#1983 It Works for Me
It Works for Me
Michela is Italian, lives in San Diego, and has eaten low carb for over a decade. She explains why it works for her, what it costs her, and why the way people argue about it drives everyone away.
Jump to a moment
- She was handed a fixed dose and told to use it before every meal. Diagnosed as an adult during an already stressful year, Michela followed that instruction without questioning it, because a doctor said so. Finding Bernstein and reading his book is, in her words, the best decision she ever made — not for the dogma, but because it gave her a way to live she could actually follow.
- Her analogy is shrimp, and it's a fair one. If you're allergic to shrimp you don't eat shrimp, and your life is better without it. She doesn't frame low carb as virtue or discipline — she frames it as the thing that makes her feel well. She still has a bite of pizza or a forkful of pasta to remember the flavor, and she's clear she isn't strictly low carb all the time.
- She splits Levemir into three doses a day. Roughly six and a half units on waking, with the day arranged so each dose carries a fresh load across morning, dinner and overnight. She covers protein with a separate small dose an hour or two after eating, when she sees the rise start. Scott notes Levemir's shorter action is what makes that possible. One person's regimen, not advice.
- Menopause changed everything about her insulin. She describes perimenopause and then menopause affecting sensitivity more than almost anything else — and connects it to what parents of teenage girls describe. It's one of the few places anyone discusses hormones and insulin across an entire adult life rather than a single season.
- She and Scott agree about why low-carb arguments fail. Michela's position is simple: it works for her, it makes her happy and healthy, and people should respect it. Her objection is to the small number of very loud voices who go so hard that outsiders write off the whole idea — including telling parents they're killing their children. Scott's addition is that the aggression usually comes from people who were drowning before they found it. Asked whether she could bolus for a ninety carb meal, she says yes — she'd under-dose deliberately and adjust after.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Juicebox Podcast Facebook group — The private community, free to join.
- Juice Cruise 2027 — Scott's suggestion to Michela — meeting the community in person.
Every word of the conversation
Hello, friends, and welcome back to the juice box podcast. On today's episode of the podcast, there will be nothing that you should take as advice, medical or otherwise. So please, please consult a physician before making any changes to your health care plan or becoming bold with insulin. Hey. Three things fast.
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So hi, everybody. My name is Mikayla. I'm Italian, and I live in San Diego, and I have type one diabetes.
Oh, good morning, Michela. How are you?
I'm doing good. A little bit nervous, but good.
Nervous about her accent2:16
But you told me before we started recording, you're nervous because you're worried about your accent, or are you nervous for another reason?
Most because, of the accent because, I... I'm always worried about not finding the right word to explain, especially when we speak about type one. So, I want to to be more precise. And and when I'm nervous, I get, you know, confused, and my brain switch back to Italian more easily.
Well, if you need to switch to Italian and speak in Italian for a couple sentences to find your thought, just keep going. Don't don't worry about it.
Okay? Sounds good.
So how long have you had type one?
Thirteen years. Yes.
Thirteen.
I I was late, onset. I was, 33 years old when I was diagnosed.
Are you married?
Yes. You are? Yes. Married, and I have a kid. We adopted, immediately one year after diagnosis.
So it was a a busy couple of years, I have to say.
Wow. You got diagnosed and adopted a a baby or a child or how old?
A baby. Yeah. He was a newborn. Yeah. We were in the process of adoption when I got sick, actually, and it stopped a little bit.
It slowed a little bit, the process because I had to focus on my health. And I was kinda depressed, honestly, because, it was a shocking event in my life. And then my son arrived, and he literally saved my life and my mental health. And I'm the happiest person since then.
Look at you. That's awesome. Are there Yeah. Other people in your family line who have type one?
No. Just you? As you've probably heard many times, I'm the first and only with either type one or type two in my family. So Okay. The the the first one.
And in fact, at that time, I barely knew what it was, to be honest. I... It was shocking also for that reason, I believe, because it was so unknown for me.
Yeah. Of course. Prior to the diagnosis with diabetes, did you have Hashimoto's or celiac or anything like that?
I've had Raynaud disease syndrome. Sorry. Raynaud syndrome. You know, when you have all your hand and feet super cold since when I was a teenager. And, after I got type one, I've read that, very...
It... It's an autoimmune disease, and very often, people with type one have that and start with that, actually. So Yeah. You know, it was it was... But it was the only thing.
After diabetes, of course, it messed a little bit more with my hormones. So also, Ashimoto came along the way. I believe that once you start, you know, it's a it's a ripple effect. Once you start with the autoimmunity, it's, the body, you know, gets gets confused, let's say so.
Wilding. It's wilding is what it's doing. Yeah. Are there other people in your family who have other autoimmune issues? So you, Raynaud's, and now Hashimoto's.
Actually, just my mom with, the Hashimoto's, and that's it.
Okay.
So I have I have a pretty healthy family. So sometimes I joke with my family and saying, I'm the only one who's taking a lot of pills and a lot of medication. You're all doing fine. I mean, my parents are in their eighties, and they, they're doing great, honestly. And I'm happy with that.
Good. So
Oh, that's awesome.
I I was the the the unlucky one.
Well, how many, people in your family? You have brothers and sisters?
Yes. I have a brother, and he doesn't have any any condition. He's he's healthy. I want him to be tested for, for everything right now because I'm kinda worried about him, but, he's doing fine.
Is he older or younger?
Older. He's five years older than me. Six years. Sorry. Six years older than me.
He's 52?
Yes.
Okay. I I... Everyone has to be impressed with my math. I mean, if you're not, I don't know what you're doing. I I pay I pay such close attention.
Okay.
Yeah. You are. Thank you.
So your brother's 52. Your parents are in their eighties. You're... I got the whole thing. Okay.
So Yes. Let's talk And
they're all in Italy because we live in San Diego, just me, my husband, and our son, but all the family lives back in Italy.
How did you make it here? Did that boy make you move? What happened?
Well, life is, unexpected, as you know. So, actually, fifth... Sixteen years ago, we moved to for my husband.
Oh, you broke up. Hold on one sec. Mikaela, you broke you broke up for a second for your husband.
I'm sorry.
Don't be sorry.
Yeah. Yeah. We moved, to Singapore, for my husband's work, and it was supposed to be a three years, you know, work experience. And then he became five. And while we were there, he was given an opportunity to work for a company here in San Diego, and we decided to to move to to San Diego.
Also, because while we were in Singapore, I got sick with type one, and we adopted our son there. And so we felt that, The US were a better, option for for our family, and, actually, we're very happy here. I wouldn't change a thing in our, you know, living experience.
Of Italy, Singapore, and San Diego, the weather in San Diego is premium.
Oh, yeah. Yeah. Yeah. Of course. Here's the best.
I mean
Yeah. I mean, yeah, I've only been there once. And I... As soon as you walk outside, you go, oh, well, this is why everything's so expensive. They don't want us here.
Yeah. Yeah. We we we pay for, you know, the blue skies, the sunny days, the the the the dry weather. Everybody's happy here, and I I think that the weather is helping in that direction.
I think they're
just Whenever it rains Good. Yeah. We are so disappointed.
I just figured you're trying to keep the rest of us out and with good reason because it is... And I just lied. I've been there twice, but twice in, like, quick succession, which is a bummer. I was there one time with my family to vacation, and I was just there this year to make that Omnipod five commercial that, people might have seen online.
So Yes. Yeah.
So that
I didn't know it was recorded here in San Diego. Top of mind. Next time you come, you should let me know,
and we
can meet in person.
Oh, up in the hills Temecula. Am I saying it right?
Uh-huh.
Beautiful.
Oh, yes. Temecula. Yes. Yes. Oh, there is a a more inland and, northern compared to where I live, and it's way more hot.
Especially this week, we are going through a heat wave, so it's got... It's super hot for for San Diego. And, in Temecula, they are past the 100 Fahrenheit, this week.
So it's, like, hot. Day I was there, Mikayla, it was lovely. I was up on this. I felt like I was on the side of a mountain somewhere at a farm. The Dexcom g seven is sponsoring this episode of the Juice Box podcast, and it now comes in ten and fifteen day wear times.
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If you're interested in learning more about either of them, using my links really will help the show. Thanks for listening. We're gonna get back to the show. My goodness. It it was a nice breeze.
I got a beautiful tan. I didn't work. I I don't know if people know how this, like, filming stuff works, but I was there... I think we got in the bus at 8AM. I was probably there by 9AM.
I didn't work till five, and I worked for, like, ten minutes. Wow. And the and the rest of the day, I just sat out in the sun like, ugh, this is awesome. I finally get a day off. So
Fantastic. Well, you know that Temecula is famous because there's a lot of wineries, so you can go and also tour all the wineries. And sometimes, it looks a little bit like Tuscany. I mean, all my friends from Tuscany will scream at me, but, it looks a little bit like Tuscany because of the hills and all, you know, all the, the grapes. Yeah.
It's really beautiful. It feels like being on vacation. Absolutely. But also for us, even though it's, like, forty five minutes from where I live, it's beautiful. And I have a lot of Italian friends
Mhmm.
Who live in Temecula, and and they love it there.
That's awesome. Well, I wanna find out about being in Singapore and getting diagnosed. So, I mean, is there That
was rough.
I was gonna say, how did that how did that go? I mean, what did you notice first? What got you to a doctor?
Okay. It it it was very, weird. And after experience... Everything, I have the feeling that they're not very prepared, at least at that time, so thirteen years ago, with a diagnosis with type one. I was losing a little bit of weight, but I've always been slim.
So it's not that I was... I lost, like, 20 pounds. But I've... I I was having weird tinglings in my hands. Like, you know, when you sleep on your arm and you don't feel those, you know, tinglings in your hand because the the blood flow is not working properly.
Tingling hands, and a stressful year13:15
So you just change position in your bed and, okay, the hand goes back to normal. I had that sensation for an entire day no matter what I was doing, and that was very weird. So I went to the doctor, and I said, okay. Maybe we can do some blood work. I don't know what's going on.
Maybe I... You know, I'm deficient in something. We were very stressed because we were in the process of, trying to adopt a baby, and it was a very stressful time of of our life.
And
and so I I... They ran just, you know, the basic, tests, and my glucose levels came up super high, like, the three hundreds. So they called me, to go to the office. And at first, they said, okay. You have to see the endocrinologist.
I was sent to an endocrinologist. I saw the endocrinologist right away. So that was really fast. But they thought I was type two because I was, you know, 33.
Yeah.
So the the the guessing was, okay. She has type two. And so I was given metformin and, sent home with a booklet about how to, you know, look at the plate to proportion the, you know, the contents of the food, and that's it. And I was given a meter, to test my glucose levels. Nothing else.
No support. No, you know, training. Nothing. So I can't... While we were waiting for the, the results for the test of, the remaining, production of, insulin by my pancreas, because that test took, like, a a week to to arrive at the results.
So in that week, I was testing, and my glucose levels were always super high. And it was very stressful because, you know, freaking your finger, not being used to do that, it hurt like crazy. Now if I think about it, I I I find it silly because I I do it, you know, without even thinking about it now. And, and nothing changed much. And so they called me a week later and said, you know, your production of insulin is zero.
It's definitely type one. We made a mistake. You have to take insulin. And so they called me in, and they gave me a a mixed insulin, which I've never seen after that. So it was not...
Neither a a fast insulin or a basal. It was a a mixed type
Mhmm.
Of insulin. And I was given that and told to inject the same amount of, you know, units, before every meal. That's it. I followed the instructions, and I was kinda lost at the supermarket. I didn't know what to buy.
The same dose before every meal15:59
I was really at at a loss. And, after a few days of injecting the same amount of insulin for every meal, after a dinner with salmon and vegetables, which was very low in carbohydrates because there was basically just, you know, the few carbs of the vegetables, I crashed, and I ended up in a, in the ER. Okay.
So so you gave yourself an amount of insulin that was just way greater than what you needed, but you would have no idea why you
would have no idea. Because I just... You know, the doctor told me to do that, and I listened to the doctor without, you know, second guessing. And it was everything so so surreal. It was like living in a in a nightmare.
So I was really, like, you know, carried away by the the events, and I was really mentally imposed. So I was just doing what I was told to be do... To be doing. And that was a wake up call for me. Because after that, I said, okay.
No. This is not the way I wanna live. I don't want to to do something I don't understand anything about. And I started to read. I read all the books, that, existed about type one diabetes.
And I discovered, doctor, Richard Bernstein's
Mhmm.
And his low carbs diet. And I started to to become a low carver. And since then, I've been on a low carb diet, and I follow his, his guidance. And that was, in my opinion, the best decision I've ever made in my life because, after that reading and reading his book, I figured out what was the best solution for me to to to live a normal life for for my stands up... For my standards, for for my lifestyle, for everything.
Finding Bernstein, and reading the book17:54
I'm so glad you're on today because just yesterday, I interviewed a person who sat and told me the exact opposite story that you're gonna that you're gonna tell me right now. I found low carb. It was okay, but we didn't like it. We kinda forced ourself to it. I think it might have given my non type one daughter and pushed her towards an eating disorder.
I found the community to be unkind. Like, that's the whole story. I just... I can't wait to hear the other story. I can't...
I'm super excited. So you so you get low. That scares the hell out of you. Makes you scared of insulin, I imagine.
Yes.
You you like the idea behind, you know, Bernstein and and low carb, and I bet you what really attracted you was the idea of, like, low numbers. Right? Small amounts of insulin.
Yeah.
Yeah. Go ahead.
Yeah. The the rule of the small numbers, so you need a little amount of insulin and to cover not many carbs. And in this way, the the the possibility to make a big mistake, it's definitely lower. It's it's a rule of the the the small numbers.
Think there's no doubt.
Call it.
Yeah. Yeah. Right.
And and it it... Honestly, it works. But as I as I said before, I found that it works for me, but I also learned that you have to adjust it to your lifestyle. I've met, I have met two days ago, a mama of Akira, and she told me, oh, yeah. We started the locale, but it was too much work, and then I gave up.
Yeah. Because many people, you know, they bake everything. They make a lot of things at home. They drive themselves crazy to find, you know, ingredients to make a specific, you know, recipe in a certain way. Mhmm.
That is stressful. I agree. I just... I mean, I'm a very basic low carb, so I eat protein and vegetables. And and I I limit, as much as possible, my carbs intake.
So I I don't eat pasta or pizza or rice. But there's a lot of other options to put it back in it, and I don't have to bake necessarily everything. Plus now here in The US, there's a lot of products that are keto that works perfectly for us... For a low carb diet. So you can find, cookies like the HiKis.
You can find ice cream. I mean, if you want to have, you know, something like the the food you used to have in the past, you can find it without having to bake it yourself.
There's a fair amount of options. So... But, Mikayla, I got it.
My family, I I cook regular food for my boys. So I prepare, I don't know, pasta. I prepared pasta for lunch for my son. He he doesn't have type one. I don't have to force him into my lifestyle.
