#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.
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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.
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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.
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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.
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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.
#1886 Game Set Match
Fifty-four years with type 1, diagnosed at three: stigma as a kid, retinopathy, a lost eye, gastroparesis, and the mental-health support that never came. An honest conversation about endurance.
Game Set Match
Cold Open & Sponsors 0:00
Hello, friends, and welcome back to another episode of the Juice Box podcast.
There were certain parents that wouldn't let their kids play with me because they were afraid that their kid would, catch what I had.
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57, and 54 Years In 2:35
Alright. So my name is Eric Gilbert.
Eric, how old are you?
57.
57. You have type one yourself?
I do.
How long have you had type one?
Fifty four years.
Wow. You were three.
I was three.
You weren't just three. You were three fifty four years ago.
Yes.
Oh, I can't wait to talk to you about this.
Yeah. 1971 is when, I was diagnosed.
The year of my birth?
Exactly.
Yeah. How do you like, Eric, when you're filling something out online and you have to scroll back in the year and it just takes forever to scroll that wheel to your birthday?
Your thumb gets sore after a while.
And then and the the thing that I'm noticing, I mentioned this to my wife recently, it used to be when I was younger and I scrolled, there were still a lot of dates behind my date and now there's not as many behind me anymore. Like, it's almost like they're like, yeah. Nobody born from here back is alive anymore, so we don't actually have to go to that. It's very upsetting. Have to
say That's right. Well, you know, surprisingly, my grandmother is 105 years old.
Is she really?
Yep.
Good for her. Or is it good for her, or is she like is she like, Eric, I got why won't he take me? Like, what what's her what's her quality of life?
She's pretty good, all things considered. She's up in a facility up in Wisconsin, and so she runs the roost there.
Look at her. That's pretty awesome.
Yep. Yeah.
Earliest Memories & Being Treated Like a Leper 4:10
Yeah. Yeah. Well, listen. What's your first memory of diabetes? I mean, you're diagnosed before you would even remember it.
Right? So
Yeah. I mean, some of the earliest memories I have is being rushed to the hospital to well, being rushed to the hospital is very little to have my blood drawn to have them check to see if my blood sugar was high. Another real vivid memory I have at a very young age is being extremely sick and being rushed to the hospital. And then the medical staff trying to put an IV in me, and they couldn't find a vein. And so they ended up sticking the needle into my shin Oh, okay.
To get fluids into me.
Eric, you remember that at three years old?
Oh, well, I don't know if I was three, but it was, you know, three, four, five. And, yeah, the pain of having a needle shoved into your shinbone at that age, is a lasting vivid memory.
Jeez. I would oh, gosh. That's not a great not a great memory to have. No. Did it get better from there, or what was it like I mean, what was it like growing up with diabetes over fifty years ago?
Antiquated. I was treated a lot like a leper back then because, you know, people didn't really know what diabetes was. So my mom reminded me when we were talking recently about this that there were certain parents that wouldn't let their kids play with me because they were afraid that their kid would catch what I had. So I just remember a lot of chaos and turmoil very young because, you know, at in 1971, in the early seventies, my parents were still, you know, young and trying to figure out how to keep me alive plus also raise their other baby son. So it was it was a lot of chaos.
And then just all of the unknown about the diabetes at that point
Mhmm.
The infancy of, you know, research and a true understanding of what diabetes is and how to treat it.
Oh, gosh. Your parents struggle a lot, do you think, with it, or was it because it was probably, what, one injection a day? Was it kind of out of sight, out of mind mostly, or have you ever talked to her about it?
It was it was a second full time job for my mom because, you know, she was when I was diagnosed, she was given a vial of insulin, say, keep your son alive. She was learning just as much as I was at that time. My dad was involved, but not as intimately as my mom was. You know, she had to cook meals for me all the time. She had to, you know, keep me alive and keep my you know, raising my brother at the same time.
So that's that's a big, responsibility, and duty for her.
Yeah. Did did you talk to her about it as an adult? Do do you know what her, I mean, her experience was? Did she ever share that with you?
I I don't think we've specifically talked about that.
Mhmm. Do you have the kind of relationship where you talk about stuff like that? You just don't talk about diabetes?
No. We she's always asking questions about the diabetes at this point, trying to I mean, I guess you can never not be a mom if you're a mom. So she's always concerned about my well-being, making sure I'm doing everything still I need to do, making sure that I'm getting to doctor's appointments, you know, things like that, helping out wherever she can. You know, she she picks up prescriptions for me when she goes to Costco and things like that. So it it's it's she's still very not as she's not as involved as she was when I was little, but she still is, an active participant in my management.
Mom, the Rock — and the Weight of Needing Help 8:30
Do you how does that make you feel that she's still interested after all this time?
Thank god.
Yeah? Why? Tell me what that support does for you.
Well, I mean, this is and especially having diabetes for fifty four years, it is draining, and it's difficult mentally a lot of the times. And so she's concerned about that. She's concerned about my well-being. She wants to see me succeed. And so, you know, she just takes an active role in making sure I'm doing okay.
She you know, at this point, she knows the signs of me getting low, and so she will give that nudge of, well, do you need something to eat, or should we stop so that you can get something to eat? You know, things like that. So I'm a appreciate
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Does it just give you the feeling like I'm not I'm not completely alone? There are people paying attention to me. Is it comforting? Did you have trouble over the years that would make her still worried about you today?
So yes. I mean, I appreciate that she still is interested in my well-being and making sure I'm doing well. Mhmm. There's been so many things over all the years where she has had to play a major role in my life because of the diabetes with all the complications and all that stuff that I'm sure we'll get into. Yeah.
So she'll you know, she was very very involved. I mean, at certain points of my life, she was, you know, my primary caregiver in my twenties and thirties Yeah. Just out of necessity. Hard hard
for her to let go of it, do you think?
I'm sure. Yeah. I mean, she's been involved with this since day one also. And but but she has also given freedom to take care of myself. She I mean, for lack of a better description of it, I'm sure as a young child, she babied me about it.
But that was out of the both of us learning and learning how to deal with this. So yeah. So, I mean, it's I'm very fortunate that I've had such strong family support
Mhmm.
At least from my parents. But still, it's a struggle. I don't feel necessarily seen all the time as you know, like, especially with my mom. Sometimes I wish that I wasn't seen by her, but, you know, that's just the mother's love for her child.
Yeah. Yeah. And so so even though it's interesting, isn't it? Even though you're really even at at this is really interesting, actually. So I'm gonna try to wrap my head around this.
So even though you've been at this for fifty four years, you're nearly 60 years old, You completely accept the idea that support is necessary for you, but it's still difficult to accept the support all the time. Sometimes it feels like too much.
Yes.
How do you square that circle?
Well, it's it is a necessity. I couldn't do this alone. I have friends that are supportive. I have friends that try to understand, but it's not the same as with my, like, with my mother. Mhmm.
She understands it. She's trying to keep up with understanding the evolution of the care for diabetes. My friends are sounding boards. My friends are shoulders to cry on. But she is, you know, she's the rock.
