stuff. But so as a result, though, I get a lot of people sent my way asking, like, hey. I know someone that has type one.
Can I send them your information? I feel like anybody that's been diagnosed within the last nine years, like, within the vicinity of me. Even Ainsley's doctor is like, can I can I send someone your number? Oh, wow. My daughter my oldest daughter, her kindergarten teacher, she pulled me aside one day and goes, so I know someone that was diagnosed.
Can I give them your information? And I just I always I always I love that also in the albums and your Facebook group. It's so easy to find the episode guides. I'm always like, here. Start here.
Yeah. Thank
you. Start there and then if you have questions.
Isabelle fixed Facebook group so that it's easier, and I've just done some stuff with the website. Actually, I put up a a page. It's at juiceboxpodcast.com, and then it's slash clinician-share. And it's literally a website that's just to make it easier for doctors to share printouts and handouts and and links.
Oh, that's that's great.
Yeah. So I'm I'm I made it, and it's funny because after I made it, I thought I maybe I should have just called it share instead of clinician share because as I look at it, I realized that there are more people like you that are sharing the podcast than I'm aware of, and I would like to make it easier for you guys as well. I don't know. I have a very short amount of time to make a decision, but I think I'm gonna keep this one this way. But I think I'm gonna use the format of the page and try to figure out something to put right on the front page of juiceboxpodcast.com so that people can share right from that.
Yeah. Everyone's different learners. I know for me, the Facebook groups were so overwhelming in the beginning Mhmm. Because of the amount of questions and then the amount that you're like, wait. Do I need to know about this?
Why what is this? And just like and then you post a question and then sometimes you have the people that are like, use the sarch fountain.
Well, those people can shut up. They don't realize how they don't realize how important it is for there to be constant conversation.
Again Well, because you can't filter through thousands of things and find it.
Well, not just that, but if you don't if if if a Facebook group is not active, then it dies. Then there's no reason to go to it. Then it doesn't matter what kind of good information's in it because nobody will ever be in it again. The pressure to keep people connected to things when you make stuff like this is probably the worst part of my life. Like, it real it it really is.
It's in it it must be what a a small business owner feels like when they open up an ice cream shop and then everybody in town's tried the ice cream. And they're like, okay. Bye. You have to come back now. Like, you know
what And they all have an opinion too.
Yeah. It it's just it's very it's a it's a difficult thing to keep. Like like, I swear to you, it's not a thing that, I guess, would be easily understood by somebody who's not in my position, but my greatest accomplishment is keeping the podcast going. That it is that is not easy to do. So
I mean, moderating that group has got to be the most difficult one.
That I don't have too much trouble with that anyway. I I've I've let go
I usually just scroll past, but I, like, I laugh at something. I'm like, oh, that's about to be shut down. And I'm not gonna comment that's about to be shut down because I don't wanna be in the drama. Right. But I just see it and I'm like, oh, that's funny.
Yeah. No. And then and then people, like, you know, fascinatingly will, like, judge you for it somewhere or something like, oh, he'll he so I heard saw somebody say recently, like, he bans everybody. And I was like, we've barely banned anybody. Like, there's 84,000 members, I think, as of today.
And the amount the amount of people that have been banned out of that group in years and years and years is a it's a very small number. Like, you know,
I'm like banned accidentally.
Did you you got banned accidentally? How did that
Yes. Yusabel helped get me back in.
Did I really? Oh, I'm glad I did. That's nice.
I I messaged, Yusabel and I was like, I don't think I did anything. And if I did, can you please tell me what rule I broke? I don't understand.
Well well, I the I'm glad you were nice about it because we're just doing our best. And you're trying to like, sometimes people are pushing businesses, and it's just the thing we don't let happen. Like, even if I just today, somebody said, hey. Does can anybody tell me about any good virtual, you know, support systems? Like, they're just asking for, like like, the place Jenny works or something like that.
And this person jumps in and goes, I am blah blah blah, and I have this, and this is my link. And I'm I had to remove it. I'm like, you can't you can't promote yourself. Like, if somebody else thinks you're a great thing, that's awesome. But you can't do it because then the group turns into a billboard, and then that's another way it dies.
Like, you can't we can't just turn it into the yellow pages. And and then some people understand, and then some people get mad, and then they send angry notes, and you're just like, okay. But to your point, it's not easy to run a Facebook group. But it is really valuable, and I find it actually, I find it uplifting to to see all those people in there. But anyway alright.
I'm gonna let you go. You were very kind to do this. Thank you so very much. I really appreciate it. If you hold on one second, I just have to tell you a couple of things.
Sure.
This episode of the JuiceBox 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.
Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. Alright, kids. We're done. We're at the end.
Just do me one last favor if you can. If you could, please. If you have the need or the desire for something that one of the sponsors is providing, please use my links or my offer codes. They help the show so much, and that means me. You're helping me to make this podcast every day.
You're helping me to support the private Facebook group. Do all the things that I'm doing. I'm not asking you to buy something you don't want or something you don't need. But if you're gonna get one of these items, use my links or my offer codes. They help me a ton.
Thank you so much for listening and for supporting. I really do genuinely appreciate it. I'll be back very soon with another episode.
- Diabetes can hide behind a “stomach bug.” A vomiting, restless, unsettled baby turned out to be type 1 in DKA — and a packed ER didn’t catch it until someone finally checked her blood sugar. When something feels off, trusting your gut and asking for a glucose check matters.
- Dosing a baby is its own problem. With a 1-unit-per-60-carb ratio and a breastfed child eating almost nothing, the real answers were diluted insulin and learning to dose tiny fractions — not “feed cake to reach the carb count.” Diluted insulin is worth asking your pediatric endo about.
- Thyroid symptoms deserve attention, especially with a family or autoimmune history. Aileen pushed on her older daughter’s TSH despite a reluctant doctor; symptoms plus a TSH creeping up is worth a real conversation. Advocate, and ask for a provider willing to look closer — decisions belong with your care team.
- Type 1 and celiac often travel together. Celiac added cross-contamination risk (a Paris crepe), self-consciousness, and even infusion-site complications from a bloated belly. Whole-food cooking and supportive friends made it livable — it mostly costs you spontaneity.
- If a provider’s care doesn’t fit, keep looking. Aileen cycled through residents who didn’t understand nursing, a CDE who suggested cake, and an over-state-lines phone refusal before landing a pediatric endocrinologist she trusts. A good fit changes everything, and you’re allowed to call around.
- US Med — Diabetes supplies delivered — this episode’s sponsor. Or call (888) 721-1514.
- Tandem Mobi — Tandem’s impressively small pump with Control-IQ+ technology — an episode sponsor.
- Touched by Type 1 — Scott’s favorite diabetes nonprofit and an episode sponsor.
- #1787 — Cured Patient 9 Speaks — Katie Beth on the islet-cell transplant trial — the conversation Aileen found genuinely hopeful.
- Clinician Share Page — Scott’s shareable hub of printouts and links for doctors — and for sharers like Aileen.
- Diabetes Pro Tip Series — The settings-and-timing fundamentals with Jenny Smith — episodes 1000–1025.
#1887 - Take Your Hands Off It: The Feelings
Part two: therapist Erika Forsyth on the mental side of diabetes — trusting your settings, hypervigilance, the pre-bolus wait, grief, and the self-compassion shown to lower stress and A1C.
Take Your Hands Off It: The Feelings
Cold Open & Sponsors 0:00
Here we are back together again, friends, for another episode of the Juice Box podcast. Excellent. Erica, this is either, depending on how this works out, either the second part of a two part episode where Jenny and I were the first part or 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. I know that Facebook has a bad reputation, but please give the private Facebook group for the Juice Box podcast.