I just try to make it... To keep it simple. That's, in my opinion, the way to make it manageable. And you feel... When you feel better, you see that it's the the best solution because, you...
I I find myself, thriving in this lifestyle, and I don't
Isn't that
fantastic? I don't know. A cake or something like that.
Yeah. No. First of all, that's fantastic. I I love that you found an answer for yourself. I mean, it couldn't be better.
My question has to be because I feel like everyone listening is is saying to ask you. It's like, you're not just Italian. You're from Italy. You you stopped eating you stopped eating pizza and pasta and bread, and that was not an issue for you?
No. No. Honestly, no.
Tell people why, though.
Like being allergic to shrimp21:39
When you're allergic, I don't know, to shrimp, you don't eat shrimp because you get sick, and you can live your life without eating that because without eating that, your life is better. And my mental approach is the same. I don't want to feel crap because I want to have a slice of pizza and then don't sleep the whole night because my numbers are crazy, and I feel miserable miserable the day after. It's not worth, you know, the... All the the mass that it creates to to my body and to my mental health.
And, you know, carbs can cause, you know, dependence. You know, it's like a drug addiction. So you're addicted to to carbs the more you eat it. The less you eat it, the less you care. So I honestly, if I want to have, you know, like, a a bite of pasta, I can do it.
I just have a quick bite. I check my numbers. It's not a big deal. I don't have a, you know, whole bowl of pasta, or I just have a bite of pizza just, you know, to remind me of of the the flavor. And sometimes, I find things that taste different to me than it used to taste before because, probably, I'm not used to all that sugar, for example, that you can find in a cake.
Sure. So if I sample a cake, I say, oh gosh. No. It's so sweet. I I cannot I cannot have it.
So I really... And the funny thing is that everybody, when I'm back home, they're saying, oh, Mikaela, are you okay if we eat pizza in front of you? And I said, yeah. That's fine. I'm having whatever I'm eating, and I love it.
I mean, I don't I don't care what you're eating. I'm fine. I'm really I'm really fine.
What would you say to somebody who heard you say that and then said, well, I eat pizza and pasta, but I learned how to bowl is for it, I don't get high, and I don't get sick, and I don't get low later?
I mean, good for them. If they they figured it out. In my experience, especially in my body, I know that I would need a lot of insulin to cover that, and that scares me. And I've had my few episodes of, you know, being unconscious because of a hypo because probably my body is very sensitive, and, I don't want to run that risk anymore
I would not.
And for my for my, you know, family. Because my husband and my son were with me, and it's not fun to see somebody, you know No.
No. No. Yeah. Mikaela, I'm not questioning your decision. I think your decision is rock solid.
I... I'm trying to trying to say and wonder out loud, are you a are you a victim of your... Not even victim's the wrong word. I don't mean it that way. Are are you a a product of your circumstances?
Like, had you not gotten low that time? Had you found... Because you know me. How is it you know me?
Mhmm.
You listen to this podcast?
Yeah. Yeah. Sure.
I do. So you've heard, like, discussions about how to use insulin and things like that. So Yeah. What if you would have found that before you got low and then not gotten super low that time. Do you think you'd be do you think you'd be here still?
Yeah. Because, honestly, I I mean, as I told you, I've read it all. I've read all the books. Also, all the... All those books that, you know, teach you how to handle everything.
Yeah.
And I still believe that the the risk of injecting too much insulin is too high, and it's not worth risking. Because, yes, you can maybe find a solution that works for that specific food, but you... We are never, you know, a 100% sure that it can work the same way every time. And I don't want to run that risk. Yeah.
I believe that small amount of insulin are more manageable, and and that's the the way I want to approach a sore... You know, this strong medication that we are given. Yeah.
No. I completely I completely... Completely... I didn't mean to cut you off. I completely understand.
Yeah. I I
And I'm a woman also, so you have to consider that women also have, you know, hormones and, you know, period. And now I've been through perimenopause and I mean menopause, and that affects even more your, you know, insulin sensitivity and your relationship with insulin. And using a small amount of the insulins allows me to be on the safer side and not risking my life
Menopause, and what it did to insulin26:20
Yeah. No.
I you know, for food.
Listen. I... My life is being impacted by perimenopause right now. I want you to know.
Okay. So...
I mean, probably not the same way hers is, but No. No problem. No. I'm feeling it. So...
It... I mean, it's crazy. I went... I didn't have type one when I was a teenager, and I talked to parents whose kids... Whose girls, you know, are teenagers, and they have all these, you know, hormonal changes, and so these affect insulin.
And I noticed that it's the same with perimenopause because our female hormones are all over the place. And so you wake up one day that you're super high, and the following day, same amount of insulin, same food, same lifestyle, and it's a completely opposite situation.
Gotcha.
It's a roller coaster of, of emotions and management of, you know, of insulin diabetes. And I'm always saying that, I mean, I'm happy that I'm using a small amount of insulin because these sudden and unpredictable changes would be so much harder to manage if I use a larger amount of insulin.
Do you think that you were honeymooning or still are honeymooning by any chance?
No. No? I don't
think so. No. And and
It was just for the first few months, I think, and then I started to increase my insulin needs. So... Yeah.
What what technology do you use?
I wear a Dexcom. Mhmm. And I use MDI. So I use, you know, syringes. So I draw insulin from my syringes with a, I mean, I draw insulin from the pen with a syringes so that I can use, you know, smaller amount, like half units
Yeah.
Here and there, and and it works for me.
And your basal, your your long acting insulin, you shoot it once a day? What kind do you use?
Okay. This is another nice topic. I use Lavamir Mhmm. Because I I still, take it from Italy and then carry, home, every time I go back home, some, some pens to keep going with Lantus since it's out of the market here in The US, and because it works with me. Great.
Yeah.
And I've had very bad experiences with, with Lantus. So I... And also with, Tresiba. So I'm sticking, you know, to the the the quantity I I can get from Italy of Levemir, and I split it into three doses throughout the day.
Levemir, split three ways29:00
Okay.
So in the morning, midday, and before bed.
Total amount? What's the total amount of those three injections?
13.
13? 13 units. Can I ask you how much you weigh?
It's... Oh, wow. One hundred and thirteen pounds.
You're one thirteen. Okay. So you use... Okay. You just said about a unit per per, 10 pounds.
Not that that's a measure. Not that that's a measurement, but right about there. And... Yeah. Okay.
And you do it three times a day. So what do you... How long do you think it lasts in your body, and what's the reasoning behind shooting it, thrice like that?
Okay. These are learned from doctor Bernstein in his book. He was suggesting to to split, eleven million to three because it's the shortest acting, you know, long acting that we we had in the market. And this allows me to adjust the dosage to the moment of the day. So it's higher in the morning because I inject the six point five units when I wake up.
And then it's way less during the day, so it's three units in the afternoon and three and a half before bed. This allows me to have a more stable amount of in... Basal insulin depending on... You know, according to my lifestyle. So I'm more active during the day, and it's less in the evening.
And I tried it just, you know, because I read about it, and I thought it was a good idea. And my endocrinologist at the time said, okay. It's cool. Try. See if it works.
And, honestly, it's been amazing for me. Also, because this allows me to make small adjustments if I need to. Mhmm. Like, a half a unit more or less here and there, without messing too much with, with my, you know, standard, regular, management. So if I need a little bit more extra, you know, insulin when I'm sick or when my hormones are all over the place, I can add that extra half a unit in one of these, you know, three moments I inject, and this helps me balance without big changes.
Yeah. You're you're almost acting like your own algorithm for your needs.
Yes. Right. In a certain sense, yes. Yes. Yes.
Yeah. I was suggested, in fact, to try the pump, but I'm not a fan of having another machine attached to my body, honestly. So I've been, you know So you don't pony.
Yeah. You don't wanna sweat. Well, so do they overlap? So, you know, I mean, Levemir, listen, it's a long time ago that we used Levemir with Arden, but I found it to last, like, in that eighteen hour window maybe. It started to really kinda dissipate for her, so we would shoot it every twelve hours.
And Well So where are you... Are you seeing... Like, are there times it's more aggressive? Like, I... Like, what time...
Tell me the first time you you bolus.
Okay. So I bolus at 06:30AM, so when I wake up.
06:30? Levamir goes in 06:30. Then when's the next time? Yes.
02:30PM.
Okay. So there you go.
And then it's around 11PM, the last one, when I go to bed.
About every
about a bit of overlap
Yeah.
Definitely. But it's on the, you know, the... In the moment when it's less powerful, and and it it it works because it rebalanced the situation.
Okay. That... It's awesome. So about about every eight hours ish. Yeah.
And you have, like, a a fresh load for the morning and the daytime, another kind of fresh load that covers dinner and then another one that kinda covers overnight. Is that how you think of it?
Yes. Yes. Correct.
Okay. If you stopped shooting it, how long until it would be going out of your body? So say you did it morning, afternoon, night, got up in the morning, forgot it again. When would you start to see your blood sugar rise? Right away?
Oh, wow. Oh, wow. It never happened.
You're like you're like, that couldn't happen.
No idea. In... I... It happened to me maybe to forget one time in the morning because I was kinda sleepy. And so around two, I was starting to see numbers going up.
And I said, what's going on? What did they do? And they said, I have checked in Levemir. So, like, when I get close to the, you know, next dose, I noticed a rise.
Okay. About eight about eight hours late. Yeah. But when you're you're late about eight hours, you started to notice it. Okay.
But that's really interesting. So then you're doing that for basil. Now how much how many carbs do you eat at a meal, and how do you cover them?
Okay. I don't have average. You know, after many years with type one, you know, you go by. Okay. Yeah.
I eat that. I I know roughly how much insulin I need for that. So I basically use either half a unit or one unit per mil, and then I use another half a unit or one unit to cover proteins, like, one to two hours later when I start to see a little rise in my CGM. Mhmm. And so I can see the...
Covering protein an hour later34:23
I can catch the the rise for the protein. Okay. So these are roughly the amounts. And so the amount of carbs, it's, like, no more than 10 carbs, 15 carbs per meal Okay. On average.
Very structured, three times a day, or do you snack, or how does that work?
Well, sometimes I snack. But, if I snack, like, with nuts, I don't even need to bolus for that. So there are a few things that I can snack with, and they affect really
Okay.
Mildly my my insulin needs. So mostly nuts. Peanut, almond butter, for example, or, you know, any high kids cookies, they're very low carbs. So if I have one or two, that ain't Okay. But nothing.
Walk me through walk me through a meal. What would you eat for breakfast?
Okay. For breakfast, it's usually the, Egg Life egg wraps. They have the cinnamon flavor ones that I love. And I, like, spread on top of it like almond butter. So it's mostly, you know, proteins and fat.
K. And and I have a good cup of tea.
Keep... Say the cup of?
A cup of tea.
Tea.
I don't drink coffee. Mhmm. It makes me nervous, so I don't eat coffee.
Before I get to... Oh, there's there's more? There's... Look at you. You're No.
No. That's was gonna say that sounds like it. Light. So I wanted to ask you before we jump to lunch because I want... I I wanna hear about every meal.
Talk about your personality a little bit. Are you very type a? Are you... Like, when you said earlier, people said, oh, I tried, but I found it to be too difficult. Or, like, why do you not...
Why do you think you find it so comfortable?
Well, I'm a very organized instructor person. So, I do it also for work because I'm an operations manager. So I like people, you know, to be planned, organized. So having a plan and follow it, it's very much my thing. I don't like to mess around.
And and I like to, you know, observe trends, analyze them, and find the solutions. So I apply this... My mental set to my diabetes management. And, definitely, the way that I am helps with with following this lifestyle because, because it's very easy for me to to follow a plan that I, you know, made for myself, and I see that it works. Yeah.
I work at from home, and so I'm very consistent with myself. I I I don't like to procrastinate. So this helps, definitely with, consistency in following the following the plan in in my diabetes management.
Working from home can be really valuable for stuff like that. I... I've Yes. Somebody said to me from home. Yeah.
Yeah. Somebody said to me, like, well, I don't wanna start a GLP medication. What if I have, like, bathroom issues? And I was like, well, go to the bathroom. And the person's like, well, I don't work at home.
And I was like, oh, you drive to a place. And then you... I said, oh, that makes sense. Yeah. So you have some advantages there.
I I... Okay. And your and your personality leans towards it.
Yes. I... I've always been, you know, when I got sick and I was really miserable mentally, especially, my dad was the most amazing person in my life. He told me, you know, this happened to you for a reason because you have the strength mentally and physically to cope with that.
Oh, your dad believes in you. Yeah. Yeah.
Yes. And I loved it because I was I've always reminded myself that if my dad believes that I can do it, I can do it. If he's... If he thinks that I have, you know, the ability to deal with something as big as this, I can do it. And I've always been motivated by that.
I'm... I've never... I mean, yes, I was depressed at first, but I've always tried to find, you know, the positive that diabetes can bring into your life. And I've learned, so much about this community. I've learned so much about my body, how our body works.
Finding the positive in it38:52
I've improved my lifestyle and the way I look at the lie... Life. I see it as a gift now every day, and these are gifts that, probably I wouldn't have, without diabetes.
Yeah. Say more about that.
I learned.
Yeah. Yeah. You were going to. I didn't need to jump in, apparently. Go ahead.
Tell me more about tell me more about those gifts.
No. It's really... I mean, it's the gift of loving life, literally. And I'm I'm not a religious person, so it sounds even weird coming from my mouth for those who know me because I'm very not into religion. But it it somehow gave me a purpose to be happy with what I have, happy in my life, happy with my successes with the management of this condition, and trying to help the others to face, you know, the...
Their difficulties with the same kind of approach.
Yeah. Well, I guess once you feel the frailty of life, it's easier to appreciate parts of it. Right? Because it feels finite.
Yeah. And whenever, you know, something difficult happens, you have very big shoulders now because you've been through so much, then you say, okay. Okay. I I can do... It's it's a mess, but I can do that.
It gives you a lot of, you know, strength, that I didn't believe I had, honestly. But, when I was diagnosed, I lost the vision for, like, a month. That was shocking. Yes. Because when I started to use insulin, the...
There was imbalance in in my eyes. I I was seeing the eye doctor every day because I was freaking out. And he told me that, you know, the eyes are made... Most of, most of their party, is water, and it's the part that is mostly affected by high glucose levels. So it takes more time for that part of your body to rebalance once it go back to normal numbers.
And so for, like, a month, I could only see shadows.
Oh gosh. That had to be frightening.
But, it was... And I had to inject insulin anyway. So it was like, okay. I was, using my camera to zoom on things. It was it was really crazy.
And after I have experienced that, I said, okay. I can I can I can leave anything now because, mean Yeah? It was not just, you know, the diagnosis and, you know, learning to handle needles and check your numbers frequently or, you know, this burden, but I didn't see for a month.