She's the one that when things are bad, I know I can go to her.
Yeah. Well, I mean, Eric, it's it shouldn't be lost to anybody listening that you're again, you're 57 years old, and that made you emotional.
Yes.
Yeah. You know, that's I don't know I don't know exactly how to unfold this completely because I'm obviously in in a I'm in your mom's position, and my daughter's had diabetes now for, gosh, almost twenty years. And I I see the same thing. Like, she needs help. She wants help.
She doesn't want help. She doesn't wanna think she needs help. And these things they're they're all happening at the same time. It it's not it's not like one day you feel one way and one day you feel the other way. When you're asking for help I mean, you're gonna tell me if you feel that way.
But when when you feel like you need help or you're asking for help, at the same time, there's another force inside of you that's making you feel bad for asking or making you feel like a child for needing it. Is that fair?
“I Don’t Want This” 17:07
I think it's fair. I think the way I see that statement of yours is is while it's correct, at least in my opinion, in in the way I think of things is I don't want this this damn disease. I never asked for it. So me having to ask for help, in my mind says that, oh, I'm I'm I'm not a complete person because I need help with this even though it's out of my control. Mhmm.
Now that is probably not good thinking because it's it's probably not correct thinking, because while my mom is willing to drop anything to help, and I'm sure you are the same way with your daughter, we have to we have to suck down our pride to ask for that help, and that's never easy for anybody.
I think you
And he
me, Eric, you already said the thing that I feel like is the core of the problem. You said, I don't want this. And that's the thing that strikes me. Because sometimes Arden and I will sit and talk about this stuff, and they're difficult conversations because she is sad and angry at diabetes, at me, at things that she shouldn't be. I feel the same way.
And and when when when you let all the emotions out and you let go of all the, I mean, the conscious stuff and you just let yourself be in it for a second, the only feeling I'm ever left with is I don't want this to be our situation. It just is. And Right. You you know, and what a there's the defeating piece of it. Right?
When you when you boil it all right down, you go, oh, we could fix all this right now if we could just make the diabetes disappear, which we can't do, so we can't so then that's where the problem begins to bubble up from. And then that's that's the first step of you losing perfection. Whatever the perfection of your personal relationship is on the day one when you're a little baby and she's holding you right there. Right? That first fracture happens, I don't know, when you wanna pick up a toy and she wants you to come into the other room or you don't wanna eat and she and so there these little fractures happen constantly between your consciousness and desires and her consciousness and desires.
And mostly, as humans, we're good at, like, growing up with those things and and keeping our relationships together. It's this thing right here, this diabetes thing is just it's way bigger than the rest of it. And you I think you can put safeguards in place and put great thinking practices in place and have good mindset and perspective and all of that. And all that does is what do they say? It puts lipstick on a pig.
You know what I mean?
Yep.
Yeah. And so at at the bottom, it's always gonna be that feeling of I I don't want this to be happening to me and and me thinking I don't want this to be happening to you. But at the same time, me thinking this isn't what I had in mind when I became a parent either. So Right.
Yeah. None of us signed up for this.
Exactly. Yeah. I'm sure there was an easier way to say what I just said. That was probably it. But yeah.
Anyway, it I think it's it's just really interesting to hear a person with your years of service in this thing, which I think maybe is how we should think about it. Your decades of service in in this diabetes thing, and and hers as well and everything else that comes with it. And to hear that you're still having the same feelings that probably an eight year old has, a five year old has, a 20 year old has with diabetes.
Yeah. It's it's never ending.
Yeah. But but having said that, Eric, do you think you live a good life?
I think I live a good life. Yes.
Yeah. Well, how well, let's figure out how to do that then. If that's the situation, how do you how do you get to the point where you can say that fifty years in?
A lot of a lot of support from my family
Yeah.
From my parents. Their their tireless efforts to help me. I'm sure it's the same with you that, you know, you're willing to do whatever you need to help your daughter no matter what, and that's the way they were. You know? As as a three, four, five year old, I think my mom was she was trying to absorb and learn as much as she could about diabetes so that she had a better understanding of it and then could translate that into how she cared for me.
And so, you know, I'm sure and I I I don't speak from that from that parental side of things. I only know because I live at 247, 365. And so I can't I I can't put myself in in my mom's or your position to understand that side of things
Yeah.
Because I don't have the perspective. That's I'm not the parent of a child with it. I am the child. And so, you know, in the early seventies and eighties, my mom was, like I said, a tireless tireless advocate to learn as much as she could to help me survive.
One of the most disappointing parental moments I've had is when you get down to saying to your child, I'm so sorry. I can't explain this well. You really won't understand unless you have your own kid. And because when somebody said that to me, I was like, what a cop out. You know what I mean?
But it's I'll tell you. Of all the things that you can't understand without the perspective, there's one of them right there. Like, I can't I can't articulate the drive inside of me to protect those kids. I don't I don't know how I can't put it into human words. It is only a feeling, you know, and and therefore, you get stuck in this situation.
I've been in the exact same situation you've been in probably where you're just you know, the person on the other side is like, I don't want this or need this. And you're saying, you don't understand. I can't not do this. Like like and then you and then if you're a good parent, then you have to swallow all of that and then stop. And that's really difficult.
That's that that really is the idea of, like, sometimes you just gotta let a high blood sugar be high for a little while so they can figure it out and that you hope that they manage it in a healthy way and it becomes a habit that helps them long term, but that you're not in charge of it turning out that way. That's a hard thing to, like it's a hard thing to accept. I think when you're raising kids do you have kids, Eric?
No. I don't.
No. When you have kids, the idea that you're gonna raise them to some sort of success and happiness, it it changes and morphs over time because I think the goal changes and morphs over time, which makes it all feel much more acceptable when it pivots and morphs. But when your end goal is a lifetime of health and you get farther and farther away from that when decisions are made, you can't pivot with that. You you don't you don't start thinking, like, I really hope this kid's a one c stays in a safe range. And then all of a sudden, it's a nine or a ten and eleven and you go, okay.
Well, I guess that's okay. It's be right? Because it's not. So Right. And if you push back, you're gonna you're gonna break your relationship up.
And if you don't push back, there's gonna be a health issue.
Yep. Yeah. Exactly.
You know, the only answer, Eric, is you did the right thing. Don't have kids. Wow. You can't you can't can't win, man. It's a win it's a game with no winning strategy.
Uh-huh. You know, even when you also, like, keep in mind when I say it's a game with no winning strategy, the saying you always want the thing you don't have is a 100% true, and it never shines brighter than when you parent a child well because they'll just find a different thing to be disappointed in. Because I think they're supposed to feel that disappointment to separate from you so they can go be an adult on their own. But then again, the health issue stops that from happening Yep. Sometimes.
Man, it's a shitty
Yeah. Right. Exactly. Exactly.
Well, what what
And we and we live it daily.
It's it right. Oh, not just daily. Right? It shifts by the hour sometimes.
By the minute.
Yeah. Yeah. Yep. What made you wanna come on and chat?