It gets a 150 new members a day. It is completely free, and at the very least, you can watch other people talk about diabetes. And everybody is welcome. Type one, type two, gestational, loved ones, everyone is welcome. Go up into the featured tab of the private Facebook group, and there you'll see lists upon lists of all of the management series that are available to you for free in the Juice Box podcast.
The episode you're listening to is sponsored by US Med. Usmed.com/juicebox or call (888) 721-1514. You can get your diabetes testing supplies the same way we do from US Med. Excellent. Erica, this is either, depending on how this works out, either the second part of a two part episode where Jenny and I were the first part, or it's gonna be an interstitial where I the listeners are hearing Jenny and then hearing you and back and forth.
We'll see how it goes. But how are you? Good. Good.
I'm I'm well, and I I like the, use of the inters inter
Interstitial? Interstitial. I think that's a tell is that about a television or a movie term, Isn't it?
I I immediately thought of the interstitial fluid.
Oh, interstitial fluid.
Interstitial fluid. No.
I was like, I think interstitial in movie making means am I wrong? Has
this how
we're starting? This is ridiculous. This is even when you ask, like, a like, if you should I admit to this? I sometimes feed my transcripts and ask it what good questions I asked and what bad questions I asked, and how many of my questions led to good answers and, like, that kind of
thing. Uh-huh.
And it says that sometimes I go on tangents too long, and I argued with it. I was like, I don't think I do.
So Well, yeah, you said you said inters did you say interstitial?
I thought I said interstitials because I think that's
Interstitial. And I thought of interstitial fluid, which is what we talk about in, you know, diabetes world.
Here it is. In movie making, interstitial usually means a short piece of material placed between larger sections of film showing episodic or programs, think connective tissue. I think I was pretty close to being right.
You are. You are.
I explained to my children recently, and they're like, you don't know what all the words mean that you use. And I was like, I know enough of what they mean. Thank you.
So No. I I yeah. I wasn't questioning the use of the word. I just asked I thought of
Oh, I
the other word. Immediately spiritual.
Immediately as you spoke, I thought I was probably wrong. So, anyway
Sorry. Don't
From Settings to Feelings 3:46
get me sorry at all. This is awesome. So, Jenny and I spent about an hour, you know, going through ways to reduce the practical load of diabetes. Right? And Jenny kinda hit on some things over and over again, better settings, better timing, less interaction, like less fiddling with things, less chasing.
But the reason I want to talk to you about it in the in the same conversation, different light, is because it occurred to me that somebody has something that's in their way, a speed bump or something. Even if a person like Jenny comes in and says, hey. This might be the fix to that problem. I noticed when I'm talking to people, there's always a, yeah, but. Yeah.
But Mhmm. You know what I mean? I'd you know, if you say to somebody, hey. Set some alarms, for example, on your CGM. And if it's not alarming, don't look at it.
They go, well, that sounds nice. But and I thought we would maybe walk through the things that Jenny had spoken about and see if we can find ways to make them feel more comfortable on the the psychological side of it. Sounds good?
Yes. Okay. I like it.
So first thing Jenny said was how do we remove, you know, the overwhelm? And it would be a lot about getting your settings right. So she talked about people in the diabetes community touching things constantly because they don't trust what they're seeing. But what I'm gonna ask you is that when we finally get their settings in a good place, why is it that some people might find it hard to step back, and how can we help them do that? Diabetes comes with a lot of things to remember.
So it's nice when someone takes something off of your plate. US Med has done that for us. When it's time for Arden's supplies to be refreshed, we get an email. Rolls up and in your inbox says, hi, Arden. This is your friendly reorder email from US Med.
You open up the email. It's a big button that says click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one. US Med has done that for us. An email arrives, we click on a link, and the next thing you know, your products are at the front door.
That simple. Usmed.com/juicebox or call (888) 721-1514. I never have to wonder if Arden has enough supplies. I click on one link. I open up a box.
I put the stuff in the drawer, and we're done. US Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMs like the Libre three and the Dexcom g seven. They accept Medicare nationwide, over 800 private insurers, and all you have to do to get started is call (888) 721-1514 or go to my link, usmed.com/juicebox. Using that number or my link helps to support the production of the Juice Box podcast.
Why It’s Hard to Trust the Settings 6:44
Yes. So and what what we're talking about is, guess, trusting. Right? Trusting the settings. Why does it feel challenging to trust the settings initially?
Or I mean, I think there's there's a time issue. Right? Like, it it takes time to build the trust that the basals of correction factors, etcetera, are actually going to
Work out.
Repeatedly work out, like, over, you know, mass experience to reset that fear
Mhmm.
That it's not.
Do you think the fear comes from initial miss like, guess it could come asking you is the wrong way. I guess it could come from it being wrong and them having outcomes that aren't desired, or it could just come from being new at something and just being afraid of it because it's new and they don't understand it. So the question is is that once those things get hammered out, whether it's Mhmm. Time in the simulator or better, more repeatable outcomes, a lot of people still find it difficult to just go, okay. Good.
And trust it and walk away. I I guess what I'm asking from you is how do you think they could maybe accomplish that?
So in improving trust, I think, connects to reducing the fear. And that that there's a lot of ways to do that. I think stepping back and noticing, okay. Why they really kind of go hand in hand. Right?
Like, every moment, every meal, every day that you feel like, wow. Okay. I I bolus. I it did what I wanted it to do. That worked out great.
But we also know that if it worked out, the settings were great and worked out well one day, it might not work out the same way the next day. So I think it's in those moments, how do you trust that the settings are still accurate enough?
Okay.
And I think there's there's a space of trying to stay really present. There there's a moment where you can work on one can work on being present as opposed to which is also really hard to do
I was gonna
say the nature of diabetes.
Yeah. But what does that look like?
So so in the moment, you're saying, okay. Wow. I thought the settings I thought I had the settings, and I'm working on building trust in in in not touching diabetes as you and Jenny kind of talked about it. Right? I'm not trying to overcorrect.
I don't wanna you know, I'm gonna try and trust the algorithm. I'm gonna trust what my my settings are even though today, it didn't work out as well as it did yesterday. And I think in that space, choosing to practice some there's there's so many layers and so many steps. So practicing patience with yourself, practicing patience and and also self compassion, which I imagine we'll get into later, that it's not about the you. It's not about the settings.
It's about, wow. Today didn't work out the same way, but I do know that yesterday and the day before, the settings worked. So it's staying staying present minded. I mean, there's there's even a concept sorry. Go ahead.
No. Because you have to believe it. So it's my finding from doing it for so long that, yes, there can be other variables, right, that might that might blow this off course. But for the most part, it goes this way. It goes the way you know, when the settings are good, when your basil's right, when your carb ratio is good, when you're timing your meals well, you know, when you're doing all that, there's not as much that's pushing you off course.
So the thing I said to Jenny when we were interviewing was I kind of sometimes imagine like a tennis ball just pushed into space and that it's just going to go, like, I don't know if everybody understands that. But if you move something through space, if nothing else touches it, it's just gonna continue on an exact straight line. Right? But eventually, something dust particles, a meteor, whatever, is gonna bump something and it's gonna move you around. And with diabetes, there are already enough things, like, in your life, in your day bumping around things, changing your blood sugars.
But I was saying to Jenny was is, like, if you can at all help it, you shouldn't be also one of those things by touching knobs and doing stuff that, you know, isn't kinda valuable. So once it's moving along and it's moving super smoothly, it's not reasonable to think, like you just said, that it's gonna do that forever. Maybe it'll do it for a day or two or a week, but eventually something's gonna happen again. But that doesn't mean that the plan is bad. Do you know what I'm saying?