A month without seeing properly41:35
Hey. Your father, if if he... I don't know if you'll be able to answer this question or not, but if he did not think you could do it, would he have told you? Is that why you took the confidence from him because you knew he wouldn't say it if it wasn't true, or did you just feel like him believing in you was a reason you could believe in yourself?
I... Well, I think that it was the the extra push that I needed. Knowing myself, I'm I'm very stubborn, and I don't like to be not prepared. So I study. I learn.
I practice. I read. I try to, you know, get to reach knowledge of what what I have to deal with. So I was going in that direction. My dad just gave me, you know, the extra push and the, you know, support from, you know, emotional support
Yeah.
That I needed to keep going.
Mikaela, listen to the question, though. I appreciate that. But was he being a cheerleader, or did he really believe in you?
No. He really believed
in you. Yeah.
He does.
And you felt that? Like, you you thought he wouldn't say this to me if it wasn't true?
Yes. Yes. Okay. Definitely. Yes.
Okay. I think
I I... Yeah. My dad doesn't speak much, and when he says something, it means a lot.
I'm exactly the opposite. I'm exactly the opposite. I'm constantly talking. I'm not sure what any of this is worth. Me too.
Me too. That's why I love my dad because when he tells me something... Also, you know, he he criticized something, I do. I know that it comes from, you know, you know, from a person that is very, you know, attentive and pays attention to details. And when he speaks, it's just because he needs to be heard.
Something's important, probably. Yeah.
Yeah.
Hey. I heard you mention another baby a second ago. Did you adopt again, or did you have a baby?
No. No. No. We just adopted one. No.
No.
Oh, I thought I heard you
adopted our son.
I thought you said my boys. You meant your husband and your son.
Yes. Yes.
Okay. I was wondering if you my boys. Was just wondering if you had a pregnancy when when you were No. Type one.
No. I didn't I didn't even consider that, honestly, because... Well, I was very weak at first when I was diagnosed, and I was already, you know, 33. So I was not on the youngest, you know, side of, possible pregnancies. And, we were adopting because, we couldn't get pregnant.
And the only option for me would have been, IVF, and I... My body was not able to to go through that, honestly.
Okay.
And plus, I I honestly didn't want to have a kid and risking to pass diabetes to my kid or my grandchildren.
Yeah. Yeah. That became a concern for you after you were diagnosed.
Yes. I really don't want... I didn't want... Didn't want anyone else to to get it be... Because of me, honestly.
I don't wanna break your heart, but the number of people on here who have type one... Who've had type one diabetes then adopted a baby who later got type one diabetes is more than, like, it's more than, like, three. So I'm not wishing it on me, but, you know... Yeah.
I know. Don't mention it because I'm I'm freaking out right now because my son has a... My son is Hashimoto's, and it was recently diagnosed. And here at Reddy's children, they told us, okay. We can do a blood work that check also if he has, you know, the genes and the risk to develop type one.
And I said, okay. Let's do it. But, honestly, I I I cannot I cannot cope with that.
You didn't you didn't do it, or you didn't look at the results?
Yeah. We we are doing we doing it next week. Okay. So we will figure it out next week. Hope...
He he looks fine. Hopefully, we are on the lucky side.
Yeah.
But I know that, you know, life, life can be unpredictable. We know that. Right?
So far, it has. Yeah. Nothing's happened yet that I've expected. So I guess Yeah.
So... Yeah. That's why I'm saying, okay. Let... Let's do the test.
Let's see what we are dealing with.
Hey.
Yeah. But
I appreciate you answering that for me. I... I'm interested also... I mean, you're, you know, older when you were diagnosed, not old, but older, had been married for a while. It was a scare...
A scary proposition for your new baby. How much did you let your husband into the world of diabetes? Like, what's his... Does he have a deep understanding? Is it...
Is he... Do you keep do you keep him at arm's length? How do you do it?
That's a difficult topic, honestly, because my husband got scared of, my, you know, low blood, glucose episodes, and I had a few, sadly. And he saved me, so he felt very responsible. So he's on the anxiety approach. So he's always anxious when I inject insulin or when I check my numbers. So, I don't share much with him about my numbers because I know that it messes with, his, you know, control, and he's sensitive to that.
Sharing numbers with her husband47:01
So,
at first, I gave him a lot of, you know, documents, information about the type one, readings. But I didn't expect him, you know, to to get into a deep knowledge. So... And at the of the day, I'm independent, alone in my management. He knows how to save me in case of need, but it's a very delicate topic.
I know that he is very, very worried about, especially, hypos.
Mhmm.
And so I try to limit to the bare minimum because I don't want to make him, you know, worry more than he should.
Is he following your Dexcom?
No. He tried. After the last time I had a hypo, I gave him the possibility to follow my numbers. And, like, a month later, I told him, okay. You know, I love you, but that's not a good thing for you.
Because he was calling me anytime he was seeing a narrow going down. And and sometimes, you know, it's because I'm sleeping on my arm, and so I have, you know, I have hypo related to the pressure, or I've just changed my, you know, my sensor, and so, you know, it's crazy at the beginning. Or it's just... You know, the sensor, it says if it goes down, then it goes back up because it's about to die. So there's a lot of reasons.
You know? It was not necessarily every time a crisis. It was never, actually. So I told him, you know, don't think it's healthy for you, for me, for our relationship. You shouldn't be following me.
And so I disconnected him from
Were you
from my next.
Did you feel like he was, like, parenting you? What what did... Yes. What... That's what you didn't like about it?
It felt like you felt like I don't...
Yes. And he was parenting me without, enough knowledge to manage the situation. Oh. So it was creating anxiety on something that shouldn't be, you know, an anxious event because, as I said, all the times that he called me, it it was nothing. It was nothing.
Nothing was happening. So I felt that he was, panicking without any reason.
Without any reason. Mikhail, did you not get any comfort out of it? Just the knowledge that somebody was looking?
Yes.
You did? So you... What you want is someone to help you, but not him. Is that what you're saying?
Well, you know, what I look for...
How old is the kid? Maybe he could do it.
Yeah. No. He's he's... No. My kid, he's amazing, honestly, because he he grew up with a, you know, a type one mom.
He's 12. When I tell him, okay. Nicholas, I'm low. And he say, okay. Sit down, mom.
Don't worry. So he he gives me space without, you know, stressing about it. Because sometimes when you are not feeling well and you're low or high, you don't need, you know, all the noise around you. You don't need somebody asking you constant questions. How do you feel?
What do you wanna do? Do this. Do that. No. That is not what I I need.
I need empathy. So what I'm keep telling everybody is just... I just need empathy because I know what is going on. If I need help, I will ask you. The rest is just, you know, sitting next to me and letting me know that you are here for me if I need you.
And your husband That's it. Your husband's anxiety is what if she needs help and can't ask me all of a sudden or can't
help herself? I I understand his anxiety because, I mean, I scared him, and he's trying to be more, you know, present in a more empathic way. So he's working in that direction. But he was, hurt from what happened in the past. So I totally I totally understand how he feels.
Well It's it's human. You know?
Yeah. Of course. If my experience is any indication, he's in his fifties. He should probably be able to figure this out in the next twenty years or so, I would think. And then, you know, he could probably really start applying it for you, I would imagine.
You know?
Yeah. No. But, I mean, he's he's, he he trusts me. So that's that's the most important thing.
You know, it's funny. I mean, it's it's just language, but, like, you scared him. He trusts me. It's not about you. It's about the unknown part of the diabetes.
You know? But if... I guess it feel... It feels like that to you that it's about you?
Sometimes I feel that he's pointing at me, but I tell him every time. You know? There's... I mean, sometimes, it is what it is because when I had the last hypo, I didn't have any insulin on board, for example. So I told him, I really had no clue what was going on.
Mhmm. Was probably my, you know, perimenopause getting in the way. Sometimes you really don't understand why your numbers are Sure. Behaving in a certain way. You're high, and you say, why?
What did I do wrong? It's always the same kind of, you know, habit and patterns because we become animals of habits as human in general. So I said, oh, I look at the numbers. Said, well, why? But I I learned that it's just...
You know, you just have to go with that and see see the numbers. Okay.
Yeah. Sometimes enough things happen, and you have a different outcome than you normally do. And and by the time you Yeah. By the time you figure it out, it'll be... You know, it's tomorrow.
So... And and something and something different is happening. Yeah. Yes. Interesting.
Very interesting. So your son understands, like... Could your son give you rescue glucagon? Has he been told about that?
I... Well, yeah, I showed it to both of them how it works, and I always carry one with me. Hopefully, we never have to do it with my son, I mean. Yeah. But, yes, I showed them, the...
You know, we opened an old one and saw how it works. And, hopefully, it will not be necessary. Because my husband, the few times that happened, just gave me juice and and, like, liquid sugar, and that helped.
Yeah.
Hey. But, I mean, my goal is not to have this kind of episodes again as you can imagine.
Yeah. Yeah. You're... You and everybody else. When you said you learned about doctor Bernstein's from his book Mhmm.
Is that your community around low carb eating for type one, or do you have an online space that you talk about it that's valuable for you?
Yes. I'm part of the type one greet, Facebook group. Mhmm. And that is my diabetic family.
Yeah.
It's where I go to for any kind of, you know, doubt or or question or for looking for, you know, tips and, I don't know, recipes also if I want to make something. I really... I found my people there. So... And I'm I'm feel...
I feel very, very blessed to have that many people following my same lifestyle, and they're, you know, spread all over the world. So it's it's amazing. Mhmm. And I recently, started to, get in touch with the local community of breakthrough t one d. Mhmm.
I've never looked for in person, you know, gatherings before now. And I don't know. I felt the need to do it, and, and I... Let's see how it goes. I'm taking...
I'm joining the the walk on November 14, and and I... And I'm trying to see if, it's the right fit for me, I mean, locally, you know, to have somebody
Yeah.
Living next door That's nice. With type one.
Well, if you wanna go on a cruise, we're going next July again. So
Oh, nice.
Yeah. A nice boat full of people with type one diabetes.
That's cool.
Yeah. Yeah. No. I I think it'll be interesting for you to get out in the community and meet people in person. I bet you'll like it.
I... You know?
Yeah. I I I mean, I I went to a couple of meetings, and I liked it because the empathy, that you can receive from another type one is incredible. Mhmm. It feels like home even though you barely know this person because we we we share so much already, and it goes beyond, you know, words and and and everything. It really feels like you are...
You're with your people.
Your expectation, online is that you... You've obviously outlined that you've you've found that you have a family and a group of people that really understand how you do things. When other people go into that space and try to learn about, low carb, some of them come back and report being treated pretty aggressively if they... The way they put it as if they descent to the idea or say, well, couldn't I just have this too or a piece or something? Is that not commonplace?
Because to you, you don't explain it that way. So why... I'm trying to figure out why your experience is what yours is and why others can have a different experience. And, what do you think that's about?
Why the arguing pushes people out56:18
I think that it depends, of the situation. I mean, in the community talk one, greet, I've always read about nice people sharing tips and, you know, following the same approach with respect.
Right.
It's a very, very beautiful community. My feeling is probably that those who felt, you know, attacked by type one, you know, type one greeters, is probably, in other situation like, you know, other groups, other, you know, type one groups in the middle of other conversations. You know, online conversations can be so, complex and the the interaction can be so misleading.
Mhmm.
And a lot depends also on how people, you know, communicate between each other.
Yeah. No. Sure.
Because, if a person starts attacking, the low carb approach, the other part might feel the need, you know, to protect and defend that lifestyle that means so much to us. So a lot depends on how the the the communication happens. Of course, if you want to have a slice of pizza, you're free to do it. It's just you're not following a low carb diet. That's it.
So But I don't my in my experience
Yeah.
They're they're amazing. I mean No.
That's why I'm asking you because you're you're clearly having a very positive experience. And I I mean, I run a fairly large community online, and I would tell you that, like, there are people in there that do all numbers of different kinds of management ideas. And we have incredibly low carb people who are in there and people who eat probably all, you know, all the carbs and and everywhere in between and manage MDI and with a pump and with a manual pump and, you know, an AID system. And I don't see them... I don't ever see anyone saying, you're not doing it like me.
You're wrong. Or or saying something as aggressive as, that person is trying to kill their child and mean it literally because they let but you've seen that. Right?
Yeah. Well, you know
Where does where does that, like, level of enthusiasm? Because I'll call it enthusiasm. Where does that level of enthusiasm come from, do you think?
I think that, I mean, I'm an adult with type one. I believe that being a parent of a kid with type one, it's a different business.
Mhmm.
And you feel very much a responsibility of keeping your child alive. And so that is probably what is making the, you know, the conversation more complicate
Mhmm.
And make people say, oh, you're killing your kid doing that way just because that parent feels really Stronger. That is is a strong situation, and it's a delicate matter.
Yeah. So I'm I'm only involved on the on the outside. And my best interpretation of it, and I'll run it past you because you're having such a good positive experience, I'd love to hear what you think of what I was able to come up with. I think that if someone starts their journey with type one and is really flailing and faltering and things are going poorly and having terrible lows or just not living a good life health wise and they can't figure it out, no one's been able to help them. And then suddenly something comes along and and writes that ship for them and and and and, you know, crosses all the t's, dots all the i's, and suddenly they feel safe and confident that that thing becomes religion then.
Right? Like, that thing saved your life. You used that phrase. Oh, yeah? Yeah.
Right. And so, like, that's the only thing I've been able to make sense about it. Like, is that it Yeah. Yeah. Is that it
finds sense. Yeah. Yeah. It makes sense because, with with diabetes, we know that it's so uncertain and so scary sometimes, and, you know, it's constant, you know, thinking. And if you find that way of living that makes you feel safer Yeah.
It beaks... It becomes your safe place.
Right.
Right. You feel safe there, and you say, okay. In all the math of this condition and all the math that I have, I know that this lifestyle, for example, helps me helps me have a happy life. Mhmm. And probably, yes, when this happens, you become very defensive of your approach.
Yeah.
And I found myself discussing with the friends who are saying, oh, come on. Why don't you eat pizza? And I say, no. I mean, I feel okay with this way. This is the way I like to...
I prefer to live my life, and it works for me, and you should respect it. That's it.
Of course.
That's Yeah. Always what I say. But I will never tell somebody who is doing something different, oh, no. You're doing it wrong. I say, okay.
If you can do that... I mean, if you can eat a whole pizza and have, you know, smooth, numbers throughout the night, Wow. You're you're a genius, and good for you. I'm happy for you. It doesn't work for me.
Exactly. That's how I feel about it. Like, whatever works is the best thing. That that's pretty much it.
Happy and we are healthy, I mean, the most healthy possible we can be, it works. I I I I... And I I approach everything in life right now. So I stopped judging people for their life choices because I use the same kind of approach that I'm using for my, you know, food choices for managing diabetes. If this person decides to do something and this person is fine with that, I'm happy for this person because she's happy.