The Missing Mental-Health Support 26:14
Because well so for a couple reasons. One, I don't think there is enough, advocacy out there for somebody that's had type one for fifty fifty plus years. I don't think that people hear enough from somebody like me that's had it for over fifty years to see that, you know, it like, in your daughter's case, twenty years. Well, that seems like a lifetime, which it is, but you you can live successfully with this with this disease for as long as you want. Yeah.
And so, you know, I I think one of the biggest one of the biggest issues I see is that there is, excuse me, a tremendous lack of mental health support for type ones. And this is something I've struggled with for a very long time trying to find some help. And a year ago, I started with a a new doctor who is a, you know, a diabetic specialist. Mhmm. And she has she has a she's a concierge doctor that I found here in my town.
And she also has a counseling degree. And so in addition to all the work we do about the control issues, we've been getting into the the mental health side of things, and, you know, she's she's been a lifesaver. And because like I said, I've tried for years to find help on how to deal with the diabetes. And I've talked to, you know, various therapists and whatnot, and and nobody can relate. I was at a breakthrough t one d event a couple years ago, three years ago.
And so, like, one of the the big wigs from back in New York was there, and so, you know, they opened the floor up to questions. And so I asked a question about what's breakthrough doing about helping with, you know, the mental health side of things for diabetes. And the guy deferred to a panelist that was there, and it was a mother of a a child that had type one. And her answer was, we'll see a therapist. And that just struck me as a horrible response, and it filled me with anger and murderous thoughts towards this person because of I mean, I thought it was a flippant rote response.
Mhmm.
Especially, you know, as this thing
started In that setting too. Right? Yeah. Yeah. Yeah.
And, you know, and there was there were a number of people in the audience that were type ones. At that point, you know, I had, like, fifty one years, and so they recognized that or they asked anybody with over, like, forty years to stand up, and there was only, like, three of us. And then after fifty, there was just myself and a guy that was, like, in his seventies. And so to have that answer really set me off. And it just it just reconfirmed where I think there's a huge lack of support for all of us type ones.
What would you so, I mean, I hear the story. Like, you asked the guy attached to the organization. He's like, I don't know. Ask her. And she goes, I don't know.
You you so I get that, I mean, that's defeating in itself. But what would a good response have been? Like, what would you appreciate would have appreciated hearing?
I think something to the effect of, you know what? We we're doing something at breakthrough t one d. You know, let me give you some resources or here's my email. Email me, and I can get you in touch with those resources.
It would have been nice to know that they were working towards it and or had already thought about it, and they had a mechanism for spreading it.
Yes.
Okay. But they don't but in your experience, that was not offered?
No. And it's just you know, this will this will be my little soapbox. You know, I think, like, with especially breakthrough, they only care about the kids. They don't care if you've had type one for, in my case, fifty four years. You know?
I am, a black hole to them. You know? They only want my money for donations, but they're not willing to help me with anything. And that's been my experience over the years, not just with them. I mean, ten, twelve years ago, I was in a bad place, and I called Jocelyn's to see if they had any sort of direct mental health help.
And, I mean, I got passed around from department to department, and nobody had a solution. Nobody had an idea. Then there was you know, they couldn't even refer me to somebody that was you know, had a specialization in dealing with people with t one d for their mental health side of things. Yeah. Because, you know, we we can take care of the physical side of things.
I mean, hell, we've got so many different things that help, the pumps, the CGMs, all that stuff. But I just see that there is a huge lack of acknowledgment about the mental side of things.
I listen. I try to put effort into getting pump companies to make content with me that will help people use their pumps better because I even think that happens there where they're like, look. Here's the thing. And then you say, well, how do you use it? Yeah.
I don't know. You gotta go ask your doctor about that. And then you go to you know? And by the way, FDA does not allow pump companies to to give you direction about how to use their device. Actually, device manufacturers in general cannot act like doctors.
They're not allowed to. So forget that they're not allowed to, you know, but then they go, oh, don't Ask your doctor. You get to your doctor, and your doctor says, I don't really know much about that pump. And then Right. I mean, okay.
Great. So we're pumping out new new new content in the form of technology all the time, but but we're not really teaching people how to use it very well. And then, you know, I'm I I've tried over and over again to make content that will hopefully help people understand nuts and bolts ways of using their their devices better, even using the insulin better. Nobody even teaches you how to use insulin. Like, that's just this is your ratio.
Count your carbs. God bless. Like Right. Awesome. Thanks.
Have at it.
Yeah. Yeah. A little more to it than that, but okay, buddy. Right. And at the same time, like, I could put myself easily in the shoes of the people at the JDRF who are saying, like, look.
Here's what we're this is what we're focused on. We are not focused on the thing that you need. But then you're saying, well, if you're not, who is? Because no one else seems to be either.
Right.
Yeah. So is that just a thing that like, you either need one of those organizations to decide to be valuable in that space, or do you need its own organization to pop up and then who pays for that? And then how do you get the word out about it so people even know where it is with time? Like, almost makes the argument that it needs to be folded into a bigger place that already has attention and and you know where to go. Like, you think of them when you're going somewhere.
Right? It's a Right. Why going to the hospital can be frustrating when they can't help you? Because you're like, well, where else am I supposed to go in this situation?
And Right.
You you know, like, I I boy, do you think it's a limitation of society more than it is a limitation of JDRF, for example? It's hard not to be mad at them, though. Right, Eric? You've at this a long time.
Right. Right. And yeah. I mean, they're they're high on my list these days because, like I said, they just want the money. They don't care about if you're not a child, you know, by the age of, what, 16, 17, 18, you're an afterthought to them.
And so it's frustrating. In all honesty, I don't feel like outside of my family, my friends, doctor Sloan, the my my doctor I was mentioning, I don't feel like I have support. I don't feel like I have the support where I need it the most on, not necessarily a daily basis, but on a regular basis, meaning the the mental health side of things. How can somebody live with a disease, a chronic disease for fifty four years and not have some issues? How is it that you know?
And I mean and now talking to you, you understand because you you live vicariously through it with your daughter, and you do this podcast. But this is something that I can never take a vacation from. This is a twenty four seven, March issue. And as you said earlier, minute by minute, hour by hour, you know, thing that we have to address. That weighs that weighs mentally on somebody.
I mean, that's a big burden to carry. And so how and I I I appreciate your question of how do we do this? How how do we make this available? And that's that's the crux of the problem.
Yeah. You don't know. You're busy living with it. You you can't fix it too. Like, you need you really do need somebody else to put their brain onto it.
And Right.
Yeah. Yeah. And, you know, and and at this point
in life, I wish that, you know, ten years ago when I started, you know, identifying these issues, I wish I woulda had the ability to go back to school and get a a different degree than what I have. So that then I could have maybe, you know, been that that counselor for all these people.
What does what has worked for you over the years? You said you had an issue about ten years ago. Would you share what that was?
Gastroparesis & Losing 60 Pounds 36:55
So I've had a number of issues from the diabetes over the years Back in starting in, like, 2010, I started having stomach problems. And and and so from, like, December 2010 till January 2011, I lost 60 pounds. And it was you know, I went through testing, so much testing, and it was determined that I I have, gastroparesis.