Like, it doesn't mean the plan's bad. So how do you stay calm, centered, keep yourself from becoming another one of those variables batting at that tennis ball? Stop yourself from becoming your own worst enemy in that situation, I guess. That makes sense?
Psychological Flexibility & Noticing the Feeling 12:02
Yes. Okay. There there's a concept that we have talked about here and there over the various episodes called psychological flexibility, and it's from an acceptance and commitment therapy model. And we talked about thought diffusion when we feel like the thought is so strong that it's attached to us, and I'm putting my hand over my face. Like, the thought is fused to our bodies.
And when we're when we're practicing psychological flexibility, which is very much connected to practicing resilience, is noticing you're staying in the present. You're noticing, wow. My my blood sugar went higher or lower than I anticipated even though I thought my settings were spot on or accurate. And so you're you're noticing, okay. What is the feeling that's coming up here?
Am I feeling shame? Am I feeling fear? Am I feeling discouraged? Am I feeling like, ugh. I don't even wanna look at this anymore, you know, avoidance.
Are you note are you feeling exhaustion because you've worked so hard to get the settings right and then you had this blip? So you're noticing those emotions. We're not saying, like, ignore them. We're not saying dismiss them. No.
We're not saying push through, but you're noticing, okay. I'm I'm feeling frustrated. I'm feeling shame. And I'm also not telling myself I shouldn't be feeling this way because my settings are good. Right?
We're just you're like you're noticing them, and then you're you're then having because you're taking that pause, you're separating yourself from the feeling. You're then able to make a choice based on from the psychological flexibility emphasis, like, what is your value as opposed to fear, exhaustion, stress, burnout, shame.
Is your So yeah. Explain the value idea to me. So is it Okay. Your value is I'm gonna I'm I'm gonna choose to to focus on the the worry aspect, or or I'm I'm gonna gonna choose to focus on the, hey. Most of the time, this goes well.
There's probably nothing to change here, just an anomaly. Is that the idea?
Sort of. So within within ACT, it's focused on your values, which is your why. Like, what why are you showing up? Why are you even working on your your settings? Why are you motivated to keep going?
You know, is it is it family? Is it your health? Is it your job? Is it freedom? So it's your kind of bigger picture, and that might change, but kind of your your overarching value in life.
So saying, okay. My my if your value is to show up for for your family in a way, like, as best you can, in a in a good enough kind of way. So you're you're noticing, okay. Gosh. My set my sugar my butcher isn't where I wanted it to be.
I thought I had my settings right. I'm feeling so discouraged, or I'm feeling so disappointed or so frustrated. Okay. I'm gonna I'm noticing I'm having that thought, which also separates you from the thought that it's true. I'm noticing these thoughts.
I'm gonna pause. I mean, we're getting into the weeds here of steps going back to you resetting your nervous system. We'll get into that as well, I imagine. And then say, okay. I know I do know that it worked Monday, Tuesday, Wednesday for lunch.
Today, I'm not sure why or I do know why, but I'm not gonna react from the feeling. I'm just gonna notice the feeling. I'm I'm just gonna continue on because I wanna continue to show up for my family in a healthy way. So you're separating yourself from the the judgment
and the feeling in the thoughts. That helps you sort of just let go of it. And and instead of putting putting it on yourself, you put the recognizing it releases yourself from it, releases yourself. Is that is that about it?
It kind of it redo yeah. It reduces Yeah. Reduces the intensity of that emotion that you're experiencing in that moment. So you're you're noticing it, but you're not using it as an informed decision maker to say, I'm such a terrible person. I can't believe I messed up here, and now I'm I'm gonna go in and change everything.
Mhmm. Or throwing hands up in the air. I'm never gonna get it. No. These are all things we may feel at various stages in our relationship with diabetes.
Right.
But if we're speaking from the perspective that you feel like your settings have been proven to be as accurate as they can be. In those moments, practicing the skill of noticing the thought or or acknowledging the feeling without shame or judgment and then saying, okay. But what what am I really doing? What's the bigger picture? And moving from there.
Okay.
That kind of reduces some of that emotional load in that moment from this lens.
Mhmm. Okay. Alright. Now I listen. There's a I want everybody to know who's listening that I just I threw these two things at Jenny and Erica, and I told them we're gonna just have, like, flowing conversations to try to pick our way through it because I I think it's sort of silly to just say, oh, when this happens, do that, and everything will be fine.
I think you need to hear people with diabetes. And then you and Jenny are in a specifically unique position. I mentioned this with her. Both of you have had type one for over, like, thirty five years. And you're professionally attached to, you know, diabetes in different ways.
You with therapy or with, you know, coaching people. And I just think it's interesting to hear you talk through it. It doesn't have to be super smooth or sound like a sound bite. I think it's just interesting for people to listen to a conversation like that. I I've got my hands in this too much.
I'm messing everything up. The settings are all over the place. Every time something happens, I I feel badly. I react. I do something.
I'm trying to fix it. I'm probably making it worse. Then that compounds on itself. Then on the other side, I feel like I'm failing, etcetera, blah blah blah. I finally find someone to help me put my settings into into into practice.
How do I keep my hands off it after that? And just let it play out for a little bit to see if what I did is actually gonna be valuable or if there are adjustments to be made. And what I noticed from talking to people is and and Jenny said the same thing, is that often people have trouble keeping their hands off it long enough to find out what's happening. So I appreciate it. Yes.
Helicoptering, Hypervigilance & Cortisol 18:44
My follow-up to that would be, how do you how can someone tell the difference between them be paying attention to something and that they're being hyper vigilant or helicoptering? Can you do other ways for them to see the difference? Because nobody who's being a helicopter, caregiver or on their own self is thinking they're acting that way. They always, every time I talk to them, feel like they're completely justified in the way they're handling it. You know what I mean?
Yes. So the the question is can you say that again? Why this
I tell what's reasonable and needed and over the top with my attention on this stuff?
I think noticing how is it impacting or impairing your your daily functioning. Right?
Okay.
Noticing, paying attention, responding to alarms from a posture of of calm and not a threat. Yeah. Right? So high if you are responding based on fear. Right?
Fear, as we know, is is a survival response mechanism. And so if you are operating from a place where you you become hypervigilant And this this kind of connects to what we were talking about in the, in the other series of agency and anxiety. Right? We we want to know that when we do something, this next thing's gonna happen. But when it doesn't, that increases anxiety and often then increases that sense of hypervigilance.
Well, maybe if I if I pay attention to it more, I'm gonna anticipate that I'm gonna do better.
Yeah.
I'm gonna be a better manager of my diabetes. But what we know in research, you know, will, validate this that if you are operating and functioning from this hypervigilant state, your body is in that hyperarousal threat response state all of the time. So, a, if you're the person living with it, you are you're battling the those cortisol dumps all of the time. Because even if you aren't let's say, even if you or your blood sugar is in range, but you're in that hypervigilant anticipatory state, your body is is operating as if you are in a threat. Right?
Like, a threat for your body
is And actually being threatened is the same?
Same thing. Yeah. Your body cannot differentiate. So your your amygdala right. We talked about our brain.
Your your lid is flipped. Your amygdala is is firing. Your cortisol is being dumped. And so you're fighting that within your blood sugar just from a physiological perspective, and it's hard to make rational choices.
Yeah.
Right? Your your limbic system has gone off, or your your prefrontal cortex has gone offline, so you are having a difficult time making rational thought. But it feels like you're being safer. You you're trying to tell yourself, I'm I'm I'm anticipating. I'm I'm gonna focus.