It's her life. It's his life, and it's good for this person to do... To make this choice.
Yeah. I agree. Live and let live. Just do what works for you. Everybody Yeah.
Enjoy themselves. Have a good time. I... Listen. I've I've been over the years on the wrong side.
I I will say this. The aggressiveness that I felt in the past seems to have waned. So I don't know if maybe, like, certain people have maybe come and go out of the space or maybe people's just, you know... I don't know. Maybe the the Internet's changed.
I couldn't even begin to tell you. But I've been aggressively come after before called, an insulin pusher or a carb pusher by somebody. I've seen people be told that they're... They are literally, like, literally, that you're murdering your child by letting them eat carbs. And, like...
And that's some... And then and then later, people are like, well, I don't know why they don't, like, wanna learn more about low carb. Like, you do not make it a very hospitable, like, vibe when people are, like, checking into it at first. You know?
Like Of course.
Yeah. Like, I... Maybe say what you said. Law of small numbers. It really works.
You should give it a shot. And then and then Yeah. And then once... You know, listen. Again, we we...
It's a big group, but I've had tons of low carb people in my group and, and happily, and they're still there. But I've also had some that proselytize so hard that you have to look at them and go, hey. Every question asked, the answer is not doctor Bernstein. Like, you can't... Right?
It's it's it's just not. Like, when someone's like, you know, my kid was at school today and they were running around and they fell and they got a, you know, a knee scraped and then they had go to nurse. It was really okay. They test their blood sugar while it was there. Blah blah blah blah.
Later in the day, they got a little lower. Boom. You should be eating low carb. Like, oh my god. That is not the question at all.
Like, like, you know, like, like, you start you start
Yeah. That is a little bit too much.
Everything becomes that. And then when you point it out, you go, hey. Listen. I like you here. I think you're doing a great thing.
I like that you're spreading the word about low carb. I don't know as much about it. I love being here. But every time you open your mouth, you can't say that. Like, it's it's literally proselytizing.
Like, don't do that. Like, have other things to say sometimes. Be part of the community otherwise. And then they go, well, Scott won't let us talk about it. And I'm like, what?
That is not what I said at all. And then and then they'll run out to their... Somewhere else on the Internet and tell everybody how I'm shutting down the free speech around low carb. I'm like, oh my god. That...
None of that's what happened. But, like, okay. Like, I I don't know. Like, I just... I don't know.
I've never been able to make sense of the aggressive nature when it's aggressive. I also wanna say I know a thousand people who eat low carb who are not aggressive at all, they're very lovely people. But that's the that's the brush you get painted with then. You you know what I mean? And it's and it's a a watch.
It's a disservice, Mikayla.
I believe it's like, you know, everything, like, in politics or in religion. You know? There are the... Those who are... Who who have very extreme opinion, and they're very strong in showing their opinion.
Yeah. And you have it, as I said, in everything, in religions, the extremist take... You know, those who are very, you know, stick to... On following the rules of their religion or, you know, politics. Those extreme, you know, people who have very strong politic...
Political views. Whenever you are very, you know, committed to a belief, you end up getting too... It it becomes too much, especially, as a perception from the others from the outside who are just, you know, listener. You can have your opinion. You don't have to be harsh in sharing your opinion or being so strict in leaving your your ideas.
I have this opinion. So there is a bunch of people who probably believe in type one, you know, low carbs approach strongly because it really helped them and saved them probably or their kid. And they really want to spread this, you know, sensitivity on the topic because it... We have never been considered much as a... As an option until a few years ago.
It's just now that peep... People are starting to say, oh, yeah. Maybe look how it's a good idea. Oh. Before, it was really
Yeah.
Harder to be listened to. And so probably also this, you know, activated this kind of a pushy approach to, you know, being very present in in sharing our perspective.
Okay. I I was I was gonna say, I've heard people talking about low carb since I've been around diabetes, and I I note... I've known people who've done it the entirety of the time. So I mean Yeah.
But if you talk with endocrinologists Oh, until a few years ago, they were saying, like, what? No. No. No. That's that's not absolutely...
That's not the choice, especially with kids. So oftentimes, parents were facing really this very strong opposition to using this lifestyle with a kid. And I believe that this made this very strong opinion. You know?
Yeah. That that that argument the argument around you need carbohydrates to grow. That argument. Yeah. I got you.
Yes. Yes. And that is mostly what the parents of, you know, kid following the low carb diet fight with because there's still this belief. And you can see these kids thriving with the Sure. With the low carb diet.
So, I have this feeling. So that's why I told you, you know, I'm an adult with a low carb diet. Being a parent of a kid with type one, it's a completely different situation. And I believe that also emotionally, it's much harder. And finding a way to, you know, being supported in this low carb approach, it's a it's a fight for them most of the
time. I would I would say... I just wanna point out. Most of the time, I eat fairly low carb. I'm not...
I I wouldn't... If you ask me what my diet was like, I can't say that I'm low carb because I also don't eat low carb constantly.
Mhmm.
But many of my meals over many days of my week are fairly, like, protein heavy or, you know, I mean, I... Yesterday, if I went over what I ate yesterday yesterday, I ate eggs. I had some sort of pork. I had chicken. I had salad, but my salad had croutons in it.
And I think I think at some point, there was, like, a small piece of bread with something else during the day. But I I I didn't count my carbs yesterday, but if I did, gosh, if I did, I'd probably say I had fewer than 60 carbs yesterday. Is that low carb? I don't think it is for some people, but I would imagine for
Barbara, low carb... Strict low carb is 30 a day. Mhmm. I have to be honest. I am not strict...
That strict anymore.
Oh, we're gonna burn your house down. They're coming. Yeah. No. Just kidding.
I'm teasing.
No. No. I think that... I mean, when I first started, I was very strict, also because I had to learn to manage diabetes. And so it was the best way for me, you know, to have a system, a number, and an approach.
You know? It was a very methodical. Then, you know, with time, you get used to to diabetes, and, you start to learn how your body reacts to food because you know very well that every food have a different, you know, effect on your body, and everybody is different. So, I mean, long beans for me are are terrible. They skyrocketed my my glucose levels, And for most of people, it doesn't happen.
So we we start to learn, you know, the trend, you know, the... How our body works. And and so after that, I started to pay less attention on counting the, you know, a very strict number of carbs and more, you know, the food that I know that works for my body, being a low carb. So I don't have pasta for lunch, for example. I will never have it probably.
But if I'm cooking pasta for my son and I want to have a bite, I can I can do that because, I can I can manage it?
Yeah.
That's the way I I approach now, my low carb lifestyle because it's a life. So, of course, you don't want to feel yourself, you know, constrained too much. Yeah. You have to find what works for you.
I appreciate this conversation very much. I I have one last question before I ask you if you have anything else. But I I really appreciate the conversation. I can't believe the timing of it because I'm being serious with you. The person who I recorded with yesterday was like, oh my god.
Those low carb people, we tried it, they ran us out. And and and and also they said... She also said it was hard for her to adapt into her lifestyle, and she talked about all the things that she thought it was doing that weren't positive for for her family. And then no lie, you jump on, you're like, I'm really low carb. I was like, oh, this is what great, like, timing this is.
I think I'm gonna put them out back to back. I'm gonna call it, like, I don't know, the pros and cons of low carb. Your your episode will be called pro and hers will be called con maybe, and I'll put them... I'll literally put them out at the same time so people can hear them. You know?
And I appreciate the conversation because I think I'm... I have been in the past unfairly labeled. And, and at the same time, I've heard stories that curl my toes. I I know a story firsthand from the person it happened to. I wouldn't even say on this recording, and and it's horrifying.
And so I... I'd be happy to tell you about it when we hit, stop. But Okay. But it's one of those things where, like, when you hear it, you go, okay. It...
I don't know. It's like it's like seeing a crazy person on the side of the road, and you go, okay. Well, I know that's a thing I have to stay away from. And and it's funny because I think that the people who who most fervently want the message to get out there are maybe sometimes the ones who most fervently stop the message from getting out because of how they deliver it. And I am personally saddened by that with...
And those people would not believe that because I think eating lower carb is a completely thoughtful and viable way to manage your type one diabetes. And and yet I can't get too involved in it because no matter how I talk about it, they're like, he doesn't really think that. Or they they... They'll read into something and, you know, etcetera. But my my core belief around diabetes is settings, understanding the timing and amount of your insulin, understanding the impact of the food that your body has, the the the food has on your body.
And that goes for... It doesn't matter if you're eating 20 carbs a day or 40 or 60 or 300. Those rules, I think you should learn those rules and then apply them to your lifestyle, which leads me to my last question. Yeah. If I sat you down at a table right now and gave you a 90 carb meal, would you know how to bowl us for it?
Could she bolus for a ninety carb meal?1:13:41
Woah. Do I really have to eat it?
Yeah. If if that if that happened, would you be able to cover it with insulin?
Yeah. Well, I should look at the meal, what is it inside. So I should do a little bit of studying of the the meal and how it was cooked. I believe I will be able... I will be scared to death, honestly.
But, yes. Because, I mean, after over a decade with diabetes, I know roughly how my body works, so I I could manage it.
You could manage it.
That's awesome. Not sure if I will be happy to do it, though.
Well, I don't imagine you'd be happy in my little pretend scenario. I just wanna know if you would be able to do it without getting high or low. Without having a a giant spike or a bad low later, you think you could manage through it?
Yeah. Yeah. Definitely. I would probably, you know, under dose to be on the safe side of the situation and then make adjustment afterwards rather than, you know, crashing because I've used too much insulin.
Going for it.
Yeah. But, that that would be the way that I would approach it. But to be completely honest, when we go to In N Out, I eat a lot of my son's fries because fries are something I really cannot control myself with, and it's definitely not low carb.
That's the one that gets you french fries. That's awesome.
So I I I I eat, like, one third of these, hobbies fries because, because, I mean, you you need to live your life. Right? We need to be happy. We need to live our life. So a fry here and there won't kill me, and I will I will manage it.
So, but it will be fun to see if I can cope with a 90 carbs.
I only ask... I I ask for two reasons because a lot of people say, I'm super worried even though my child's low carb. Like, I just don't feel like when they leave for college, they're gonna be able to stay low carb. And then I also don't think that they know how to manage if they're not low carb. That's, like, that's one of the big worries that I hear from people.
Also, I've I've had direct conversations with people who are low carb who would tell me, like, you know, I I went out to dinner and then, I don't know, I had a drink that I didn't realize had carbs in it or something, and I had to go home because I was that flummoxed by what happened. And that to me sounds unfortunate, but that's why I was asking you how you would feel.
No. Honestly honestly, I don't I don't live, me being locked up that way. I mean, I know my body. I know my friend. I pay attention to what I order.
So I tend to order, when I go out, simple stuff that I can, you know, manage easily or ask adjustments. So always, you know, dressing on the side. I always ask what they use for, you know, cooking or things like that. So I ask questions. And and then I I generally try to undercover.
So I... I'd rather go a little bit higher Mhmm. If I'm not sure a 100% what I... What it was inside the meal.
Okay.
But, I've never had to go home because, because of food and mess with, with my
Something like that.
With my group of lovers. No. No.
Well, No. Mikaela,
I It's a matter of, you know, finding a way that works for you. That's my my approach.
Yeah. No. It sounds it sounds rock solid to me. I really appreciate you doing this. I wanna make sure I asked you everything you wanted to get out.
Is there anything we missed or should go back over?
I... There's something that I... It's dear to my heart that I want to share with you. Please. And it's related to lavamere.
Because as you might know, there's a there's a a nonprofit that is really fighting for us to try to have Levemir being produced again here in The US. Of course, not by the same company, but someone else. So Allison, she's doing a a great job trying to give back to us Levenmir. And in the meantime, I'm surviving with my vials I'm taking here from Italy. Mhmm.
But I really I really want to, you know, to give visibility to this to this project because she's working and she's fighting for the entire community, local there and not
Let me...
For Levenir.
Let me help you. Let me let me help you. If you wanna learn more in episode 1,652, it's called Save Levemir. That's Allison Smart from the Alliance to Protect Insulin Choice. Yes.
And she's out there in DC trying to get you Levemir back, and she's been working very hard.
I know. Allison's been on the show.... Contact with her. Yes. I'm in contact with her.
I've helped her with another interview, for example. I really appreciate what she's doing because
Me too.
She's fighting so hard for the kids who would need Levenmir, for the pregnant women who need Levenmir, for those like me who work better with Levenmir because the other, you know, long acting insulin don't work for my body. And she is amazing, and everybody should support her Yeah. Her work.
If you like her on 1652, go listen to her again on 1798. It's called Is Alison Saving Love, Amir. So... Yeah. Yeah.
Happy. I'm I'm an I'm an ally, Mikaela. You understand?
I know. I know. But it's important to keep talking about it. Right. Talking.
Yeah.
I appreciate that very much. Okay. Well, hold on one second, and I'll tell you the horrifying story. Okay.
Oh, yeah.
Thank you for doing this.
No problem. Thanks to you.
Yep. Heck of an episode today, wouldn't you say? Let's thank Dexcom and the Omnipod five for sponsoring. That's right, my friends. We were sponsored today by the Dexcom g seven.
Dexcom.com/juicebox. Head over there right now. Look into that fifteen day Dexcom g seven. Fifteen days is a long time. It's like half a month.
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You do. By any chance, have you tried the small sip series? It's curated takeaways from the juice box podcast voted on by listeners as the most helpful insights for managing their diabetes. These bite sized pieces of wisdom cover essential topics like insulin timing, carb management, and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine. Take a deep dive, take a sip, and discover what our community finds most valuable on the journey to better diabetes management.
For more information on small sips, go to juiceboxpodcast.com and then go... Oh, actually, we changed the website. Let me see. Go to juiceboxpodcast.com. And from there, there's these two little lines on the right side top.
That's the menu. Then click that, then click series, then there's pro... There's small steps right there, pro tips top, bold beginnings, bold... Bolus four, s... There's a lot of them there.
There's actually a little search there too. Could you just type small sips into the search? Oh, wow. That search works great. Look at that.
And then you could go right to, like, all results for small sips. Oh, and that takes you to the FAQ. You should check out the FAQ page too. I think that's juiceboxpodcast.com/jbfaq. Seriously, that thing's amazing.
Actually, the whole website is. I mean, have you, like, seen it? You should you should go check out the website. The website rocks. It is a potpourri, a never ending cornucopia of support for you and your diabetes journey.
That's right. It really is. What else we got over here? Oh, I don't like the way that works. I'm gonna fix that.
Note to self. Change the change the masthead on the frequently asked questions page. Yeah. I don't like that. Fix that.
Oh, Claude. Oh, hell. I forgot to say thank you. Thank you so much for listening. I'll be back again very, very soon.
What is that noise? Stop it. Stop. Can you hear that? My chameleon squeaking.