Okay.
And so that was why I lost 60 pounds because I couldn't eat anything. I couldn't keep anything down. Anything I ate came right back out. And so, I mean, it got so bad that at one point, my doctor at the time was thinking that they're gonna have to put a feeding tube in me, and that did not sound appealing. And so I ended up going out to the Mayo Clinic out in Arizona.
They had a gastroparesis, excuse me, program out there that I went to and I learned about things and, you know, got educated on on how to deal with yet another side effect of the diabetes. Mhmm. You know, different eating, keeping the blood sugars down so that they don't go high, and that's what set it off. And so now, yeah, it's just another thing I live with, as a result of this diabetes.
Yeah. Hey. Do you listen to the podcast with any regularity?
I I listen to it, you know, a couple times a month.
Okay. Well, that's pretty regular.
The time. Yeah. Yeah. No.
But that that's that's regularity. So you but you're aware of how I tried to talk about it, about understanding how the insulin works, understanding how the food's impacting you, like that stuff. Is that a thing that would have been valuable for you to know sooner? Like, you just said, like, you know, what did they teach you? And the things they taught you are not, like, not incredibly, like, uncommon ideas modern day.
But I'm imagining as you were growing up, people didn't talk to you about stuff like that. Right?
Diabetes in the ’70s: Urine Strips & Pig Insulin 39:08
No. No. I mean, what what technology we had in the seventies and eighties is I mean, at the time at the time, it was revolutionary. Now, I mean, I think I I would guess the majority of people don't even know what we used to do. I mean, you're probably familiar with it, but when I was a little kid, I mean, how do you test for for, you know, sugars in your blood?
Well, had to pee into a little paper cup, take a little eye dropper, pull out some urine, put it in the test tube, five drops of urine in the test tube, and drop a tablet in it.
Yeah. It
fizz, and then it gave you a color spectrum, blue to, like, dark orange. Blue was you had negative sugar in your urine, and orange would meant that you had high high sugar in there. That's what we had. It wasn't until early eighties that they started coming out with the, you could test your blood sugar by pricking your finger and then putting that on a little strip, and then, you know, you had a meter that would read it. Yeah.
But Nice.
Probably feels like like a 10 lifetimes ago, I would imagine.
Yeah. Yeah. Exactly. You know, insulin back then was I mean, it was pig insulin derivative. We had two types, NPH and regular.
Mhmm.
The NPH was, you know, eight hour lasting, and so you do that. And I, you know, I I had a doctor back then that was a pediatrician endocrinologist. So, you know, he was he was very involved in diabetes and diabetes research, and so he always gave me the latest and greatest. I think it was high school when I first started doing multiple injections a day through all the research that was being done at the time. And, you know, anytime I would have to tell a doctor or a nurse or end up in the ER, you know, that I was on multiple shots a day, they're like, oh, well, you must be a really brittle diabetic if you're doing so many shots a day.
But, no, that's how your nondiabetic body works by having constant insulin throughout the day. That's what I'm trying to mimic. And so, you know, everything was such a shock back in that time period when I was first diagnosed. But I think there's at least for me, I think there was a lack of understanding about the bigger picture of diabetes. And and
every so every time something shifted or changed, you run into a person who really knows the way before that, but not this way. And then they become one of those people who's like, oh, you don't you you must be, brittle, for example. You're shooting so many times. So you're following you're following new teachings by being you know, trying to trying to honestly line up the insulin with the impact of the food. Right?
And then you then you're impacted by a person. You run into a person who says, oh my gosh. You must be doing this wrong because of this because they don't understand the new idea. And then the next new idea comes and it keeps happening. It keeps happening.
Fighting for the Next Thing, Not This One 42:40
Do you think that if someone from a big organization who is clearly not helping people in your situation right now, do you think they'd say, well, yeah, well, we're trying to do the thing, though. Like, we're trying to get to the next thing. Like, we're not we're we're not an organization that, like, is here supporting you day to day. We're an organization who is trying to make TZL work, make CGMs work, argue with, you know, legislators about something. Actually, I just remember something very recently.
Like, JDRF had a big, actually, that Eladon trial that's going on right now. I interviewed that doctor, and he gave a lot of credit to JDRF for their, like, basically, their work in DC about making things easier for him to do his work. And I I but it still seems incredibly unfair to me that you as the as the person with diabetes, like like, you're by the by the virtue of the day you're diagnosed or that anybody is diagnosed, you were planted on a timeline. And that timeline keeps shifting, but it doesn't it's not there for you anymore. Meaning, like, insulin gets better, pumps get better, people come up with algorithms that work better, organizations are busy fighting for the next thing, you know, at at the government level or or whatnot.
And you're back here going on the like, I'm the one living right now with the stuff that's available right now, and I need this kind of support. My hospital doesn't offer it. Just go talk to a therapist. How I don't even how am I gonna find a therapist who even understands diabetes? Like, I I'm sitting here listening to you, and I think that your converse that that your story is incredibly valuable to hear.
And I think it'll be incredibly valuable for everybody who listens to it. But my, like, my concerning takeaway forty minutes in is that the only person that this conversation is not gonna help is you. Does that make sense?
Well, it does. Yeah. And if I can help somebody else, hey. Great. I've I've done something that would that makes me feel good because I'm helping somebody else.
And, I mean, we haven't even touched on, you know, some of the other complications I have. But I think your your premise about, you know, these companies focusing on the next the next big thing is is, yes, they are they are working tirelessly trying to figure out how to cure this. I've been hearing for fifty four years that a cure is right around the corner. Yeah. You know, let's let's stop that false hope because it's been fifty four years in my case, and there's still not a cure.
Let's let's instead say, look. We are working diligently to make management the easiest it can so that you avoid complications. But further to your point, these these organizations, they they serve an important role. Like you said, the whole DC thing, the funding of all these research projects. But I think they could because who else is going to be?
You have type one or breakthrough t one d, JDRF, American Diabetes Association. I mean, those are the big ones. I don't know you even know if the American Diabetes Association is still around. But they are the ones that are in the public eye. They're the ones that the public, you know, probably is are are easiest to find those organizations.
Mhmm.
So why can't they incorporate somehow getting that mental health side of things? Because it's it's it it's not something that you can separate out. I wish I didn't have to, you know, have all these, you know, issues with my mind because that would make life much easier, not just for me, but for everybody. But how how do you how how do you deal with this on a daily, yearly basis? It's not easy.
Technology makes it easier, but that's still, it still is a drain mental drain.
Can I ask you two questions that both might be difficult to to answer?
Of course.
If I tell you let's just make up a scenario, right, where they do cure type one diabetes, but it's three hundred years from now. So you said even if I'm not helped by sharing today, hopefully, it'll help somebody else. So if what if your life being part of the, I don't know, part of the petri dish where they figure out how to die you know, how to cure diabetes three hundred years from now. Like, even though you won't be alive in three hundred years, if I told you that was definitely gonna happen, would you say, okay. Fine.