I'm gonna stare at the number. I'm gonna course correct all of the time, But it's actually counterproductive to not only your body physically, but also emotionally because you cannot think clearly, and you have all of these hormones that are interfering with the actual insulin absorption.
Yeah. And if you can't think your way through that, just look around you. And if the people around you are looking at you like, uh-oh, mommy's out of her mind. Then just go away. Maybe I'm acting a little crazy right now.
But like, I it is hard because I've interviewed I've just recently interviewed a woman who has these what she would have called overreactions to things and hypervigilance when it wasn't necessary, and we talked through them. Like, that's not even needed. Like, and then she could intellectually say while we were talking, yeah. I I know that that sounds, like, over the top. I said, why do you do it?
She goes, I don't know. Like, I can't, like, I can't even just after we named it, she couldn't stop herself from it. So, I mean, there are so many I'm just saying there are so many good reasons to find a way to overcome that because it's not good for you. I think it's bad for your short and long term health. And I also don't think that it creates a good ecosystem around the diabetes in general, especially if you're the caregiver for somebody and you're always hair on fire.
And while maybe your children are looking at you like, I'm just trying to live over here, she's acting like I'm dying every five seconds, or he's acting like because I used to do it too. I used to I've I've shared this a million times. My wife put me aside one day, and she's like, you you every time you look at her blood sugar, you mutter under your breath like shit. And she's like, you have to stop doing that. She's like, it's it's just it's so negative all the time.
And I never thought of it that way, you you know, until somebody pointed it out.
Yes. So we're having awareness of what what are you thinking? What is your body actually physically feeling when you look at the number? And I think that the shift, if we're if we're kind of staying on the the psychological flexibility track, holding space for, like, okay. Oh, that was fear.
Right? Like, use you muttered under your breath. That is fear, right, or frustration. And so it's like, okay. Oh, fear is here.
Mhmm. So instead of saying, oh, I shouldn't be I shouldn't be fearful. I shouldn't be scared. I shouldn't be frustrated that, oh, fear is here. Yeah.
I'm gonna notice it. I'm gonna create some space from it. And then just even that quick little beat can help you're you're acknowledging that you aren't being controlled by it.
Right.
I mean, this is this going back to also CBT. Right? Like, oh, there it is. It's there.
I see that. I'm afraid. It's okay. Let's pause for a second. Nothing imminently bad.
I don't want you to pause in the middle of an actual medical emergency, but, like yeah. Because the diabetes really is is it is it's training you to expect a problem to come. And and then maybe at that point, you know, you become defensive. Jenny talked about it, and in in her her bit. And then you're waiting for the next thing to go wrong and waiting for the impact of it.
And then you're hypervigilant before you even are, to be perfectly honest. It is really like you ever walk into a situation where you people have beat and you just, like, everything's already on a nine and you're like, this is just simmering. This is gonna pop in two seconds. I think living with diabetes can feel like that sometimes. Like, what's about to happen?
What's about to happen? What's about is it gonna kill her? Is it that's how I would think all the time. Like, I always felt like I was two bad decisions away from killing Arden,
which Yes.
Is I mean, listen. Technically, you could make the argument, but in in a real in a in reality, that wasn't true. Do you know what I mean? Like, we we were not on death's door every five seconds, but it I don't know if I was being dramatic or if it's how it felt to me. I don't think I was being dramatic.
I think that is actually how I felt. And I do think over time, expecting a problem, having a problem arise, expecting it, having it arise, not being able to fix it. Because back then, we didn't have any, like I didn't have any data. Like, I didn't have any CGM to look at or anything like that. It was hard not to live in a constant, like, just a perpetual motion machine of, like, it's about to happen.
It's about to happen. If you thought you hear people all the time, like, you know, back in the day, like, you see a a low blood sugar overnight and you fix it. And then you sit up and watch it for two hours. Long after, you know it's okay. And nowadays, like, if that were to happen to me, I'd look at it, see it, go, I did the right thing again.
I I put my head back down again. And then the if the alarm goes off again, it goes off again. But, like, I I I would be comfortable enough to go back to sleep, and I know a lot of people won't feel that way in the beginning. So why does the absence of a problem like, why does the the waiting create anxiety? Do you have any is there, like, a a human reason around that?
Why Waiting Feels Like Anxiety 26:57
Because it's unknown, and and anxiety wants to creep in and say, better well, you you better anticipate. You better worry. Mhmm. Right? Like, worry, you know, is when you feel like you, by worrying, we think we're it's perceived to kind of control even though we don't know we're not actually controlling anything.
But if we we feel like, oh, if I just anticipate, if I worry, if I look, if I think, then maybe the next outcome, the next reading, I'll feel better. I think we also maybe while we're in the waiting, if we've latched our sense, value, our worthiness to the number, we're waiting for either that positive dopamine hit
Mhmm.
Of, oh, I'll lay stack the landing. We hear that all the time. Right? Yeah. Yeah.
We nail I nail that bullet.
Yeah. Yeah.
I got it. Yes.
I felt that way before for sure. Yeah.
Yeah. I got Sure.
Yeah.
That is totally normal and natural. I feel that way too sometimes on on a random meal that I don't eat, and I'm like, oh, okay. Yes. Right. Great.
That's awesome. But if it's patterned behavior and a learned response to assign your worthiness to the number, then in that waiting period, it's hard. You're like, am I am I gonna feel good about myself, or am I gonna feel crappy about myself Yeah. In these next few minutes?
I just have my I just thought, like, well, diabetes is like it's like a horror movie director who knows exactly how to make you, like, put you to the edge of their seat. And while you were talking, I typed off to the side. I was trying to figure out, like, what are the human concerns that horror movies play off of? And it it I I got back a couple of different hits. It said, sometimes it's that something bigger, stronger, or hungrier than you exists, that your home, your body, or your beliefs are not safe, that someone has chosen you and reason will not save you.
Your own body can betray you. Your mind may not be a reliable witness. Society is is oh my god. Society is thinner, like being held together more more delicately than we think. The place that should protect you is contaminated.
All of those things don't somehow mimic diabetes. I'd and that just popped up in my head while you were talking. Was like, that's that's a 100% what it's like to live with diabetes. Either as a all those things are there. Oh, isn't that interesting?
And so then that's where that comes from. Alright. So let's transition to the next thing that Jenny talked about then. We were talking about pre bolus thing because this is gonna fit right into this. Mhmm.
The Pre-Bolus Wait: Why It’s So Hard 29:35
Why is it so emotionally difficult to wait? So I brought up to Jenny, if if I if if I if I sat down at 07:30 at night, flipped on a baseball game, took a handful of pretzels with me, sat them on the table next to me, And I am one of those people who would not use a dish in that situation, in case you're wondering. And and I sat those pretzels next to me on a table, and then you looked at me and said, Scott, you have to wait ten minutes before you eat those pretzels. I'd go, okay. Now given a way that in a situation where someone's low, they're gonna be ultra hungry, that's not what I'm talking about.
But when a person with type one diabetes is in that same exact situation, and you say to them, hey, put your insulin in and wait ten minutes, and then you're gonna have a far better outcome, etcetera. There are far greater people more than I've than I would say opposite feel this way. That it feels to me when I'm talking to them. I hope I'm I wanna be clear about this. It feels to me when I'm talking about them that they do not want diabetes to tell them what they have to do.
Or I've now come to think of it even bigger now that we've done the body grief stuff, that there's that feeling of, like, well, my body should just do this. That's not right. It's not fair. I don't want it to be this way. But why do you think and this really speak from your own personal selfish Mhmm.