Are you squeaking? What are you rubbing the branch against the... Don't tell people I have reptiles. They'll think I'm weird. Thanks so much for listening.
I'll be back very soon with another episode of the Juice Box podcast. Look at me. Get all deep in there with another episode of the Juice Box podcast. You can hear it. What was that?
Oh, I'm getting alarms and alerts on my phone. I was gonna get real deep and tell you about the Juice Box podcast.
Read the full disclaimer
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#1982 Postcode Lottery
Postcode Lottery
Monika is in the UK. Her daughter was diagnosed at six, and whether she left the hospital with a CGM came down to which hospital she happened to be in. She bought one herself.
Jump to a moment
- She caught it herself, and nearly talked herself out of it. Monika noticed her six-year-old asking for more juice at dinner, then connected the thirst to the bathroom trips. A first aid course was where she'd heard diabetes mentioned. Offered a blood test three weeks out, she decided she couldn't wait — and spent the drive to hospital convinced she was a paranoid mother who'd be sent home.
- The hospital staff varied enormously, and it wasn't about age. She describes nurses who looked confused about dosing and a doctor who simply listened, and concludes it came down to training and experience rather than seniority. A night nurse swapped out the finger pricker she'd been given for a better one and made an outsized difference at exactly the right moment.
- Whether you leave with a CGM depends on where you live. Her hospital had no budget allocated for sending children home with sensors, while families under other trusts got them immediately. The nurse told her not to buy one — then, the next day, said that if it were her own child she'd get one straight away. Monika's read is that the nurse had to give the first answer; Scott's is that it's worth asking how many decisions are being made by budgets rather than clinicians.
- She paid out of pocket, and it changed their trajectory. Because they were self-funding, her daughter ended up among the first in the UK to move to a newer system. She's glad the local hospital now sends children home with a sensor as a minimum — it just wasn't true when she needed it.
- It hit her once everything was safe. She sat in a school car park for weeks while her daughter did short days, and only after everything was in place did the weight land. A consultant arranged a psychologist for her, not her daughter. Near the end she describes her daughter saying she wished her mother had diabetes for one day — and the painful site change that same week that made her wonder how much of it her daughter already sees.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed.
- Mental wellness series with Erika Forsyth — For the part Monika describes — when it lands on the parent after everyone else is safe.
- Juicebox Podcast Facebook group — The private community, free to join.
Every word of the conversation
Hello, friends, and welcome back to the juice box podcast. If you don't love today's episode, you can have your money back. You should not, in any way, shape, or form, take anything you hear on the juice box podcast. As medical advice, I'm talking about medical advice, regular advice, any kind of advice. This is a podcast.
Cold open & sponsors0:24
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 cannot stress that enough. Hey. I've been asking you for a couple of weeks to take the survey at t1dexchange.org/juicebox, and I've been saying you have to be a US resident, have type one diabetes, be 18 or older, but you can also be the parent of a child with type one and take the survey.
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Hello. My name is Monica. I am based in The UK, just outside of London. I have one daughter who is 11 years old right now, and she was diagnosed with type one diabetes at the age of six. So I'm here to speak about our, experiences and the journey that we've been on.
Welcome. Thank you for coming on and doing this. What time is it where you are? I always... Are you, like, three in the afternoon, something like that?
02:00. 02:00. Two in the afternoon. Mhmm.
Not bad for me, because I don't pay attention to that stuff. So, I guess...
I did check a few times to make sure that I did not confuse the hour one way or the other. Well, thank went on to Google to say, what time is a BST? Agree.
I really appreciate that because let me tell you, Australians and New Zealanders mess this up all the time. So, they're always like... I'll send a note. I'm like, hey. We're supposed to be recording right now.
They'll always respond back. No. That's tomorrow. And I went, well, it's not. It's right now.
So there's always confusion. But thank you very much for for staying on top of it. So your daughter your daughter was diagnosed five years ago. You have just one child?
Five years, and the first medal3:32
I have got just the one, and, yes, she has been diagnosed, five years ago. In fact, it was in May 2021.
Okay. Wow. June, July, August. It's over five years.
Over five years. Yes. We do mark the, some people might, call it diversaries, the anniversaries, if you like, of diagnosis. I don't make a big party out of it. I've seen people with balloons and bunting and all sorts.
We don't go to that level, but we do market in terms of maybe we'll go out together as a family. But yes, we do that every year. And this year, in fact, there is this organization, I can't remember who does it, but they do these medal awards for the type one journey, and five years is the first medal that you can get. Mhmm. And, yeah.
So she's received her first medal for for for being type one strong for so many years.
Was it from children with diabetes?
It was indeed.
Yeah. Yeah. Sure enough. Okay. Yeah.
I think that used to be... If... I'm gonna get this wrong. I think it used to be one of the pharma companies, maybe Lilly, that used to do the the five ten
Mhmm.
Etcetera. And I think they combined the the process up with two diabetes a number of years ago now. So that's... And you knew about that there. So how did you find out about that?
I am sure I have heard somebody say it in, on the podcast in one of the episodes. Because we're based in The UK, I have to do a little bit more research because I I might be totally incorrect, but my understanding is that in The US, you you can just apply and you get it. For people outside of The US, you have to pay postage, and there's a little bit of a form that you need to fill in, so a little bit more detail. But it was really easy. I just the only thing I had to figure out ready was postage, and I received it within a few weeks.
So so it was very straightforward, but I... I'm sure I have heard about it, on the podcast.
Oh, how long have you been listening to Scott's Little Podcast?
Five years.
Oh, have you really?
Yeah. Absolutely. So, in fact, that is one of the points that I wrote down that I wanted to speak about. It plays on from the diagnosis story. So maybe I just start with that from diagnosis and then how I got onto the podcast.
Go ahead. That sounds good.
I
love that. Go ahead.
Okay. So in May... End of April twenty one, it was my daughter's sixth birthday. And then it just happens to be that the following week, literally seven days apart, is my birthday. So we had two birthdays.
First, my daughter's and then my birthday. And literally the day or two days after my birthday, we had dinner as we do every day. But at that specific dinner, my daughter ate her food and she had some juice with dinner, which at the time I was otherwise aware of what was happening. So she drank the whole juice nearly straight away with her food. And that was very unusual for her because typically when she was having food, I would always give her a drink as well, whether it was water or juice or anything else.
The juice she wanted more of6:57
But I had to literally stand next to her to make sure that she would finish that drink. Whereas this day after the birthdays, she drank the whole juice and straightaway asked, can she have more because she's just so thirsty? So I don't think much about it. I just went to the fridge and got some... I think it was actually another juice that I got for her.
And straight away she drank it again. And then she says, can I have more? And I said, well, if you're so thirsty, really, you should be drinking water. And so I don't know what really made me say that, but I went and got some water for her. So that was really the start of when I realized that there was something different going on, something was happening in the background.
And obviously to myself, I'm thinking, oh, yeah, she must be so thirsty because we just had these both... It was these two birthdays, really. And then I thought, well, this is just ridiculous because even... I mean, not that we had massive parties or anything, but maybe there were some crisps or something salty. I thought, oh, she must be very thirsty because of that, which obviously was not the case.
But then the following day, it must have been the Wednesday, she had school. And then straight after school, she would go to cheerleading practice. And in that practice session, it was a very difficult day. Alichi, she loved cheerleading, but that day, Alichi had to drag her. She was refusing to go.
She did not want to go, and one of the coaches just took her on. So she completed the training session. She got to the car, and she was really angry. And she wanted water. And I said, well, it just happened to be actually that week I did not take extra water.
I always had extra water with me for cheerleading practice. But that one day, I did not. And I said, look, I do not have extra water. We just need to get home, and you can have some water then. And she was just so upset and crying.
And in the end, she just fell asleep in the car on the way back home.
I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually for a number of years now, because that's how long we've been using US Med. Usmed.com/juicebox or call (888) 721-1514. US Med is the number one distributor for Freestyle Libre systems nationwide.
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So that was the Wednesday. So she's already drinking more. And during the night, she's waking up because she's thirsty, and she's going to the toilet more. And I'm just in my head thinking, well, she must be going to the toilet more because she's drinking more, so she just needs to use the toilet more frequently.
Yeah. Right.
But I was just not
Buying that?
Happy. I just knew that there was something in the background. Sorry, Scott.
No. You just weren't buying that. It didn't make sense to you.
Absolutely. So I started, I mean, it also happens to be the fact that I... I was a teenager, I myself was very interested in first aid, and I was heavily involved in local Red Cross groups. And we used to do a lot of outdoor first aid practice and training. And we had all these educational sessions around first aid and we did paediatric first aid.
So all sorts of training that you can imagine. And because of that, diabetes was mentioned every now and then as they do in first aid courses. It's more of a mention more than anything else. But the symptoms of, for example, being thirsty thirsty and the anger and things like that, they started lining up for me. And I then went into Google to double check.
And I was like, no, no, no. Surely I'm a paranoid mother. I'm just reading too much into it. I just must know too much. And no one else would even bother with it or think about it more.
But the moment I get something in my head, I I need to know one way or another that, you know, this is always not the case. So I called our GP that same day. I think it was on the Wednesday. I called and I said, look, my daughter's drinking a lot, and I just want to make sure that she's okay. And as it happens, it was still the time of COVID, so it wasn't as easy to have an appointment with the GP, at least here in The UK.
A three-week wait she wouldn't take11:55
So they said I can have a tele appointment, so I did. And the doctor on the other side said, oh, she might have a kidney infection or maybe it's a UTI, so we can do some bloods and maybe she needs a kidney scan. And I said, okay, so we're going to do the bloods. When can we do them? Thinking, you know, maybe the same day.
And the answer that I got was, oh, well, you can go in two, three weeks. When you go to do the kidney scan, you can do the bloods then. So I was like, Oh, okay, thank you very much. And because I knew that if it was diabetes, then it could be life threatening, I thought, Well, I can't be waiting three weeks for this blood test. So instead, I think the following day I called another doctor, and they actually, no, I know what it was.
We, through work, we have medical insurance. So we called that medical insurance company, and we booked an appointment in to to go through the symptoms and and see what it is that we can do to help our daughter. And we booked that in. We got an email confirmation to say that the appointment is in. But then I think it was midnight or even 2AM, some crazy hour, really, we got a text message from the company to say, this is urgent.
You need to go to or you need to be seen in person, something like that.
Okay.
And that way, we even got to the Friday with all of the trying to arrange appointments in the middle of COVID arrangements that we still had. Yeah. We got to the Friday, and we're still drinking. We're still waking up at night. I have not noticed any other signs apart from that.
These were the only signs that were visible to me. So I'm still thinking it's just in my head. I just need to clarify and make sure that she is okay. But it just happened to be that on that Friday, we friends of ours, it was his dad's funeral, and we promised that we would look after his or their daughter. In fact, I even went to their school, picked her up.
We had all these arrangements in place with photo evidence that I can pick the daughter up. And I did that, and I said, look, it's just in my head. I'm not going to rush to emergency. We are going to look after the daughter. Our daughter had swimming that same Friday, so we went there.
On the way back, we go to McDonald's. We get a big milkshake as well for the girls, as you do. And then the... And our friends came back in the evening, collected their daughter. And it just happened to be that the following day, we were going to have...
Well, you might hear from my accent. I do have a South African accent. Our friends are South African as well. We were going to have a braai, which is like a barbecue, basically.
Okay.
And I said, yeah. That's great. We will see you the following day. It was going to be in the afternoon. But I did say, I just need to go to ER with our daughter to to make sure that she's okay.
I just want some blood tests, and we will see you in the afternoon.
Monica, Kim, let me ask you a question. So you've you've spent a lot of time through, like, a short... Like, a lot of time in your story in a short amount of time in your life telling yourself this isn't a thing. It's not a thing. We're gonna keep doing what we're doing.
What changes in your head that makes you say, I am actually gonna take her? The thing you saw did, was it timed? Do know what I mean?
Yes. I think it was that in my head, I knew that it could be life threatening if it was type one diabetes. And I just could not forget about that. I just had it at the back of my mind. And the other thing was, if it was type one and I did not take her, I just I'm that type of person, not only in this situation, but also in other situations.
I keep on reminding myself, if it was or wasn't the thing that I had in my head, would I ever forgive myself? So I think that is what really pushed me in the end. Was... I knew I had to do it because if I did not, I knew it would be at the back of my mind forever, basically. So that is really what pushed me in the end.
It was more the making or satisfying myself more than anything else. Because at this point, I'm still thinking, well, I'm just being paranoid. I'm just being a paranoid mother, and I'm sure she's fine. I'm just reading too much into this. So it was just that confirmation more than anything else.
Thank you.
All right. So, yeah, so we get to A and E, as we call it in The UK. The following morning, my husband dropped us off and my daughter is holding my hand and she is skipping into A and E. And she turns around to me and says, So why are we going to hospital? So I said, Well, you are drinking a lot recently and I just want to make sure that everything is okay.
And I mean, obviously, did mention this before to her, but she was only six at the time, so she was asking these questions because she didn't really understand what was wrong. She didn't even if you, for example, break your arm, you know you need help straight away, whereas this was just in the background, and she didn't really understand even why she was going to hospital.
Sure.
So we get to ANA, and the way it works here, it's probably quite a similar setup really all over the world. You have triage nurses, and they start with some basic assessments. And then depending on what it is, you might be first in queue or last in queue or somewhere in between, or they might send you for x rays and so on and so forth. So I get to the reception desk and I say, this is what is happening. I think my daughter might have type one diabetes, I don't know, but I want to make sure that she's okay.
And the reception nurses, I must say, genuinely reacted as if I was just making this up because they were rolling their eyes. And I said, look, I really hope that I am wrong. I really want to be proven wrong, but I also need to make sure that it is not the case that she has type one. So in the end, they take me through and they also say, well, why can't you just go to your own GP? I said, well, I tried, I tried twice, and they were just telling me it's a kidney infection and we can go for a kidney scan in two weeks' time.
“I really want to be proven wrong”18:46
So in the end, they did all the paperwork and they called us through to this Assessment Room.
Mhmm.
And there there was one nurse that did... I mean, I knew that they had to do a finger finger check, but a blood glucose check. So she was doing that, but I knew nothing about numbers or anything. You know, when I saw a number, I had no idea whether that's good or bad or normal or out of range. I had no idea.
So a number comes up as 24. I think I took the calculation somewhere. So that is four thirty two in some other countries. So that was the level. But I didn't know much.
It was 24. It could have been anything really. And then she says, okay, I just need to do another check. And I already had no idea what she was doing. In hindsight, now I know she was doing ketone checks.
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That's visit.twist.com/juicebox. Twist has two i's.
And there was a number. I cannot remember what it was. Maybe three, maybe four, thereabout. And... Oh, sorry.
Got something. Sorry. I... Can you still hear me?
Yeah. You blurred out for a second, but you're back. Don't worry.
Oh, sorry. Sorry. I I don't know what that was all about because there's some message appeared. Okay. So where was I?