I understand you're not helping me, but eventually we're getting to it, or does that timeline make it like, because right now, what they're saying to you is five more years, five more years, five more years, which I think is I think it's cruel, by the way, to say that to people. Yeah. Right? But I get how it keeps people engaged. They think it it it lends hope to people.
I think it kinda does the the opposite. It's my opinion. But so my question is is that if you knew that what they were doing right now was gonna lead to a cure in three hundred years, would you stop would it would that stop you from feeling cross about how it's being handled right now? No. Okay.
And if they told you, listen. We can help you with the thing you're asking for right now, then we're not gonna get to the cure in three hundred years. Would you say, well, that's better serve the people that are here now, or would you say, no. No. No.
Leave me be. Let's let's go for that.
I would say let's see if there's a way that we can find a medium between those two extremes.
Yeah. Okay.
Because why should I be discounted now when when I'm here now? I mean, there there should be they should be able to balance it. Great. I I lead the way three hundred years from now. It's no longer.
So be it. You know? There's nothing I can do about that. Quit torturing me that there's a cure right around the corner. That's not fair as, you know, as what you said.
Mhmm.
But there's got to be a way to balance it.
I'm with you, Eric. I'm just I'm trying to play devil's advocate in a couple of weeks.
Yeah. No. No. I understand.
Yeah. Yeah. I'm I'm with you. I think that it should not be difficult for large organizations to put a strike team of people together to build even if it's just a list that you can email to somebody or a website you can go to to, like, search in your area to find, you know, a therapist that's either cash pay or or or otherwise may and and if those people don't exist, is there not something you could do to, I don't know, incentivize, young people going off to college to pick this up as a, you know, as a focus? I think that too when they're always telling us, like, there's not enough endos.
Well, spend some of that money on incentivizing people to be endocrinologists. You know what I mean? Like, what about, like, you know, you gotta go to med school, and med school costs x number of dollars. But guess what? If you become an endocrinologist and dedicate ten years to people with diabetes after you graduate, how about we'll pay, 20% of your of your student loans, or we'll give you a set amount of money?
Or, like, there's other ways to spend this money to try to spread good in the world. And and I don't even know that it takes that much. I'll say something now that I think is I hope it doesn't sound self serving. I don't I certainly don't mean it that way, but I think I motivate a lot of people to go into endocrinology and being a nurse practitioner and, helping people in the here and now. And that's just leading by example, really.
You you know? Like, there there's a lot of ways to there's a lot of ways to push towards good.
Right. And you're fortunate to have this platform that is so informative, and and it helps people.
Yeah. But can I yeah? But yeah. But it's not fortunate. I made this on purpose.
Sure.
Exactly. They could they could try and they and by the way, I I this is gonna sound like I'm talking about somebody specifically. I'm not I see all kinds of organizations with, like, this high mindedness that, like, they're gonna kinda copy the thing that I've done or, you know, try to do but they always do it wrong. They always make it too corporate. They always make it boring.
They always make it dry. They always turn it to something perfect on paper that nobody's gonna spend their time with. And then they'll they'll quietly and privately say, look. We made it available. They didn't want it.
Well, you made something available that doesn't fit into people's lives is what you did. You you know, like, you you it it has to be, like, you know, for for corporate people who are always running around saying stuff like meet people where they are, they sure as hell won't they're not good at meeting people where they are. They're good at meeting people where they think it looks good.
Right.
Yeah. Right.
You know, I mean, so I I think and this is just my perception that nowadays, you know, meaning the last five, ten years, I think that with the evolution of all the technology we have, it it has helped alleviate some of the complications that, you know, us type ones face.
Surely.
10,000 Lasers and a Volleyball: Losing an Eye 52:48
You know, better understanding, keeping your a one c's in range and and all that stuff. But, you know, one of so back in the mid nineties, starting '93, '94, I started having retinopathy issues. And I eventually, after so starting, like I said, like, in '93, I did my first laser laser shots in my eyes. Ninety four, ninety five, ninety six is when I went through living hell with my eyes. Over the over that period of time, I had over 10,000 lasers in in both my eyes.
I had, like, seven vitrectomies where they go and they suck the fluid out of your eye because it kept filling up with blood. Had a detached retina. And and finally, you know, I was I was three years of all this, my doctor was finally able to save both my eyes. I go out and playing volleyball. I get hit in the eye with a volleyball, and so that killed my right eye.
No kidding. Are serious? Yeah. Yeah. Yeah.
Because, you know, the eye was in a weakened condition at that point from all the surgeries and all the lasers and stuff. So yeah. So I lost my eye back in 1997.
No shit. Game set match, Eric. That's terrible. Oh, also a great title for your episode. Yeah.
Well, you go you go through all that, and you're like, that's it. I'm back to life, and then life hits you in the face, like, literally?
Literally. Literally. Yeah. Right in the
eye. Jesus. Oh,
I'm sorry. Yeah.
That sucks.
It does. It does. And so you
know? But did I
let that slow me down? No. You know? I I have I have vision on my left eye these days. It's not a 100%, but I can live.
I've had to learn how to readjust everything. Like, I had to stop playing, you know, a lot of contact sports, at that point back in the late nineties because of the depth perception. I've had to learn how to drive more cautiously because of the depth depth perception. I can't drive on open roads at night. I mean, I could get around the city with with enough, street lights and stuff, but I can't drive on the open road.
And, you know, I decided at that point in '97, '98 that I didn't have enough challenges. So I went to law school in starting in '99.
Did you really?
Yep. And so I I went through law school with one eye.
Are you an attorney now?
I am.
Oh, lovely. Kinda love your practice.
Right now, I am between jobs, but I had been doing construction litigation for a number of years.
K. Wow. That's really that's impressive, man. Yeah. Yeah.
Yeah. And so when I got done with law school and passed the bar, my right eye started, it became so painful that I couldn't live with the pain, so I had it, removed. And so now I have a prosthetic.
Oh, do you really? Do people know?
Yep. And no. I my right eye is, you know, semi closed on a permanent basis. Mhmm. And the eye does not does not move as much as the left eye, but the procedure I had, I went to a doctor in Fort Worth, Texas that was a specialist in, enucleations.
And so he did an implant where he tied all the nerve endings to this implant so the eye does move a little bit, but, I still look like there's something wrong with my with my face, with my eye.
Fascinating that they can do that. I knew a kid growing up, his father had I I mean, colloquially, I mean, we just call it a glass eye. Right? But, like Yeah. The kid the kid didn't know for a long till the kid till the dad told him he didn't even know.
And I was like, that's stunning. How did you not like but, you know, I guess you're just used to how people look. You don't think twice about it really when you're younger. Do you wear a patch, or do you do you how do you feel about it?
No. I mean, it's it's I have a prosthetic onion. So looks how you do it.
Yeah. That's how you roll. Do you ever wear a
patch? Only after procedures, you know, because you had to have it bandaged up and whatnot. But you know, as it
I'm sorry.
Go ahead.
No. I was gonna ask how having one eye made law school more difficult.