End here. Why is it hard to do that? Like, I know it's difficult to remember the bolus before you eat, but in a scenario where the food is not an imminent thing that you have to attack, what's so hard about waiting? I just watched Erica disappear back into the 20 year old part of her brain. I did.
I did.
I I was like, okay. Where
You know what I mean? I I know you know what I mean, but what do you think?
Yes. Okay. So there's the waiting there's the remembering we're not we're not talking about remembering to pray bolus.
Right. Because different that's a different problem.
That's a different thing because that's but that's also a very significant
Oh, yeah.
Factor Mhmm. Remembering and and it becoming habit. So I think the but I think it's important to note. Like because a lot of time it is I forget, but then we wonder why do why do I forget? Because it's not built in to the rhythm of the the meal.
It's not built into it's just not become a habit. Right? So there's that component that is quite frequently Yeah. Can I have your for
an yeah but right there, and we can go back and forth for a second?
Yes.
Yeah but, if dinner was falling into a volcano and it happened three times a day and there were three opportunities for you not to fall in the volcano, I guarantee you'd figure out how to do that. So why is it so keep going.
And I wanna say, oh, and I wanna come back to I don't I don't know. I wish wish hopefully, someone will do a study on this because there are moments where there might be intention around choosing to not pre bolus or kind of intentionally forgetting. Right? Because you're caught up in the moment. You don't wanna be different.
You I'm thinking of, you know, adolescents going to the corner store after school. You don't wanna, like, have everyone everyone's starting to eat. Right? There are moments where you don't want diabetes to interrupt the enjoyment, glow, pleasure of life.
Mhmm.
I think that's that's a category.
I'll share with you what Jenny said. She said I I'm well beyond caring about this anymore, but
Uh-huh.
She could remember sitting at a table and just looking at everybody and thinking, why can't you all just wait? I have to wait. And she talked about it as, like, socially wanting to eat while everybody else was eating. Okay. It's the part that, like, that came to her when she was talking about.
I find this. I have to tell you, I find this little slice of conversation worthy of its own 10 part series.
Yes.
Seriously, this this spot right here. Like, why why can't I remember to pre bolus? Why can't I remember to put my thyroid pill in my mouth at night before I go to bed? Like, these little things that from the external look very little that but are clearly not to the person living through it. Right?
And, you know, I, you know, I used the idea of, like, falling into a volcano, but the truth is is that if you were on a I don't know. If you were on a medication that you had to take three times a day or you were literally gonna just shut off, you would do it. You'd set timers. You'd build your life around it if you had to. I I know you don't want to build your life around pre bolusing, but it has such a crazy positive impact on your present day and your future health.
It is hard to like, it's hard for me when I watch Arden go, oh, I forgot. And then she just sort of keeps going. And I'm like, why does she not feel the weight of that? And I do. Like, when she doesn't pre bolus, I feel it like she's gonna fall into a volcano.
And I know she's not. Don't get me wrong. Like, for adults who are listening, I'm not out of my mind. I get it. Okay?
I was like, but but I feel that way. I'm like, ugh. Big big miss here. It's gonna ruin the next three hours of her life. And then two and a half hours later, if she's got a high blood sugar, she's like, dad, rub my head.
I have a headache. You know how hard it is not to go, oh, yeah. I know you do. Because your blood sugar went up to one ninety f u eight, and, like
That's a shame. No. You don't know that. It's in my head,
Erica. I have to swallow it and live with it in the pit of my stomach. Okay? And so so so, like, why doesn't she or does she feel that way, the protect herself from the shame, she doesn't allow herself to pretend it matters. I can.
Anyway, I think this is all fascinating. Somebody should do a study on this, by the way. Not me. I'm very busy making a podcast, but somebody else. I mean,
yeah, the the categories around why someone remembers, forgets, doesn't care, doesn't know about prebolising. So we we've talked about the this just totally forget, and you're wondering why do we forget.
Yeah.
I think some of the time, it is life, but I think in a bigger picture, what is your relationship, and what's the narrative around diabetes? And I I will share I I forget quite frequently around dinnertime because it's a different time and a different we've got busy, you know, extracurriculars, life, work in the evenings. But I have I have habit paired, habit tracked stacked. My morning kind of cover bolus, that's automated. I don't even think about it.
I do it. Yep. Lunch is a hit and miss, but I I I do pre bolus, but however much time I have varies, and I feel the effects of that. And then dinner, it's the variables. So I think the but the question when you're going back to Arden, like, is it the aftermath of not prebull is saying you have these physical symptoms Yeah.
That are uncomfortable. And sometimes that might happen enough. Like, if you're in a relationship with your diabetes in a way like, wow. That kinda sucked. I'm gonna remember to I'm gonna really be intentional in remembering next time.
Right.
But if you hate your diabetes, if you are in kind of a resentful relationship with it, then, of course, you don't wanna think about it. And this we talked about this last time too, but then you have to think about it on the backside.
Are You in a Fight With Diabetes? 37:18
Is it almost like like fighting with a parent? Like, you like, you almost like, there's something indulgent about the fight? Like, if you're does that make sense? So if you're not in a and if you're not in a place where you're just gonna say, hey. I wanna be peaceful with my type one.
I don't wanna have a headache two and a half hours after I eat. I don't wanna feel tired or whatever. Again, I'm I'm the wrong person to talk about this because I don't know what it feels like to to have that happen afterwards. But but I've I've decided I don't want those physical feelings anymore. I'm gonna I'm gonna figure out a concerted way to make make sure I do this.
Right? But if you don't, then you're in a fight with the diabetes a little bit. Like, I'm not gonna give in. I always come back to when people say, I don't let diabetes stop me. My my back of my brain question is always, does that mean you're doing the things that you have to be doing to make sure that it's not hurting you, or does it mean that it's hurting you and you're ignoring it and not you're you're not letting it stop you?
Does that make sense? Right. Yeah.
Yeah.
Yeah. We And we've talked about it before because I'm fascinated by the difference between in between those two sentences. And so I wonder if sometimes, like, you know, sometimes people relish a fight in a situation. Like, they feel like they're they're trapped in a lifelong blood feud with somebody, they love arguing with them. I wonder if people like the I'm not giving up.
You can't make me do it portion of that. I don't I really don't know. I'll tell you what I wrote down. I wrote a note for myself. It says, pre bolus documentary.
Look for 20 adults and 10 children to speak specifically on this tiny piece right here about why is it hard for you to pre bolus. I might string them all together in an hour and a half long conversation and let people tell their stories, and maybe somebody can figure it out inside of it. Because it's a it's a real thing. It's there's if you're listening right now and you're like, I don't understand why this matters, go listen to the pro tip series because pre bolus in your meals is, I think, paramount to having stability with your blood sugar. And it's hard for people to remember.
I absolutely acknowledge that. I and I'm not telling people just shut up and do it. I'm trying to understand why it's hard and philosophizing around it. So in this scenario here, you know, I thought one of the most interesting parts of Jenny's conversation was more about it was about the waiting to see what happens, waiting before you correct, waiting before you eat, waiting before you're intervening, and, like, and I just kept thinking, like, why is the waiting, like, so emotionally uncomfortable for some people? Like, why can't they just do it?
And I don't think there's an answer. I don't think you have the answer. I just think it's interesting to talk about. So I don't know. For you personally, though, what do you think?
Do you think you're in a fight with diabetes, or do you think it's just hard to remember?
I think I I was, for sure, in a in a fight as, you know, teen adolescent, and absolutely did not wanna think about I did not want diabetes. So anything that was revolved around thinking about it, didn't wanna do
it. Yeah.