She's checking ketones. So she was doing... Mhmm. She was doing the ketone check. There was, again, a number, which meant absolutely nothing to me.
And then she finished that second check, and she looks at me. I am sitting next to my daughter, and she just said, well done, mum. And that is when literally my world collapsed because I knew that she was confirming at this stage that it was type one diabetes, and also in a way that it was picked up so early in terms of she was not in DKA. I mean, as I said, she was skipping. And they kept on asking her, did she lose weight?
The moment her world collapsed22:40
And did she do this and that? And I just did not understand why they were asking me all these questions. And I said, she's still wearing the same clothes. I did not realize any weight loss or anything. So in the end, they said that it was just very early that we went into hospital and had her diagnosed, which in hindsight was a good thing in terms of we avoided DKA.
But obviously, she was... My daughter was hospitalized straight away, and we... That was a Saturday morning. So obviously, we did not go to the barbecue that day. And we stayed at hospital until the following Friday.
The Friday, so about seven days.
What was the phrase she used that told you that... What was going on? When she said...
So she only said, well done, mom.
Oh, okay. Because she... I got you. Because you come in there saying she might have type one and they they say, no. There's no...
She doesn't have type one. She does a couple of tests, looks at you and says, well, but she... That didn't feel well done, did
it? Absolutely. Yeah. Yeah. My world has collapsed at that point.
So so, yeah, it absolutely was under well done for me. But I also felt that sudden guilt because obviously my daughter is skipping into hospital and she, in her head, we were just going to do a test and we're going to that barbecue in the afternoon. And I just felt so guilty. And I think that also in my head, I wasn't accepting that scenario that actually that is what is actually happening and we will be staying at a hospital. I genuinely thought that I was being paranoid and reading too much into this, and they are just going to label me as a paranoid mother, and they will say, go and enjoy your weekend, which obviously was not the case.
So the guilt was also around the fact that I felt that I should have prepared my daughter for the possibility of staying. So it was all so sudden for her, in fact, for for me as well, for for my partner as well. So so, yeah, so I I felt really bad about that, and that week was heavy.
I was gonna say, so is that is that more of a feeling or a reality? Did it actually translate into a problem, or was it just something you felt badly about?
I think it was just a feeling because, ultimately... I mean, my daughter, she said that she really enjoyed the stay there because there was a play team that would come three times a day and come up with different games and activities and coloring sessions. And she was fed three times a day and snacks in between and all of that. So she said that actually she enjoyed the stay. Obviously, she didn't understand the reality of the...
Or the weight of it all and what was to come. But, you know, just in the child's head for her, it was a great week.
It's kinda nice, isn't it? Isn't that nice, though? I mean, as nice as that could be?
Absolutely. Yeah. And kids are just so resilient, and I think it was just much easier for her to accept what was happening at the time than it was for me. I really, really struggled. So so, yes, it was, you know, that heavy load.
And I I believe that it was in my head as well, you know, that guilt and not being prepared for what was to come.
Well, what was to come? So, I mean, we all know how it goes, but how how is it different from your your expectations? So you have an uneducated expectation in the beginning. You you kinda settle in with the idea. They start teaching you things, etcetera.
You have... I mean, I know for me leaving that hospital as overwhelmed as I was. And and even though I was taking so much new information with me, there was no real way for me to fully appreciate what was about to happen or what continues to happen twenty years later. Do you know what I mean? So
Absolutely. Yeah. Absolutely. And I fully agree. I had no idea and nor would I have had idea unless somebody in the family had it, then I would have had no idea what was to come.
I think that also at a hospital, the part that strangely enough, for me, biggest part was, or the most difficult part was giving MDI injections. And I don't know why, because was I knew that she needed insulin to live. And I know it's a tiny needle. And in fact, she was doing the MDI injections herself. And I myself, I work in science.
I work in the laboratory as well. So the technical side of things was absolutely not a problem. It was just that mental aspect of, right, this is what we're doing until the rest of our lives, and I need to be injecting my child five times a day as a minimum. And all of that, that was really, really heavy. Also, the other aspect that really was, I mean, again, it was needed.
Injecting your child five times a day27:50
But at the time, I just felt so sorry for my daughter. It was the finger pricking every two hours or whatever the hospital was doing as a schedule. And again, in my head, was the other aspect that comes into this is that unfortunately not hospital staff understand type one. And we know this really well also from the podcast, that you can't expect every single nurse and every single doctor to understand type one through and through. So one of the nurses that was what I then realized at the time wasn't fully educated in type one, she said, Oh, don't worry, we're doing the finger checks only now at hospital because we need to get her numbers down.
And then once she's settled, you'll be all good. And I think I was clinging to that hope so much that I thought that that was going to happen. I did not realize that, oh, actually, we are now doing finger checks forever, basically. Well, definitely at the time with the technology that we had, I should say. And yes, so that was also heavy, the need to be doing those finger checks and the MDI and just the whole management side of things.
So yes. But, anyway, I mean, I'll I'll go back to what I said. Children are just so resilient, and my daughter was exactly that. She just did what she had to do. If we needed a finger check, there was no problem.
If we needed MDI, she would just go for it or do it herself. But then also, I am a very black and white person. I like to there's no gray or nothing in between for me. So I like to know exactly what we're doing, how we're doing it, why we're doing this, and so on and so forth. But then there was confusion.
So one nurse would say one thing to me, and then someone else would come and say something different. And then I can see the talk between nurses as to, oh, actually, how much insulin are we giving her? And all of that. It was just not giving me comfort in terms of, you know, you go to a hospital and you trust the medical staff. And obviously I did.
But one nurse said to me at the time, and that was also very there were actually two nurses that made a huge impact. One said to me that because I was in tears in the corridor, and she said, look, and I said to her, it's really so heavy. I just don't know what my daughter's future is going to be like. I just can't see a light in the tunnel over here. And she said, look, there is no point wondering about what she'll be doing with type one when she's in her 20s because we need to figure out the nearest future first.
And she said, type one or not type one, it's the case for every parent. It is obviously, we have got these dreams of what their futures will look like. But ultimately, we just need to take it one step at a time. And that is what I did try to do. Said, Okay, I need to do it one step at a time.
Let's not worry about her 20s or 30s or 50s. Let's figure out today. Let's figure out the next week. Let's figure out the next month and take it step by step. And that guidance really has helped me over the five years that we are now into our type one.
The night nurse who changed things31:10
Another one was there was this night duty nurse who came in the first night. And obviously, I can't really sleep because I am going through everything in my head. My daughter is asleep, but they had to do these checks every two hours, I think it was throughout the night. And she came in. It was a new nurse.
I said, well, hello. And she said, I am here to speak to you as a type one mom as well. And she made such a huge difference to me because she said, oh, no, this finger pricker, now we're not using this one. This is horrible. Nobody wants to use this.
So she went and found one that was actually nicer to the skin. Then she would speak from an aspect of practical life. So instead of sticking with that schedule that was so rigid for all the other nurses, she was saying, look, we need to be practical about this, and we need to do this and that and whatever it was. Those were the two nurses that I really valued during our stay. And obviously, we also had, during the days, we had our education with the diabetes team, and they guided me a lot as well.
So yeah.
So would you say that the people who were disagreeing or not being able to understand how much insulin they're supposed to do, looking confused, were they younger? Did the person who gave you comfort... Were... Did they just seem like they had more experience? Was there something, or did they just know more and you finally got to a person who understood it better?
That is a good question. So I don't think it is to do with age. Just thinking about the staff we had there. And also since our diagnosis, we had one hospitalization, which is a different story. But putting these two experiences into or combining these two experiences, I would say that it is not necessarily an age thing.
A lot of it is down to the actual staff knowing, living, understanding type one. But also with regards to doctors, for example, I realise that there are some doctors that just go by the book and that is it. There's no other alternative. Meanwhile, in the single hospitalization that we had afterwards, there was one doctor who just listened. And when they listen, they pay attention to what we as parents are saying.
And you just have to advocate for your child, which I, at the time of diagnosis, I had no idea about. So... Yeah. So I think it's not an age thing. I would say it's probably down to to the training of the staff and the experiences of the staff more than anything else.
Yeah. Was just listening to... I'm I'm I'm older, Monica. So I've been listening to, you know, when do people retire or how much money do they feel like they need when they're retiring, all this stuff. It's not it's not...
None of it's fun. But one of the, one of the people whose content I was listening to said that it's been proven that people will like their financial advisers better if they don't talk as much, which is crazy. Right? Because you're going to somebody to get their their wisdom, hopefully. Right?
But people report being happier with that person if the person... If that if that adviser lets them talk even though they have no idea what they're talking about. So people just want to feel heard is what I got out of that. Do do you know what I mean?
That's crazy, isn't it?
Yeah. Yeah. Yeah.
I was...... Does make sense.
Yeah. Yeah. It... It's... I I come to you and I'm like, I don't know what to do with...
You know, how do I save money? And then I and then I talk. That doesn't make... But I thought, oh, that's really kinda telling, isn't it? That it's
Sounds more like a psychologist session, really, doesn't it?
Well, yeah, this this one guy I was listening to, he does... He did seem to... I mean, listen. If you're not old enough, you're not gonna really understand this. But, you know, most of us don't have enough money to feel comfortable as as retired.
I know I don't. And the idea that we all think we need more than we actually do, and we all have these, like, ideas about what we're gonna do in retirement. And all the data coming back basically says, you're not gonna do the things you think you're gonna do. You're not gonna need as much money as you think you're gonna need, like, all that stuff. And even though you hear somebody say that to you, even though my neighbor who's in his seventies, said, you know, we saved what we thought was, you know, not nearly enough money, and we were really nervous when we retired.
And I said, but how's it going? And he's like, we don't even touch the money we saved. And I thought, oh, okay. And then he said that to me. It didn't change how I felt at all.
I thought, well, that can't be true. It must just be him. So, I mean, you know what I mean? Like, we're not a bunch of... We're not running around with millions of dollars or anything like that, but, like, he was able to put a modest amount of money together.
He was a 100% sure it wasn't gonna be enough, and he hasn't touched it because he gets Social Security. And he found that his needs are pretty minimal, and he owns most of the things that he wants and needs. He's not... So whatever he was imagining when he was 40 or 50 about his jet setting lifestyle or, you know, I guess, the cars he was gonna need or whatever, he just realized, like, that's not not really who I am. So, anyway, I wonder I wonder about your story.
Did... Was that was that last person, that last educator in the hospital, were they more learned, or did they just let you talk more?
I... They were actually very good. And I think that's... Well, definitely at the time, I needed that firm person. It was actually a team of people.
I needed that firm guidance to say, this is what we do. This is how we do it. This is the, know, the this is how we deal with meals. This is the basal. This is the bolus.
And I just needed those instructions. So
From from an from an authoritative voice that you could trust?
Absolutely. Right. Also, one of the nurses, the diabetic nurses, she happens to have a brother with type one diabetes, so she was really good because she understands that lived experience as well. But yes, I just needed that authority. Also it just happened to be that on the day when my daughter was diagnosed, on that Saturday, when they admitted her to ward, the lead consultant on the paediatric ward happened to be the pediatric diabetes specialist.
He just happened to be there. He was dealing with all sorts of conditions, but he was his specialty was within diabetes. So that was also so lucky in hindsight because he stabilized our daughter for the weekend until the team joined in on the Monday to take over from there. So so... Yes.
So those people that I could see really understood what they were saying were the people that I was clinging to.
Yeah. And now my bigger question around going through all this is, if how far out of the hospital in time until you realize that that person who you took all that confidence from didn't know a whole lot and you're learning more and more and more and more? Or did that not happen? Did you did you luck on a person who just really understood the whole thing front to back?
Yes. That is a good question. I would say that in the first week after being discharged from hospital, we were following everything to the letter. It was so rigid. And during the night, we'd wake up every two hours to do finger checks, and we would do everything we had to do during the day.
Following it to the letter, then not39:03
It was also the week when we were trying to figure out school because, obviously we had to have a plan in place for going back to school. So we were doing everything as we were told. And then at some point during that week, I realized that, no, there must be more to this. The nurse that said that she was a type one mom as well, she said to me, look, in the future, you will look into sensors. And she'd mentioned the abbreviation CGM and all sorts of...
I I didn't even understand what she was saying. Like, how would you know what a CGM is or what it stands for? So I was like, it's as if you were speaking to me in a different language, but okay, I just have that mental note that there are other things out there that I probably need to look into.
Right.
So in that week when we were at home trying to figure life out and work and everything, I started looking into what she was telling me about sensors. And that is how I came across the option of having a Dexcom. And I was like, okay, I need to look into this. So I did. I called our lead nurse because at that stage, our nurse was in contact with us every day because her responsibility was to make sure that we were okay.
And I think it's still that on the podcast, we hear quite often about the do not die policy. I think it was definitely that, that we had in place at the time. But equally, with the technology or lack of technology, I would say that is the best we had, I guess. But then I researched this sensor that happened to be the Dexcom. And I mentioned it to the nurse.
And she said, yes, well, that's something we can look into in the future, but not right now because we don't have enough evidence to say that you need it or we need more justification that the number of finger checks that you're doing in the day is going to cost more than the Dexcom payout. And I was like, well, this is just crazy. Like, you know, why do I need to be justifying
Yeah.
Better control for my daughter? So in the end, me and my partner, we had a chat about it and we decided that we were just going to get one anyway because you can do that privately as well in The UK. So we did. And I was thinking to myself, I said, surely, just out of courtesy, if nothing else, I need to call the nurse and tell her that, well, look, I I know we had this chat, and you said that we should wait. But I just wanted to let you know that we have ordered a Dexcom, and we just want to see how we get on with it and see if there is value in in having one.
The phone call she dreaded making41:46
And there was the silence, which to me felt as if it was going on forever. I was just so so ready for her to say that, well, I just told you not to get one. And the first sentence that she said was, It's the best decision you have made. And I was like, Am I speaking to the same person? Like, literally the day before, you were telling me don't get one because we need to justify it.
And now you're saying it's the best decision. And she said, If I ever had one or any of my own kids had diabetes, I absolutely would be getting this straight away. So
But, Monica
in a way
Because of your accent, you seem so delightful. But were you thinking, oh, you when she said that? Like, or, like, what was popping into your head when she said that?
Absolutely. Well, that's definitely. But also also, I I think that was the first time in this journey when I realized that actually there are specialists, and I'm not taking anything away from them. I think they are doing an amazing job in what they can. But I realized that I need to have my own thinking behind this as well.
I can't be just relying on the system because that is going to take me nowhere. So so that was the the turning point in my head as well. I realized that, yes, they are there to make sure we are safe, to make sure that everything is okay. But anything else, that is now down to ourselves to figure this out. And that is really what happened in the end.
Oh, it happens all the time. Are you kidding? Like, everyone's had that feeling that that... Well, and if you haven't, by the way, you're probably not paying attention enough or you trust people too much or something. But, like, we...