Oh, it was it was very difficult, because everything is about reading. And so, you know, what what took somebody maybe two hours, it take me four or five hours just because it it's difficult to, you know, read smoothly from line to line because it you know, it's makes it makes it difficult to track. And so yeah. So, I mean, you know, law school took a lot of work, long hours at the library and studying all the time. But, you know, it was
Worth it? You think it was worth it?
Yes. I agree with the
jobs now. You're probably like, well, I don't know about right now, but it was before. Right.
Right. It was something that it was a goal I wanted to do. And so it was worth it in that sense that even just with, you know, the one eye, I could do it, and I did it.
Showing it to yourself. Yeah. Yeah. Yeah. And do do you think AI is gonna mess with attorneys?
Yes.
Yeah. Because it's because they can read and understand so quickly.
Yeah. But they don't it's the you know, it's all the hallucination stuff where they make up cases and whatnot, and that's where Yeah. People are getting in big trouble.
They get past that, though, and then what? Like, law clerks? Like, that's gonna that's gonna hit people like that pretty hard. Right?
I I still think they're gonna have have the hurdle of unauthorized practice of law, and that's one of the the state rules in a lot of states, you know, that if you're not an attorney, you can't practice. So, know, eventually, they'll figure out how to get past that too.
Mhmm. Or they'll make somebody get certified to run the AI for the sit for the scenario or something like that?
Yeah. Something like that.
It's interesting. Yep. Man, so just to talk about your care for a little more. Like, you've obviously, you know, talking about your eye, you've had other issues. You know, do are are we not listing any of your other complications?
Can we just get them all out in the list to make sure we know what they are before we move forward?
Those are the main ones.
Managing Today: MDI, CGM & a GLP-1 59:57
The okay. We have them then. So Yes. Your care today, obviously, is insanely different than it has been. Probably you've probably iterated through diabetes a number of times over the years.
But how do you characterize how you manage today? Like, is are you I'm shooting for a five and a half a one c guy, or, like, what what's your goals?
Goals are to to have an a one c as close to six as possible.
Mhmm.
My my retina specialist, doctor down in Dallas, Texas, you know, he he's happy with things under, six five. So, you know, the last I think the last year, I've been six, six three, and six four.
That's awesome. And how do you accomplish that today? Like, what's your technology?
I have a CGM.
And you're MDI?
What?
Are you injecting insulin, or do you use a
Oh, yes. Yeah. Yeah. No. I still use I still use, pens.
I
Sorry. That that you're so old school. MDI, multiple daily injections. You were like, I don't know what what does that mean.
Yes. Exactly. I thought that was a new pump or something.
That's great. That was that's the first time that's happened in a while. You're like, MDI. I don't know what that is. Yeah.
So you're just with with the help of a CGM, you're managing with injections into a mid Sixes a one c? Yep. Fantastic. That's wonderful. Yeah.
Yeah. Yeah. I mean, talk to talk to people for a second. I mean, how big of a leap is continuous glucose monitoring?
Oh, it's life changing, especially for me. I am I am so desensitized to highs and lows.
Mhmm.
I I can't catch them. And so without the CGM, I probably would be in a lot worse shape than I am today. You know, my CGM was going off last night. I'm like, hey. You know, this is a great dream.
I keep hearing this beeping noise. I must be at a concert or something. No. I was 52. So I finally woke up and had a coke quickly.
And, know, would I have woken up if I didn't have a CGM? Who knows? I don't have to worry about it, luckily.
Yeah. No. It's a big deal. And do you adjust during the day? Like, I imagine you inject if you get a little too high, that kind of stuff?
Yes. Yeah. Yeah. I I you know, at this point, it's just second nature. Oh, you know, you wanna have a doughnut.
That's six maybe extra units. Pop that in there. Have the doughnut. French fries and hamburger, it's probably 10 extra units, you know, if you if you get a large fry or something. So it's just you know, by now, it's second nature.
But, I mean, I I am thankful that the CGM technology came around.
Yeah. Do
you And I started using I started using the Dexcom in 2011.
Okay. Yeah. It's early. Do you when you think of french fries as an example, do you think, like, oh, I just know french fries take extra over the carb count, or do you actually think about the fat impact of it? How how does like, when you're, like, taking care of it in the moment, what's your thought process?
I need to do extra insulin because of the the fries and the carbs. Okay. And, you know, it's it's interesting. I recently so things things for me have kinda changed over the last eight months because my doctor got me in a GLP one.
Oh, yeah.
Because and it and it's been great. I've lost, you know, thirty, thirty five pounds at this point.
Nice.
And it has done wonders for the management of the diabetes. Mhmm. My my Humalog pen now lasts, like, thirteen days, whereas before it was six to seven. Mhmm. My Tresiba lasts, you know, another week, week and a half than it used to just because I'm taking so much less insulin.
Yeah. It's interesting to hear how you quantify it. It's not like like, if you ask me, what does a GLP do for your daughter? I'd say, oh, it significantly decreases her insulin to carb ratio, her basal, her sensitivity. And you were just like, hey.
The pen lasts a lot longer, man. I'm using less insulin. Like, that's a really cool that's that's like some badass shit right there. You just you Yeah. You're you're a different era, man.
That's awesome. Right. Yeah.
Yeah. Yeah. I mean, it and it's it's like I said, it's been incredible what it has the GLP one has done for me. I mean, it's you know, granted, yes, it helps suppress the appetite, and so that's, you know, that's been helpful. But I was, you know, at before I lost all the weight, I struggled.
I mean, I worked out, you know, almost daily and would could get nowhere losing weight. Mhmm. And, you know, it's the the, what they call, the desensitization to the insulin when you're you know, have the extra weight. And so, I mean, holy cow. It's it's been pretty it's been cool that losing that much weight has had such an impact on the the control of the diabetes.
Oh, man. I see it with people all the time. It it Yeah. It really is I mean, your insulin sensitivity either rises or your insulin resistance goes away. I mean, you can think about it any number of ways.
It doesn't really matter. Right? It's just it takes less insulin to do the same job. You're you're probably getting low less frequently too, I would imagine. Is that happening?
I think I'm more steady.
Yeah. That that's another way
to put time?
More stable.
Yeah.
Yeah.
Right. Overnight still is a problem. And that's where I've I've had issues with that for a very long time.
What's your basal insulin? Were you using, like, Tresiba? Or
Yeah. Tresiba.
Okay. And you shoot it in the evenings?
In the mornings.
You shoot it in the morning. And you're still getting low overnight sometimes? Yep. So what do you think that is? Do you think it's, last meal of the day?
You're too heavy handed with that last meal, or what do you think it is?
I think there's any combination of it. You know, the like you said, the last meal of the day, that, what my activity level was throughout the day. Mhmm. If I did more activity, you know, I have a a tendency to drop in the middle of the night. You know, if I have too much of a snack before I go to bed, oh, then it do I get high and have to do a couple units to help bring it down?
And then does that crash me? Mhmm. And and and so it's always just it's frustrating, especially at night, living by myself. You know, I think there's I worry about it to an extent. But like I said, you know
Yeah. You're a great person to ask. So I'm just asking your perspective. I'm not telling you you're doing something right or wrong. Okay?