So that that, you know, that was a lifestyle of avoidance.
Do you think this touches other parts of diabetes? Do you think there's, more emotional stuff rather than the understanding of the education? Like, maybe the parts Jenny went over where she's like, if you do these things here, you're gonna have easier outcomes. Like, maybe people know those things and just pampering themselves to do them, even making adjustments to settings or keeping their hands off the stuff when they're not sure what to do. I wonder how much of it is actually fired by by the emotion of it rather than the the nuts and bolts.
I would probably say, like, 99%.
Erica's like, the whole damn thing. It got me upset, I'll tell you. Yeah.
Well, I think they're thinking about that, you know, her Jenny sharing, you know, when you're when she's pre bolusing, and then she's sitting around the dinner table, maybe you're out at a restaurant, and she needs to wait longer. So there's that you're making that choice, and there's a cost for each choice. Because, alternatively, I'm thinking, well and I might do this. I would probably say, oh, gosh. I forgot your pre bowls.
The the dinner's here.
Mhmm.
And I don't wanna lose out on the experience of eating a meal that's warm, eating while other people are eating, connecting, and sitting there kind of uncomfortably while everyone's digging in.
Yeah.
So I would maybe make the choice which has a cost
You would.
To just bolus and eat and maybe add a few more, you know
Is it any different in your mind than having a cigarette after sex or drinking a little bit when you know it might shorten your life? Like, that kind of thing? Is it maybe the same idea? I'm gonna trade a little bit of later for a little bit of now?
Maybe.
I mean,
it's it's it's the cost analysis of of pleasure versus pain.
Mhmm.
And your so how painful? You're kind of I guess, you're in analyzing how painful is it and what's the cost of okay. But you know what? Actually, I know I'm gonna feel much better on the backside if I just wait a few more minutes.
Yeah.
Even though the food's here, everyone's eating.
And it's just a personal choice, mate. Hey. I should say for young people, sex is when people get naked and put their genitals together. I know you guys don't do it anymore. And smoking is, you take a cigarette, know this is another thing you guys don't do anymore.
I'm quasi blushing over here. I'm like, oh my gosh.
Did you not know what it was? I didn't mean to be the one to explain it to you. I'm so sorry. Your mom should have told you. No.
But you need to
get more worrying if there are children listening and they haven't There's
no kids listening. If your kids are listening, shame on you. What do you think of that?
No. I think that's even worse. Stop.
Oh. No. No. It's Performing. I just what I said in the reason, I was like, is that even a good example for people now?
I hear you're all just by yourselves playing video games. I don't know. I I grew up in a different time. Okay. Let's move Okay.
You want me you wanna move on. I wanna move forward.
So numbers have improved. Okay? CGM looks more like we wanted to. Our settings are working. Our time and range has gotten better.
Why might we still feel exhausted even though we've gotten all that done? Like, could the emotional exhaustion itself become a habit?
Yes. Because your your body, your mind has learned that it it kind of restricts itself. Right? It feels like safer to stay kind of just as you can the body stay in a threat mode long after the threat gets smaller? Yes.
Because you your neural pathways have been kind of wired. Your that old tape of you you better stay on it. You better stay hypervigilant. You better anticipate.
Mhmm.
That has become so ingrained that if you were to to try and separate from that, that would feel scary
Yeah.
Or too risky.
Comfortable in the Problem: Foreboding Joy 44:23
I I'm gonna I've said this before on the podcast, so I'm comfortable saying it again. Plus, for reasons that I completely understand, my family doesn't listen to this. So when I met my wife, it did not take me long to realize that she was more comfortable when something was going wrong. And when things were good, it she looked like a a rat in a trap. It was it was really, really very interesting.
It took me a long time to make her believe that too. She was not happier. She was more comfortable if there was a problem. It was like it was like she expected there to be a problem, here it was. So I got what I expected.
This is good. And then our lives got better and then and calmer. And whenever it was calm, she was always, like, waiting for the the other shoe to drop. She was always thinking something bad was about to happen. It took her a really long time to get past it.
So if that's happening to you, I mean, Erica, do you have any idea how they could work their way through that?
I mean, that's the concept of anxiety and productivity. And Brene Brown had no shocker that I'm referencing her, talks a lot about this comparison. And are you are you anxious because you are needing to do a lot of things, or does that kind of fuel the productivity, or do you feel like that's reducing the anxiety by running on the the hamster wheel? There's also concept that you just talking about is the the shoe always gonna drop.
Yeah.
And we've talked about this way back when I can't remember in which series, but the concept of foreboding joy. Like, as soon as you feel like your settings are in place, as soon as you feel like, oh, things are stable, is it hard to let go of that fear? And if that's something you're really interested in, you can look up, you know, the the concept of foreboding joy, which is that, like, oh, I don't know if I can fully be present. Yeah. Because you never know when something bad's gonna happen.
And while we can acknowledge that part of that is true with diabetes, we also don't wanna be kind of attached and connected and feeding that that thought, which is a fear based response and trauma based response.
Hard to believe you're in a safe place sometimes.
Yes.
Yeah. Yeah. I you know, it's funny. Our dog is sick. That's not the funny part.
Our dog is sick. And my daughter today said to Kelly, mom is sad the dog is sick, but she loves that there's stuff to do. And she's like, look at her. She's, like, in her glory. There's, like, she's, like, running around handling things.
Like, it's it it really I I looked up. I was like, oh, but she's a 100% right. Like, she is just like, Kelly's, like, in her she's literally in her glory today. She's like, there is this to do and this to do and this to do. It's all very important, and I'm gonna get it done and blah blah blah, and makes her comfortable.
Pretty interesting. So
Yes. And and that could be also feeding into that sense of agency. Right? Like, she it feels good to do stuff and to get the outcome. And, like, I do x, and I know y is gonna happen, and that feels good.
Like, she's and it's probably feeding into that, which those concepts aren't bad.
No. No. No. Not at all. She's not like, don't get me wrong.
Like, she's not I'm I'm not like, oh, there's a crazy person downstairs. She's just she's like, she likes for there to be things to do. That's all. Yes. I also think my wife's one of those people who's happy when she's working.
And I don't think that's sad. Like, I think somebody who wants to be sitting around or or wants to have that other kind of life would look at it as sad. I think she's really I think she's at her optimum when she's working, and she enjoys it. So I don't stop her. Okay.
Identity, Grief & Who You Are Now 48:13
The identity problem. Jenny talked about people who become the controllers. They they learn how to manage little every little variable. What happens when being hypervigilant becomes part of your identity? Because then if you're not constantly managing, what are you doing if that was your job?
Which kinda comes in on the back of what we just talked about here with Kelly, Fem, and Happy. So that's, I don't know. Again, like, you'll find a hobby, but your hobby can't be the diabetes. Because that comes as close to the, what's that, Munchausen's by proxy as I can as I as I can imagine. Like, you don't want there to be a problem that you have to deal with.
But what what happens when someone takes it away from you? I can yeah. I can only tell you that I know it's real and that when my kids got older after being a stay at home dad for a long time, I felt, like, rudderless for a while. Like, per I I felt like I didn't have a lot of purpose outside of my job for a little bit. But I I'd like to know what you think about it.
Identity is such a huge kind of integral part of one's not only grief process
Mhmm.
And thinking about from a caregiver perspective, but also the person living with it. You know, who who am I now that diabetes is here? Who am I now that I feel like I have to be a pancreas for my child? So there's there can be and I'm kind of going off track a little bit, but we'll come back
Please.