When she says, oh, no. We we don't do that right now. There's not enough evidence or whatever she said.
Mhmm.
She didn't say it was a bad idea. She said, that's not what we do. There's not... So I don't understand. Is that is that an insurance thing?
Is that NHS there?
It is NHS. Yes. And, also, this was five years ago.
The
guidance that the NHS had was different to the guidance that they have right now. So I am really happy to know that children that leave the same hospital, the same ward, the same team get as a minimum, they get a well, a sensor, whether it's the Dexcom or Libra they use, but they do get it as standard right now. For us, we were privately paying for the DexCom for the first two years, and that is when the there was change in I don't think was legislation, it was guidance that we have. And that may in this guidance, it was stated that all children and I'm not sure whether it was an age of 16 or 18, all children basically have it is recommended that they leave hospital with a CGM. So it is different now.
But at the time, it wasn't. And because they did not have that budget within the NHS that was allocated to these children leaving hospital with a CGM, our hospital did not have that either. So that is what they were saying to us. We need to evidence how many finger checks we are doing, why we are doing so many. And then they only will review to see if the NHS is paying more for finger checks than it would for having a sensor, if you know what I mean.
Why her hospital had no budget45:11
So they are they are just looking at the money aspect.
I hope it makes everyone listening wonder how many decisions are being made by My Health that aren't the decision the doctor wants to make, but a decision that, you know, insurance wants to make or money or the hospital or something like that. Because they can't just... It's not gonna be just this thing. There's probably plenty of times where somebody's looked at you and thought, well, what I wanna do is this, but what we're going to do is that. Mhmm.
Well, that's upset. Yeah. Absolutely. She and she she lied right to you. She had no trouble because that's that's the game.
Right?
Absolutely. And, you know, she is just doing her role. She's doing what she was told to do. She's following her guidance. But when I spoke to her privately as a person, she said, best thing ever.
Best decision you have made. So in a way, I was delighted. But as you say, frustrated as well, because why could you not have told me the same thing the day before? Like, why would you not say that? So anyway, I think that also...
Oh, yeah, the day before, actually, the first one, I reminded myself that was actually an in person appointment that we had. So at the beginning, we were checked in person quite a lot. And it was her sitting there. I think this consultant was there as well. And there was some trainee nurse.
There were three people in the room. I can't remember exactly who they all were, but there were three, let us say, specialists of some kind. And I believe, in hindsight, I believe that she had to give me that answer. She could not just say, oh, yeah. Go and get it because that would not be what her colleagues were supposed to hear.
So it is just a game in the system, isn't it? And then the other thing is, well, definitely in The UK, I don't know about other countries, but we also have what we call a postcode lottery. So really the care that you get is dependent on the hospital that you are under. And ultimately, that also depends on where you live. So if you live in London, you might go to the closest hospital for your diabetes care.
And they might have different policies and procedures in place compared to a hospital in, let us say Manchester, for example. And it literally is down to where you live to see what it is that you're actually getting. Yes, we do have UK general guidance as well, but it is also down to the hospital groups. There is an abbreviation for those hospital groups, which escapes my mind. But it is down to those hospital groups to decide how they are going to be distributing that pot of money that they get for pediatric diabetes care.
So it really varies depending on where you live, what care you actually will be getting. So us, for example, five years ago, we were leaving Blitchy just with MDI and finger checks. Meanwhile, I knew of children from other areas and hospitals that straightaway have the sensor and the c... And a pump on. So so it really varied a lot.
It's frustrating too.
Absolutely.
Yeah.
Absolutely.
Especially because that's how I left in 2006. So you would think there... Although you... Are you guys late to the game on some of the technology stuff just because you're in Europe, or is that not the case?
That is a good question. I... From the... Is it only from the last five years? What...
My understanding is that the way these companies work is they've... Most of the time, they will target The U. S. Market first. But then The UK and Europe is not far behind.
So obviously, it will depend on the regulatory aspect and all the checks they need to do. But that is typically what I am seeing. So for when we started, we were on the Dexcom G6. But then because we were privately paying for it because of everything happening with the hospital and the team, my daughter was one of the first people in The UK to be transferred, if not the first person in The UK to be transferred to the G7. And the reason for that was because we were private.
It was not through the hospital. We just privately spoke to Dexcom and they, in fact, contacted us to ask if we would like to. And we're like, well, yeah, why not? And it has been the best decision we have made. It's working brilliantly for us.
But I think at the time, what happened was there was some... I don't know. Were there some issues with the FDA that there were the... I think it was something to do with the mute settings that, you know, the g seven, at least in The UK, we can mute alarms for whatever time period we decide to do it for with a maximum of, I think, eight hours or six hours, whatever it is. Where...
Whereas I... My understanding at the time was that they did not get that clearance in The States. So it just it was very unusual that The U. K. Was first compared to, in this case, The U.
S. But yes, so I would like to think that we are quite good with technology, whether it is The UK or Europe. We do have a lot available. There are plenty of sensors available. So definitely, Libre is the next one along.
There are also earlier this year, I went to a Diabetes UK conference, which is Diabetes UK, it's a charity that we have in The UK that does diabetes research. And it's not only type one, but also gestational and type two and so on and so on. So I went to that conference only because I like to educate myself and just keep up with what is happening in the world of diabetes. So I went there. And as you do have at these conferences, there are plenty of stalls that you walk around and have chats with different company reps and see what they have or what they're working on.
And I was really surprised by the number of CGMs that were out there. I can't even say the names of these companies, but there were quite a few apart from Dexcom and Libra, of course. There were quite a few other players entering the market, which to me, that was a big shift. I did not realize that there are so many new ones coming out now.
To break in. Yeah. Whether they Absolutely. By the way, whether they will or not, it be... Is another thing.
But... Yeah. Mhmm. I I mean, I think it's a lucrative market, so I assume that, you know, other people are trying to make that money too.
Of course. Yeah. And then similarly with pumps, we do have... Well, there is a lot to choose from. It really depends what you would like to have.
So, so, obviously, we do have the Omnipod. We have got Tandem. We have got Medtronic. There is also this other make that escapes my mind. But I think that is one that actually we do have in The UK, but it's not in The States.
I I think I got that from the podcast that that that is a pump. But I can't remember the name of it, so it's not very helpful.
Well, listen. You... In your note to me, you said you imagined the wrong future. I'd love to know what that means. And by the way, I...
Before I do that, let me say something funny. People don't know before we started. You said, I'm gonna say a lot. You haven't said one time. You don't need me for this interview.
You absolutely could have done this without me. And and I... And forty three minutes ago, I asked you how you found the podcast. You said, well, let me go back, and I'll get to it. But you never got to it.
I'm so sorry. I... Actually, as I was speaking, I had at the back of my mind, I was going to get back to it.
Don't worry. I enjoyed your conversation. That's not my point. But but I'm just gonna pop forward to the to the part in your in your note that I really wondered. Like, you said you imagined the wrong future.
When did you imagine it, and when did you realize it wasn't what you thought?
Yes. So that actually will answer the the podcast question
as well. Maybe maybe Monica. We'll see.
Another forty three minute data, I still have that answer. Sorry. When we were at hospital, that was when I already said my world just collapsed because I had no idea what was to come. And I just could not even imagine what it meant that my daughter now has type one diabetes. And also things that, I don't know, probably come to most parents, things like I hope she can still have the same life as her friends.
I hope that she can still have whatever family life she chooses in the future. I hope that she can still retire. All of these questions were in my mind. And obviously, at the time, with the amount of information that you have to absorb and understand and put into practice within a very, very short period of time, plus these big thoughts at the back of my head just mounting, just could not find any answer. Nor did I even know anyone with type one or I did not have any previous experience with type one, so I just could not answer those questions.
And I think the first few weeks post diagnosis for us, the priority was to get her sorted. So we obviously were diagnosed, we had to figure everything out, we had to learn all about management, and then the next step was getting her into school. And that was also a journey. At first, it was difficult because my daughter was the first child with type one diabetes at the school. In fact, only years later, I found out that they did have one child previously diagnosed, but they basically left the school because it was just not working that all that help that
Getting back into school55:34
That's the child not comforting.
Absolutely. But that I only found out a couple of years ago, which one of the teachers just happened to mention to me in passing, really. But that comment made a lot of sense because at the time when we were trying to get our daughter back into school, I said to my partner, I said, look, I don't think they want us back. Because that is how it felt. It felt that they were doing everything not to have our daughter back at school.
And I said to them, I think the first time around, I was very close from just throwing the phone across the room because I just could not speak to them. That is, you know, the discussion that we had or trying to have. Meanwhile, when I did figure it well, not figure it out, but when I calmed down a bit, I took a deep breath, I said to the school, look, I know that this is different. I know that this is new for you. It is new to us as well.
We just need to figure out. We are in May, and the school year is finishing early July. We just need to keep her going until the end of the school year, and then we will see what happens. And the reason why I said that was I did not want the diagnosis for my daughter to mean that she will also be now changing schools and she will be losing all the friends that she had. I did not want her to have that connection.
That type one means that she can't have anything that she loved before.
Of course.
So it was difficult. The first few weeks, I was sitting in a car park in the car for to start off with, we did only a couple of hours, and then we extended that to include lunch. And then we added the afternoon as well. So we got there in the end. And in fact, there was one teaching assistant that if it wasn't for her, I don't know what we would have done because this T we abbreviate them to TAs in The UK.
We don't have nurses at schools. So it is one of the staff members that typically looks after children with type one in The UK. And this TA, she just said, I'm here, I'm ready to learn. I've got my notebook. I will do anything you need me to do with the hospital.
In fact, the hospital also came in to see what she was doing on a day to day aspect, how she was managing, what her understanding of type one was, obviously, after going through some educational sessions as well. And she literally was the gem that we needed at the time because if it was not for her, it would have been just yet another battle to get our daughter back into school. So anyway, so we figured the school out. Everything was fine. And in fact, she continued in that school until the end of primary.
In fact, now in September, she will be going to a new school, new secondary school. So that is going to be a big change for us. But yes, so that worked out well. And when I knew that my daughter was fine, I knew that everything was in place that we needed for her at the time, that is when it really hit me mentally. And that is also where these thoughts of what is her future going to look like came back.
When it finally hit her58:50
I had support from two groups of people that I say. So I have an amazing friend and she just when she first heard about our daughter's diagnosis, she just said, look, when I was sitting in the car park basically at school, she just called me and said, look, what coffee do you like? What what would you like to have? I'm going to be with you in ten minutes. We're going to just have a coffee and chat.
And she was the support that I needed mentally for myself, not for my daughter, but for myself. And until this day, I'm just so, so grateful to have her in my life. The other aspect was my family. One of my brothers, he really, really did a lot for me, And he realised that it was not only our daughter that needed the help, who by the way, at that point we thought we had it all figured out. But he realised that it was me that needed that help from this mental aspect.
And he organized, he found a psychologist, he organized some sessions and he said, look, just have a few and just see how it goes. And that, in combination with then coming across the podcast and starting to learn, to listen to people's stories, those were the aspects that actually lifted me and have shown me that actually there is a life with diabetes and it's not the end of the world as I had in my head. And I actually did make note of a few episodes that really, really stuck with me. Until this day, I just keep on reminding myself about them. So when I found the podcast, I can't really remember how I found it.
I think I just joined different I get quite involved in communities. So I joined different Facebook groups. And in fact, I think one of the type one mom nurse, she mentioned to me, oh yeah, you need to join the local Facebook group. So I was like, oh, yeah, didn't even think of that. So I did.
And somewhere along, a few people mentioned the Juice Box podcast. I was like, what on earth is that? So I thought, oh, do you know what? I'll just investigate it, and I will start listening and see what it's all about. So that is what I did.
And I just went to the very first episode and started listening in order to the episodes. One at the very beginning that I remember till this day is there was an interview with a lady, and I apologize. Her name escapes me. She was speaking about how she was climbing Mount Everest.
You know what's so funny about this one? Everyone remembers it that way, but it's a it's a mom of a a girl who climbed Mount Everest telling telling the girl's story. But everyone remembers it as the climber having type one. Unless I'm out of my mind. Was it a two parter?
I can't remember, but now that you say it, I think you're right, actually.
Yeah. It's interesting how p... Well, you know what else is really interesting? I wrote a book about being a stay at home dad years ago. There's two chapters in it about diabetes.
People who don't have diabetes in their life when they're asked don't remember the diabetes part, and people who have diabetes in their life think it's a book about raising a child with diabetes.
Interesting. Yeah. I always I always trying to find your book, and I just could not get hold of it.
I think it's out of print now. I I have a couple here. I could send you one, but I'll have to find out what children with diabetes charge you to send that coin over. I'll have to ask you for that money.
Of course. I'm more than happy to do so.
There's gotta be a box of them here somewhere.
Yes. So that would be amazing. Yes. So that was the Everest episode that really stuck with me. Then there was another one worth, again, I can't remember the girl's name, but in my head, she was a teenager and she was diagnosed a while ago.
And her management, obviously at the time as it was, was very basic, I. E. MDI, or maybe not even MDI, maybe injections and finger checks. And she mentioned about traveling all over the world, and she would... She moved out quite young from her parents' home.
And, anyway, in the end, she went sailing. She went sailing for, like, six months around the world or wherever it was.
Yeah. They they... She was young at the time too. Yeah. Yeah.
And teenager. And they had to mail her insulin to a port where she had to go get... Yeah. Yeah. That's a crazy story.
She was Canadian, though. Right? I don't trust Canadians.
Oh, was she?
Yeah. Yeah. Yeah. No. No.
No. I'm just kidding. No. So
Another bag coming out.
So why why do you think those episodes... Is it just hearings? I mean, it seems pretty obvious. Right? Is it stories of people accomplishing big things when you're just worried about small things?
Absolutely. Yeah. Was it was showing me that these things, even people without type one do not do. So, you know, so type one is definitely not the obstacle over here. You absolutely can do whatever you want to do.
Also, it just happens to be that, I mean, the two episodes that I did mention, they were about women, girls, and obviously me having a daughter. I probably could it it sort of made me visualise that, okay, her... It's not the end of everything for her. She can still be this adventurous girl and do all the things that she wants to do, and she can be independent, and she can just be the same as anyone else. Yes, there is more...
A little bit more thinking behind it and planning for things, but there genuinely is nothing that stops her. And, yeah, and that... Having heard these stories and also listening to the podcast, I've listened to all sorts, you know, end management and Jenny, and I also really like the After Dark episodes. I don't know why, but but I do like them.
So do I. There's not enough of them. By the way, people were way more, forthcoming during COVID than they are now. Like, I don't get as many, like, after dark, conversations as I used to. I, by the way, more of those.
Yeah. Yeah. Yeah. Don't be so embarrassed about your life. Come on and talk about it.