Why Not a Pump? 1:07:10
For that's not for you. You seem very reasonable. This is for the people listening. If I said to you, Eric, why don't you go get an insulin pump that has an algorithm running it that would, at midnight, detect that it thinks you're gonna get low in a half an hour and cut your base off and stop that low from happening? Why is that not an attractive idea to you?
So I see the benefit of that, and the benefit of the pump in general. But my problem with the pump is that, you know, a lot of them go on the back of your arm. And so with my one eye and my depth perception issues, I have a tendency to run into things. And insurance only pays for, you know, whatever it is, one or two a month or whatever the amount is. And so if I get if I get knocked off, I'm out, you know, whatever amount of money it costs.
And so then, you know, you're losing the insulin in that. And so while it's not conducive to my lifestyle at this point, maybe at some point it will. My doctor keeps, you know, having discussions with me about that. But I I just
Follow-up question. Are those things are those the things you're imagining will happen, or you've tried it and that's what happened?
Oh, I've tried, you know, like, the CGM on my arm Mhmm. The back of the arm, running into a door jam and ripping it off or, you know, getting it caught on something because, oh, I misjudged where that opening was.
Well, because you can I mean, you can wear pump sites on your abdomen? You could put them there. You could, I mean, my daughter wears her pumps on her legs sometimes or arm. But not her she doesn't particularly enjoy her arms. She does her abdomen a lot, her thighs.
I see people do it on the top of their butts. Like, there's all kinds of different places people wear stuff. I I would just I'm sorry. I would be worried that I'm I'm worried it's the wrong you're you're a grown person, but you're older than I am. But, like, all I would tell you is to try not to let your past experience, like, dictate what you think is going on now.
Because if Sure. You mean, even if you could get a couple of samples and try it for a half a hot minute, like, maybe that would happen. Like, you know, instead of making a complete switchover. I I mean, I'm just telling you, like, GLP, down weight, using less insulin, algorithm, trying to stop your lows, you might you might love that. You know what I mean?
Yeah. Yeah.
No. I I and it's it's you're not the first person to tell me I should look look into that. And, you know, it's something that I will, you know, consider at some point.
Setting your ways, Eric?
Very much so.
Yeah. Yeah.
Very much so.
Yeah. We all are. I was just wondering. Yeah. Yeah.
Right. Yeah. No. I and and I think I think part of it too is, the mentality of, damn it. Now I've got another thing attached to my body.
Okay. Why does that matter?
Some perceived freedom from this damn disease.
Okay. What if I said to you the freedom would come from not getting low as much, not being able to sleep more? Could you not see that as an exchange?
It is a different lifestyle thinking that scares me.
Okay. Well, that's fair.
Because because I've been doing it this way for so long. I I mean, I like I said, I don't doubt that there is much to gain from it. I mean, I think that's the evidence is the evidence exists that it makes a difference. So I'm just, you know, I'm just setting my ways, I guess. Antiquated thinking.
Yeah. I mean, it it's interesting because you you're a bright guy. I I didn't think you didn't know the things I was gonna say. I think it's just more interesting to listen through people's, you know, why why can't people change? Like, you because the truth is is that, I mean, you, you know, you have electricity in your house.
You must have enough money to, like, make this move if you have to. I mean, you're in between jobs. That's fair enough. Like but I'm imagining you'll be working again sooner than later. So, I mean, I don't know, man.
Like, I think it's worth trying. And then if you don't like it, like, fair enough. Whatever. But to say that it's definitely gonna be a problem or, you know, I'm it's something attached to me or another like, I mean, you you won't know till you do it. Right.
You know? And and it's just I I I can tell you right now that I watched my daughter use it, and the amount of effort she has to put into it is so insignificant compared to what you're describing even. It it's and I think it's just gonna get better too. You know? Like, I I mean, I I know you're probably been living for fifty years with people telling you, hey.
It's gonna get it's gonna get cured. Obviously, you don't believe that at this point and with, you know, with good reason. Right. But if I would imagine that that, like, it's just gonna keep getting better probably sounds like the same thing to you, but it I'm telling you, I'm watching it get better really quickly. Like, real
real That's interesting.
Really, really quickly. It's happening Yeah. Super fast. And I don't know. They're just they're great tools.
Be sad if my daughter wasn't using a pump because I I think it would add to her burden in the way you're describing imagining that a pump would, if that makes sense.
Right.
And sad sad's the wrong word. Like, if you're out there with MDI listening right now, you're like, don't be sad for I'm not sad for you. Like like, I'm just saying, I think I think you can do whatever you want. I think that's great. I think you're leaving a lot on the table by not at least giving it a shot, I guess, is my is the way I should put it.
Right. No. And I I I understand, and I appreciate that perspective.
Yeah. No. I imagine you do. You're a thoughtful guy. I'm I'm enjoying our conversation.
Yeah. Yeah. Anything that we haven't talked about that we should have or anything that feels like it got left out?
You know, at this point, I don't think so. I mean, I think we've covered
Did okay?
So yeah.
Aging With Type 1, Community & Starting Over 1:14:02
Yeah. That's fine. I appreciate it. And I appreciate you doing this too. And you're right.
There's not enough voices around this time of life, with all this. I I thought earlier to mention the t1dto100 website. I don't know if you know that one. I'm gonna pull it up here just so I make sure I have it. It's, it literally is t1d2100.com.
It's to help people navigate type one diabetes as they age.
Oh, interesting.
Run by a lady named Joanne Milo. She's been on the podcast to talk about it. But she's pretty, you know, locked in in the space and and, you know, she's an older person with type one. I'm sure she won't like it when when she hears that I said that, but she's a she's a she's a person of a certain age who has type one diabetes who's really focused on, you know, that. There's I know there are people who listen who are, you know, older too and simple concerns about, like, how do I place my pump when my hands get shakier?
How am I supposed to see these screens or do these touch screens and stuff like that? Like, a lot of things that you don't think about when you're designing for, you know, a younger person. Like, what happens when you get older? And Right. And do I lose my technology then?
Is that what happens? Like or and, I mean or is there gonna be some support? And, I mean, if we didn't learn anything from your conversation, we should have learned that there's probably not support. So Right. You really are on your own a little bit.
Yeah. Yeah. Yeah. Unless I mean, is community valuable for you at all? That that's that I I I didn't mean to, like, act like we were gonna stop talking and ask you another question.
But for a person like you who's lived for this many decades with it prior to the Internet, like, have you found the value of other people with type one, whether they're virtual or in person, or is that a thing that missed you because of your age?
I think it has, to a certain extent, missed me because of my age. I know that there's a fledgling support group here in Albuquerque that's just kinda getting going that, you know, a couple people are trying to start, and I've gone to an event with them, go to one with them this week. Good. But it it's it's the the it's the different perspective that I I I just can't necessarily grasp. You know?
I there you know, somebody like me, I've I've seen so much. I've gone through so much. I've dealt with so much that there's the the the discussions are incongruent from where I'm at. You know, I I want to engage and figure out how have how has one dealt with the burnout for multiple decades? You know, what what types of solutions or what types of steps do you have that helps alleviate that?