To the hypervigilance. I think there's a loss. Right? There's a a real sense of loss and a perceived sense of loss around one's identity of, you know, who who am I now? So there's that needs to be greeted.
And then there's a journey of, like, reintegration of, okay. Now diabetes is here to stay. Where am I going to assign? Going back to that values question. Like, why am I here?
What am I doing? How can I still continue on in my journey with diabetes? Like, you're on you know, hanging out on my shoulder, but not weighing me down and not dictating, controlling my path. And for a lot of caregivers, there's even a greater sense of loss of, you know, from Kelly's perspective who really enjoy work and working outside of the home, so to speak, but feel like they might have to let go of that a little bit. Two, feel like they're helping their child manage their diabetes, and then you're kind of escalating with what does that mean to be supporting.
Do I need to be hypervigilant? What if I can't be hypervigilant? What if I don't wanna be hypervigilant? And what are I guess, the bigger question yeah.
Go ahead. The bigger question. Sorry.
Bigger question is what narrative are you telling yourself around who you are in relation to your diabetes?
I've interviewed more than a few people who have left their jobs to be stay at home diabetes parents and then taken and they were, like, they were earners. You know what I mean? Like, those people were they were out in the world hustling, and they took that hustle and focused it at the diabetes when it didn't really need all that energy. Do do you know what I mean? And then it did become their their thing.
So oh, jeez. I don't I boy, I don't know. So but so people, you know, how do you just let go of it if that's been your role for so long? And then suddenly someone comes along because I would hate for to think that you could possibly be sabotaging getting your set because in the end, this conversation, like it or not, like all my conversations, is about timing and amount. Like, I'm just talking about getting your settings right and putting in the insulin in the right time and then all the things that come from that.
I would hate to see somebody get in the way of making a problem go away because they're more comfortable in the in the shit. And they and they don't know how to make it go. Like, they don't they want calm, but they don't know how to exist in calm. And would that could that cause you to subconsciously get in the way of of a smoother path because you don't know where it would lead you. I mean, it's it's some pretty deep stuff.
I don't know if that's a thing anybody would do consciously. But, you know, I've seen people block their own happiness in a lot of different ways. So it's not out of the question. That's for sure.
I think if that were occurring, that would be, you know, very unintentional, but that's become their normal and how they feel like that's the only way they can survive. Right? It's like, how how do I survive knowing that I'm trying to keep my child alive?
Yeah. Or themselves too.
Yeah. Yeah. And and for themselves. Yeah. So thinking through, you know, what is it?
What happens when being hypervigilant becomes part of your identity? And how do you let go of that once you feel like, okay. My child has gone off to college, or or I'm an an adult, and I feel like I've figured it out,
so to speak. This algorithm on them, it's working.
Like Yes.
Yeah. Right.
I think there there's probably again, every story is different, but I'm wondering and would be curious around what is that the going back to kind of the value worthiness of if I let go, if I pull back, if I start if I choose to go back to work and if my child is at school or if I choose to not look at my CGM while I'm at work for all day every day
Mhmm.
And something bad happens, who who's gonna be to blame?
Yeah. I know that feeling. That's gonna be me. Yeah. Yeah.
Yeah. No. No one's dying on my watch. That is how it is how
it feels.
You know? Right.
Right. Yeah. So we are so Mhmm. It is like
You're gonna say screwed.
You're gonna
say we're so screwed. I know. God, I'm sorry.
We're so we're so we are so self critical. And from a caregiver's perspective or living with it, if we are attaching so much blame and shame to any higher low
Yeah.
Of course, then the answer is gonna feel like, well, I gotta stay on it.
Mhmm. Mhmm. Yeah. Because it will think
the work is looking at what what are you believing to be true about yourself if you try and step away from staring at the screen all day?
What Does Emotional Success Look Like? 54:47
I can tell you that not thinking about it all day is a lifesaver, and it it can be done in a way that doesn't hurt someone's health. That's that's my takeaway after doing this for just about twenty years. So, anyway, the the last bit here is what would emotional success look like? So what Jenny described as practical success was gentle rolling hills on your CGM, fewer interventions, fewer surprises, and less interactions with diabetes. But what does an emotional success look like?
Like, how would someone know, you know, that they that they've reached that place?
I love yeah, we're looking back. The general I mean, maybe some emotional gentle rolling hills. I mean, I know that's that's
Oh, I don't after by the way, after the horror movie thing, I just think we should just just say yes. Do this, but with your mental health. Because, honestly, gentle rolling hills, so less less Uh-huh. Ups and downs, fewer times where you're intervening, fewer surprises, fewer interactions where you're actually touching the diabetes or touching, you know, your your mental health, I guess. I mean, is there better maybe maybe maybe everything is everything.
You right? Well, you should be called Gary Curtis and just, like, sit in the field and I I we're all connected. Have I talked to you about quantum entanglement, Erica?
Oh my gosh. No. So I like well, I mean, even just like
the
gentle gentle rolling hills, fewer surprises. So when we're when you're living in an a hyperarousal state, everything is gonna feel like an attack and a surprise. Right? So going back to noticing when you have a Pigor Valley, wow. That it's okay to feel the feelings connected to those.
It's not about dismissing, ignoring, setting aside, being like, I shouldn't I shouldn't have done that, or I shouldn't feel guilty.
Yeah.
But in that process, you're also letting go of perfectionism. That's, I mean, that's easier said than done. That's a journey. Noticing, like I guess they on guard like, when you're feeling on guard Mhmm. Going back to what Jenny I think you said she people you you feel like you maybe you're on the defense.
Right? Like, you're always having to respond, and so you're by countering that, you might feel like you're on offense. So you're in this constant wrestling. So when you're and I know you're kind of this is framed from, like, once you're getting the settings right, how do you let go? So just being really aware, and it might take, you know, a lot of interpersonal work through mindfulness, through therapy, through slowing down your thoughts, but noticing what you're attaching to the peaks and valleys when they do happen.
Mhmm.
I have to tell you, I got emotional here at the end. I because, you know, if you give me a minute, at the end here, don't don't leave just yet if you're listening. This really this whole, like, conversation with Jenny and Erica, it it kinda bloomed out of a different idea. I was thinking through a conversation I wanna have with Erica about how much can a person really focus on at one time. And as I worked my way through that conversation, it it got to where it is now.
Don't ask me how that happens. There's a lot of thinking in the shower, and and trying to figure things out. And none of this is planned. So these really were and I and I will say this, I think you have the heavier lift than Jenny because Jenny can fall back on, like, you know, nuts and bolts conversations. I'm asking you to pick into, you know, therapy ideas and the the workings of the human mind and ask off the cuff questions.
You know, answer off the cuff questions that I'm asking you. So I I I I want everybody to know that I think this is a pretty heavy lift for Erica. She should be applauded for having this conversation like this without Thanks. Real without preplanning. Seriously.
But when we got to the end and you said that, maybe it's just gentle rolling hills and fewer interventions and fewer surprises. I thought, oh my god. This all dovetailed together. So love. I didn't know that was gonna happen.
But I will tell you that it's been my first of all, I think if any of this is interesting to you and you'd like to get things together, go listen to the pro tip series that I did with Jenny. I think it'll help you understand your settings and your timing much better. And it is my belief based on my own personal experience that when your basil's right, when your carb ratio is dialed in, when you understand how food impacts, when you get the timing right, those things, they lessen in your mind. They become more back mind stuff that just happens automatically, and your life opens up. And it it's just easier.