That is that's what I wanna hear as opposed to, well, you know, how do you use the CGM? Okay? You know, that's valid, and I'm not trying to discount it, but it's that the different levels of things. You know, can I help somebody understand how to use the CGM? To an extent, stick it in, follow it, you know, learn learn how to use it.
You know, that's very simplified, but I think there's value to them Yeah. To the communities. I just have not exposed myself to those.
Well, as you do that, I take my suggestion, if you would. Of course. It's not as much about you showing up and being like, I know how to do a thing. This is it. Now you listen and do it too.
I would say tell your story and just let that be what you you give to it. And then hope that they listen to your story and are able to reverse engineer and say, okay. Well, I haven't been out as long as he has, but he has real perspective that I don't have. But then be open to taking that same thing back from them. Because while they probably feel to you like they don't have as much knowledge or time in the simulator, What they have that you don't have as a starting point that is a starting point that was more is more modern than yours is.
Because I can tell you that I think the worst mistake you can make as a person who's been living with diabetes for five decades is to not appreciate enough to get over the nervousness that this thing is not the same as it was when you were younger and that you could reset yourself and start over in this new world if you wanted to. And that that probably would it probably would lend, I would think, not just health support, but mental health support too. Because a lot of the burden you've been describing over the conversation, it could be a burden based on your management style and your and your expectation of what diabetes is. I'm saying maybe it doesn't have to be that. Don't fight it.
Go with it and see what happens.
Sure.
Yeah.
No. And that makes sense.
Diagnosed today. If you were diagnosed today, you'd you'd somebody would say to you, we're gonna get you a continuous glucose monitor. Which one of these pumps do you wanna try? And you wouldn't say, oh, I don't want that thing stuck to me or but you would go, oh, is that how we do it? Okay.
Fine. Give me the thing. You know? And then whether you ended up with a t slim or a Medtronic or an Omnipod or a Twist or any of these other pumps, you'd quickly learn that, hey. This thing stops me from getting low, and my a one c is in the sixes, and, you know, it's not so bad.
Like like, you know, like, it it's I, you know, I gotta change it once in a while. And trust me, by the way, all that burnout stuff you're talking about, it's gonna apply to this new stuff too. Eventually, you're gonna get sick of swapping your site or you're gonna have a site go bad while you're at the movie or something like you know what mean? Like, it's all gonna happen. Right.
But your baseline changes. Like, your your expectation baseline changes, your health baseline changes, and, hopefully, your hopefully, your, like, mental burden changes. I I think one of the more interesting things about all of this is is that if I took somebody who was diagnosed last year and somehow was able to upload your feelings and experiences into them, they would probably realize that their shit ain't so bad. And yet Right. And yet, because that's the only perspective they have, their shit's pretty bad.
And and you do you know
what I mean?
Like and so, like, everything is just what you know. And I'm saying, you know, maybe there's some hope, you know, maybe there's some hope, Eric, that one day that, you know, the thing you know will lend you comfort when you try the new thing. And, that's what I would I would that's what I would encourage you to do, honestly.
And that makes sense. Yeah. You know? And I I appreciate that, that perspective and your willingness to, say those things to me because I need to hear it.
Yeah. Well, man, listen, man. You came on here to help people. I'm just hoping to help you a little bit too. And them, by the way, while they're listening, because most people feel the way you feel about especially if they've had this longer.
Right? Like, what are they gonna do? And even if they haven't had it longer, listening to your conversation, I mean, listen. Spoiler alert for those of you who are listening and haven't been around it this much longer. I'm not saying your life isn't difficult, but try to imagine your life through Eric's lens.
You you know what I mean? And maybe take a second to go, My pump shuts itself off before I get low. It's pretty awesome. You know? But, anyway, I I I really do appreciate you taking the time to share all this with everybody and me.
Yeah. I appreciate the opportunity to be able share it.
Oh, it was awesome. A great time, really. Yeah. Okay. Well, I I'm definitely gonna call this one game set match.
Okay.
Just because there wasn't a lot of lightheartedness in this. And, certainly, you getting hit with the volleyball is not one of them, but it was I do think it's a kind of a I think it can kinda be a poignant thought process here, which is, like, you fought through a thing and fought through it and fought through it and came out the other side, and then it still kicked you in the balls one more time. And Yep. And and but I don't hear a guy giving up, and I think that's really important.
Yeah. Because, you know, if I give up, what does that mean? I'm dead.
Yeah. Yeah. Right. Well yeah. Right?
Like, there's two options, get up and keep going or don't. And Right. Yeah. Yeah. I choose you.
Alright. Alright. Thank you. Hold on one second for me. Okay?
Of course. Thank you.
You just had a great time listening to the juice box podcast. You're on a high. You wanna do something else? Go to cozyearth.com and get yourself some beautiful sheets, towels, clothing. And don't forget those dryer balls.
20% off when you use the offer code juice box at checkout.cozyearth.com. Use the offer code juice box at checkout to save 20%. Listen to that deep voice. Go do it. I'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system, which of course anticipates, adjusts, and corrects every five minutes twenty four seven.
It works around the clock so you can focus on what matters. The Juice Box community knows the importance of using technology to simplify managing diabetes. To learn more about how you can spend less time and effort managing your diabetes, visit my link, medtronicdiabetes.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 contour next gen in cash. There are links in the show notes of the audio app you're listening in right now and links at juiceboxpodcast.com to Kontoor and all of the sponsors.
- Decades of management carry a real mental load that advances in physical care don’t address. Eric’s point is that mental-health support for long-time type 1s is hard to find — and that a provider who understands diabetes (his has a counseling degree) can be a lifeline. If you’re struggling, it’s worth seeking that kind of help.
- A CGM can be life-changing, especially if years of highs and lows have dulled your ability to feel them. Eric credits his with catching overnight lows he’d otherwise sleep through. Talk to your care team about CGM options.
- Insulin needs aren’t fixed. A GLP-1 added by Eric’s doctor drove meaningful weight loss and steadied his numbers, stretching how long his insulin pens last. Any medication change should go through your care team.
- Today’s automated pumps can cut basal to head off lows and ease both the physical and mental burden — and they’re worth trying even after decades of doing it another way. A bad experience with old hardware doesn’t have to define what’s possible now. Explore options with your provider.
- You’re allowed to start over. A long-held management style and a fixed idea of what diabetes “is” can quietly become their own burden; revisiting both with fresh tools — and trading stories with people at different stages — can lighten the load.
- Contour Next Gen Meter — The blood glucose meter Arden carries — possibly cheaper in cash than through insurance. An episode sponsor.
- Medtronic MiniMed 780G — Automated insulin delivery with meal-detection technology — an episode sponsor.
- Cozy Earth — Bedding, towels, and apparel — use code JUICEBOX for 20% off. An episode sponsor.
- T1D2100 — Joanne Milo — Joanne Milo's resource for navigating type 1 diabetes as you age.
- Ask Scott and Jenny — The listener-question series with Scott and Jenny Smith.
- Juicebox Newsletter — Sign up at the bottom of the homepage.