So it'll it's a little bit of work up front for a lot of good coming later. But I didn't I just didn't realize that it was gonna that it was gonna be a carbon copy of itself. In the end, you know, these two conversations are almost exactly the same. They're just they're just from two different perspectives about diabetes. And I also don't think we can avoid or ignore any of what you and I just talked about or what people went through.
Self-Compassion & Starting With One Thing 1:00:01
When I said how much of diabetes is something, you said ninety nine percent. Like, I I felt that from you. Like, this thing is I think it's way more impactful on people, aside of their physical health then maybe we either believe or want to allow ourselves to believe or maybe even have the the nerve to to be conscious of. Because it's probably just it could be really sad if you think about it all the time, like what this is, you know, and and what it can be. But I think there's easier ways through it, and one of them, I think, is settings and timing and amount and all that jazz.
So I hope this helps somebody, and I appreciate you spending the time here. Is there anything that you want to add to this?
I do. Thank you. Thank you. I think the acknowledgment that you just where you were landing that, yes, it is complicated, and diabetes is hard, and it is complex both emotionally and, you know, logistically. And I think acknowledging that, yes, is very important.
And simultaneously being mindful of how much you are exposing yourself to the diabetes is hard, diabetes sex narrative. Because if that is something that is infiltrating your brain, mind, body all of the time, it is hard to pause and take space like we were talking about today and practice that psychological flexibility. So it's it's going back to, yes, diabetes is hard, and I am doing the best I can. And I'm gonna be learning these tools, and I'm gonna be compassionate to myself. One last thing that the research has shown from a study of people that I did look this up from type one and and type two found that those who practiced self compassion had lower a one c's and less emotional distress than those who did not.
And so if you're hearing all this that maybe that that what Scott spoke to Jenny with and what in our discussion today, and you were hearing yourself say, that must be nice, easier said than done. I'm never gonna get there. I'm never gonna figure this out. Just even noticing if that's your narrative, you know, practicing self compassion isn't just a a kind nice thing to do. It actually helps you biologically to reduce those stress levels and those cortisone levels.
So I just thought we could you know, I wanted to end there for at least for me on going back to that self compassion and grace narrative is so important.
Yep. I would say that also that if you feel like you can't do it, I I normally joke and say, listen. I can do it. If I can do it, you can do it. But I I've I've brought this up once or twice recently, but there's a meme online that says, you can do it.
Juicebox can help about the podcast. And I really think that. I think if you if you really think you can't do the nuts and bolts side of it, go through bold beginnings or small sips or the pro tip series, whichever one, like, seems like it fits you better, And just listen to Jenny and I just chat about these things, and it'll sink in eventually. And Jenny was talking today about I was talking about looking at a a graph and knowing kind of pretty immediately what to do, but there 's still sometimes when I look at them, like, I think this is what has to happen, but I need a couple of more minutes before I get to it. But generally speaking, I'm a whether she would like to hear this or not, I'm an expert on how Arden's blood sugar works and how our physiology works around diabetes.
I can look at a graph, assess the situation, and pretty accurately know what to do next. Right? And it's not a thing that I'm it's not like writing math on a paper. It just it just happens. It's sort of like when I I don't know another way to put it.
Like, looking at art and knowing it's beautiful. Like, I look at that diabetes and I go, we got a bolus a unit and a half right here. Or we missed that bolus. We didn't count the carbs right. Or, oh gosh, I bet you we missed fat in this.
I know it in a split second, and it comes from experience and time. It's all it is. It's just time in the simulator and having seen it enough times that I know what I I know what it is when I look at it. I don't have to be told, and I don't have to wonder. I think people can get to that.
It just and I just under I understand that if you didn't get a good leap into it, if a doctor didn't set you up well, if a parent didn't help you, if you got caught on the roller coaster and your blood sugars got high and you got brain fog and you're having bad outcomes and it feels like you're just, you know and it must feel like going on you ever see those movies where surfers get knocked under and they film them, like, flipping through under the weight? Like, I imagine that must be what it feels like eventually. Right? And if you're under there right now and you think I'm I'm getting pulled along, I'm never gonna come out of this, it's absolutely free. I don't make any money when you listen to it.
Just go listen to the pro tip series. Like, I think you'll feel better. And if you are are having trouble with the emotional side of it, Eric and I have recorded so many conversations about stuff. It's it's on the website. Like, go to the website, find the mental health section, pick proof, find something, listen, give yourself that grace.
And and I think you'll I think you'll pop up out of the surf eventually. And and I've seen it happen to so many people who, at one point or another, would have described themselves as beyond help. So I know it's possible. I I hope you can believe that. And thank you.
I Yes.
Again, I appreciate
that. Yes. Thank you. And starting with with one thing is always the best way to start. As you you say that often, and I think it's important to note that as as you share your journey and reflection and observation and skill, if you're thinking that must be nice.
Yeah.
As you're saying, go back. Start with the project series, but also even smaller than that, just start with one thing
Yeah.
And take away one thing at a time.
If you're looking at functional, get your basal right first. I have a note here from somebody. I won't bore you, but having her on soon. She said, I saw your little estimator online about settings, and I put my stuff into it and moved my basal up by, like, at, like, 40%. And she's like, look at my graph.
She was 40% deficient in her basil. She had no idea. That one little thing could be a big difference for her. Uh-huh. Mhmm.
Alright. Erica, go, go go ahead. It's the weekend. I I release you. Thank you so much.
Awesome. I'll talk to
you soon. 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. I wanna thank you so much for listening and remind you, please subscribe and follow to the podcast wherever you're listening right now. If it's YouTube, Apple Podcasts, Spotify, or any other audio app, go hit follow or subscribe, whichever your app allows for, and set up those downloads so you never miss an episode, especially an Apple Podcast. Go into your settings and choose download all new episodes. A diabetes diagnosis comes with a lot of new terms, and you're not gonna understand most of them.
That's why we made defining diabetes. Go to juiceboxpodcast.com up into the menu and click on defining diabetes to find the series that will tell you what all of those words mean. Short, fun, and informative, that's defining diabetes.
- Trust is built from repeated lived experience, not a single good day. When a day goes sideways despite good settings, the skill is to notice the feeling — fear, shame, frustration — without treating it as proof the settings are wrong, and to resist overhauling everything. Erika frames this through psychological flexibility (from ACT).
- Hypervigilance feels safer but isn’t. Living in a constant threat-and-anticipation state keeps cortisol elevated, which makes clear decisions harder and can even work against your blood sugar. The goal is responding to alarms from calm rather than fear — and if that’s hard, support from a therapist can help.
- Worthiness isn’t a blood-sugar number. Much of the pain of “waiting to see what happens” comes from attaching self-worth to the outcome — the “stick the landing” dopamine chase. Noticing that pattern is the first step to loosening it.
- Not pre-bolusing is often emotional, not informational. People may know the benefit and still skip it — to not feel different socially, to not let diabetes dictate the moment, or out of a quiet fight with the disease. Naming which one it is matters more than being told to just do it.
- Self-compassion isn’t only kind — it’s measurable. Erika cites research linking self-compassion to lower A1C and less emotional distress. Pair it with starting small: take one thing off your plate at a time, and discuss any management changes with your care team.
- US Med — Where Arden’s diabetes supplies come from — this episode’s sponsor. Or call (888) 721-1514.
- Part 1 — Take Your Hands Off It: The Settings — The Jenny Smith half of this two-part conversation.
- Mental Wellness Series — Scott’s ongoing conversations with therapist Erika Forsyth.
- Diabetes Pro Tip Series — The settings-and-timing fundamentals with Jenny Smith.
- Bold Beginnings Series — The newly-diagnosed series.
- Juicebox Facebook Group — The private community — about 150 new members a day.