I I tell people all the time when when they ask me about, like, what episodes do you, like, stick in your head. Like, the thing that sticks in my head probably more than anything is the girl diagnosed on a heroin bender. They they lock her in her grandfather's house to try to clean her up. She escapes through a window to go try to cop drugs and then passes out in the street, and they think... And it's and it's because of DKA.
Like, that's insane. And and that's the one that pops into my head all the time. It's funny because there's 2,000 of them. I... You know what I should probably do?
I should probably stop making the podcast and go back and listen to it. I do think that would be interesting. I'm not gonna stop. But, you know, one day when I stop, maybe I'll go listen to it because I can't remember half of it. It's it's really...
I can't remember what I put on last week, to be perfectly honest. So... Because I'm kinda making it into such a phase. Yeah.
Yeah. Yeah. I mean, you you do so many of them that really... It's like doctors. You you go to a doctor and you say, oh, hello.
I... Time when I came here, so now I have got this and that. And do you think that the doctor remembers exactly what you were speaking about a month ago? Yeah. But the reality is the doctor has no idea who you are.
Not even
a stranger. Imagine. It's very similar.
I always try to remind people that, like, just before they open that door, they're... They've got a folder outside or maybe an iPad at this point. And they're looking and trying to remind themselves of who you are before they go in. And you're sitting there thinking, oh, there's my long lost friend. They've been gone for three months.
I can't wait for us to reconnect. And that person's like, who's this now? Monica? What? She got a kid?
Alright. Hold on.
Exactly. So
So the podcast so the podcast was helpful, but so very much. Sorry. So was therapy and, a connection with the person who knew what your life was like, a personal connection.
Mhmm. Absolutely.
Okay.
Yes. Those were the things that absolutely made the biggest change to how I viewed type one myself. And I think that that is also ultimately what then allowed me to pass on this perspective on to my daughter. I mean, the very beginning, I obviously would not show her the side of me really struggling with the diagnosis. But having convinced myself that actually type one is not the issue over here, it is just whatever you want to do in life, you can do that.
I realize that that is also the framework that I want my daughter to have. And I would like to think that that is already happening. And she genuinely does everything. She's very, very much into slalom kayaking, whitewater kayaking. So she does a lot of that, a lot of training sessions and competitions and all sorts.
Yeah. That's... Again, there's nothing stopping her. We go camping. She does a lot of swimming.
She does snorkeling in the sea, holidays, or anything that we do, she does. There's literally nothing that has stopped her so far because of type one.
That's awesome. So you feel like you were able to hold it inside, get it over to her, and now you feel as good about it as she does?
Absolutely.
Yeah. Do you think that one day when she's an adult, you'll share with her how it was for you in the beginning, or do you not think you will? Because I think about that a lot.
That is a very good question. I don't think I ever thought about it. My friend... The friend that picked me up at the beginning, she mentioned to me that I should start writing a diary about all of these things happening and what's going through my head and what I've been doing to fight for whatever it is that we needed to fight for. And although I do take notes, I'm not really a diary person.
I think it's because I'm into science myself, or maybe that's why I went into science.
I'm not really
good with essays and books and all of that. So I do write bullet points, but I don't really put it into pretty sentences. So I obviously have not answered your question, but I actually don't know. I don't know if I would... On one hand, I would like her to know that there has been a lot happening.
But on the other hand, I don't want to put that weight on her. I don't want her to think that, oh, it's because of me or something because it absolutely is not.
So there
any parent would do.
So you're matching my thought, except I take it a little farther, and I say, it's not possible that she doesn't know. Like... But, like Mhmm. I hear I hear what you're saying. Right?
Like, I don't see Arden as a burden. If she's listening to this one day, I've never seen you as a burden. I don't see you that way. I don't know how she wouldn't feel that way about it, though. But my point is, isn't it possible that she feels that way already and I'm pretending she doesn't know?
And wouldn't it be helpful if I told her that's not how I feel? Or Yeah. Is it possible she has no idea? And I'm and I'm... I could help her through it, you know, or...
And I'm gonna tell her, oh my... Something that's gonna make her feel that way. I don't know. Like, you know what I mean? Like, I don't know what to do.
I I always on the side to just say it, but I... It's hard not to it's hard not to wonder if it's the right thing. That's for certain.
And it's really tricky, and it does make you wonder how much of that load they are already carrying. So do you want to add even more? And the reason why I say it is even a few weeks ago, my daughter, we were away. And in fact, we were at my mom's house. My daughter said to me she was having a low.
“I wish you had diabetes for one day”1:11:11
And she said to me something along the lines of, I wish you had diabetes for one day just to realise how I feel. That was... That really struck me. And I I honestly didn't know what to reply. I didn't know what to say because it just came out of nowhere.
I mean, she had blows before, and she had blows since, and never did she say anything like that. And then we also... It happened to be the same week. We did a pod change, and we have done hundreds of pod change... Changes by now.
And most of the time, everything is fine. And then that same week when she said, I wish you had diabetes for one day, we had a bad pod change in terms of it must have struck a nerve or something, and it was really painful, the sight that we had. So much so that in the end, we took it off and we just put a new one on. But I think that was in that week, it was the tipping point for her. And when I saw her in tears, I was in tears.
And then I could see her studying my face, and she hasn't mentioned anything since. So I feel so bad again in terms of does she know that that is sad to see? And now she's trying not to express that side again. I don't know. But
But she feels she feels alone, and she wants you to understand what she's going through.
Absolutely. So have Absolutely.
Have you thought to say to her... I don't know how... May... Maybe this is like a... You know, I hear...
I don't know. I've never been to England, but you hear people joke about British people and their feelings. And so, like, it's... Which... You're laughing as if maybe I'm onto something.
And I, I wonder, like... Because as you're talking about this, all I can tell you is that if this was the conversation I was having with Erica, Erica would say to, like, name the thing, and that's what makes it go away. Like, just saying it out loud helps you get through it. So do you take her out to lunch somewhere and sit with her and say, look. I've...
I heard you twice last week. Tell me you wished I knew what this was like. I don't know that I can completely, obviously, know what it's like, but let's think of some ways where I could... You know, what do we wanna do? Should I put a pod on?
Should I... You know, like, you know, should I... They used to have these, who made them? Lily made goggles where they they mimicked being low. You put them on, they made you, like, dizzy and woozy and everything to try to help people.
I don't know if they ever put those out in the world or not. But but I'm I'm with her, by the way, and I'm sure with you too, I feel terrible that I don't understand how Arden feels.
Absolutely. Yeah. Absolutely. And we won't, unless we go through it ourselves, which makes it even harder because, I mean, I just hope that it isn't that my daughter is trying to say that. Or maybe she's just saying that it is such a feeling that she can't describe, that she wishes that I went through it myself to fully understand what it is.
Maybe that is what she's trying to say. But I just hope that she doesn't feel that she's alone, that nobody understands her. I hope that that is not those... The side of things
that trying get it far. But maybe that is how she... Does she have any friends with type one?
So we know people with type one. We do know children with type one. And in fact, when, when she was doing that cheerleading, when we did go back to cheerleading, when she was first diagnosed, I saw this one girl that was it looked more or less the same age as my daughter, and she had a Dexcom on her arm. And I just followed that girl, and I went to see who her parent was. And she finally gets to her mom.
And I stopped this mom, and I say, Look, you have no idea who I am. I must speak to you. And she was the first parent that I knew that was going through the same as what we were going through. And the two girls, they became quite friendly and we went out for different events together or day trips or whatever it was. And it was just nice for them to have each other and know that they understand each other.
Since then, we met quite a few other people with type one. But it is quite strange. I don't think my daughter has the need to meet up with other people with type one. This will sound strange in terms of I don't think, I mean, she absolutely will meet up with anyone, but I don't think she feels herself that she needs that connection. And I think the reason for that is diabetes, all in all, is what I believe is it doesn't seem to be the main thing in her life.
She has got so many adventures and friends and things that she does and sports and school and everything. And type one is just alongside all of those things rather than being the main thing in her life. So in a way, I am happy about that. But then also, recently, I was going through my phone, as you do scrolling through Facebook, and there was this poster about somebody who was organizing a type one picnic in London. And she just happened to be going past and she was like, oh, what's that?
And I said, oh, there were some families with type one, children with type one, and they're organizing a picnic, which I actually join in. And she just looks at me and said, no. So I didn't think that, in a way, I think it is good because she just gets on with life. And although she was six when she was diagnosed, she just doesn't remember a time without diabetes.
Like, you
know, it was always Monaco. There.
You're you're talking... Like, you could be talking about Arden when you're saying all that. Okay?
Okay.
At the same time, Arden does have a couple of friends with type one, and I think from a distance, it's been valuable for her. And and I, I had an opportunity, a week or so ago. So this is... Don't know when this will be out. This is August 19.
There's no way this will be out before then. Maybe I can make it work that way. But, I'm gonna be at the Touched by Type one event in Orlando. And Touched by Type one contacted me, they said, hey. You know, would you like a table on the vendor floor?
And I said, sure. Like, let me do that. She said, what would you put at the table? I said, oh, just, you know, information about the podcast and, maybe about the cruise for next year because the cruise goes out of Orlando next year or that area, and I thought maybe that's a good place to tell people about it. Our problem is is that I'll be at that event speaking all day.
So what am I gonna do? Just put the table up and leave stuff on it? Nobody's gonna stop at it. They're not gonna know what it is. I need somebody to be there.
And and I thought, I'm gonna ask Garden to come.
Okay.
And she's never done anything like that before. But I said, hey. You wanna spend a couple days? I just said, would you like to lay in the sun in September in in Florida for a day? And she goes, sure.
And I was like, okay. I said, well, we'll come in on Friday. You can have the whole afternoon. Do whatever you want. And then on Saturday, you'll man the table, and Sunday, we'll we'll go home.
And she's like, alright. Like, I'll come. And in the back of my head, I thought, I hope this is great for her, and I think it will be. Because because, Monica, like, no matter how many times I see people come together in those situations, I often see kids who act like, I don't wanna be here. This isn't for me.
I don't care about this. And they eventually melt into it. So, like, I don't... I'm not saying that your daughter or my daughter or anybody needs to have a thousand friends with type one or that every time they walk outside, they look like a diabetes influencer, like, telling everybody, which, by the way, seems silly to me. I'm not gonna lie.
And, you know, like, talking about their blood sugar all the time and blah blah blah. I don't think that's what I'm saying. I'm saying that something happens when everyone gets together, and they quickly and quietly get very comfortable, and I'm I'm not making it up. And I've seen it happen to kids, and I've seen it happen to adults. I've seen it happen to people who are too excited to be there, and I've seen it happen to people who are too negative about being there.
But but I... You don't realize until you gather like that. I saw it on the... I've seen it on the cruise now for two years. You know, some people...
Like, I'll ask kids. I'm like, did you wanna come, or did your mom make you? Overwhelmingly, two out of three will say my mom made me come. Mhmm. Are you having a good time?
No. And then a day later, I see them out messing around with some other kid they met on the cruise, and they're having a good time. And then three days later, we're sitting at dinner. How's it going? They're having fun.
They're smiling. There's something about it being there that stops you from thinking about it. Don't... I I can't quantify the whole thing, but trust me, it's a good idea. So that's
Yeah. A interesting point.
I don't know how to I don't know how to make it happen. I really don't. You know? But... Because the problem is is the thing your hospital runs or a lot of that local stuff is just a bunch of pump vendors and stuff like that.
And you're like, this is... This stinks. You know what I mean? Like, this isn't what I'm looking for. But some of this other stuff, I I don't know.
I just think if you can get a get together together, like, that kind of thing, you'd be surprised. Even if you just had one friend who... I don't know. Maybe you get together with some woman, you know, who you know. That's not how I met it.
Some woman, but a person you know who's also has a daughter with type one. Sorry. That was oddly aggressive for no reason. And and and just have a lunch and never even mention it. I I I tried to tell that story on the podcast of Arden in college.
She made a friend at college. They were they were friendly in and out of class for, like, a month before they realized each other had type one diabetes.
Amazing. Yeah. Oh, that's interesting.
And now they talk... They're friends. They talk all the time, but they don't talk about diabetes. Except once in a while, I see them reach to each other about something, and it's usually the, it's usually the psychosocial, like, personal stuff. It's not usually about management ever.
And how amazing it is for them to have each other as well, and I think that those are truly the people that will understand each other fully.
Yeah. So, anyway, I get what you're saying about her, and I don't think you're wrong. I also don't think that's the full story. That's it. That's all I got for.
A good point.
Monica, I have, overbooked myself this week. So I have to stop because I have to start again soon. So I wanted Oh,
I'm so sorry.
Don't you be sorry. You were chatty as could be. I thought it was fantastic. Tell me that I've covered everything, or if there's something I've missed, now is the time to bring it up.
Mhmm. Let me just have a quick look at my notes. So in the email to yourself, I wrote a couple of points, and one of them was also that move from child to teen and how we're managing that. And I mean, you probably can get it from today's conversation. I definitely am a type A personality.
So I think that was a big shift for me to also understand that, yes, at the beginning, was down to myself and my husband to do all of that management. But as our daughter was growing up, she wanted independence. And I realized that my job at that point wasn't that full management anymore, that full control that I had at the beginning, but it was to give her the skills and the confidence and the tools to manage Type one herself. So that is where, again, in my head, I had this shift. I need to move her from being fully dependent on us to building independence for the future, for her own life.
And I was thinking about the best I can compare this to is when you teach your child to cross a road, when they are tiny, tiny, you just take them and hold their hand and you don't even say anything, you just cross the road with them. Then when they are starting to get a little bit older and they are starting to understand how the road works, you explain that, well, here's a zebra crossing and here are some lights that we can use to cross the road. And then you start shadowing them, making sure that they have understood everything you have told them. And at one point, you just have to take this deep breath and just let them go. So I think that, that was a very similar journey that we had for where we are right now with type one diabetes and at management side of things.
Obviously, at the beginning, everything was set for her, even things like meals at school. On the Monday, we set everything to for the whole week. And our daughter did not have much choice. She knew that on the Monday, she would get a jacket potato. And then on a Tuesday, there would be some sausage and mashed potatoes, whatever it was.
But she was getting older, and she realized that that is not what her friends are doing. And she wanted to have some choice in her life as well. And then things like being at friends' houses and going away for day trips with friends and all of that. We realized that we had to build that management into her. So similarly, like with crossing the road, we made sure that at first we were explaining everything and then guiding her and then doing the changes with her.
And one of the things that actually was quite big in that journey was the carb counting. And I thought, right, there must be something that can help us with that. But I couldn't really find anything. So she was, like, let's say, eight or nine, and she wanted to go away with her friends. And she had no idea what she would be eating at those friends.
So in the end, what I did was I actually built an app myself. I built an app for my daughter so she could use it. I called it carb count AI because that is exactly what it does. So what I wanted my daughter to be able to do is literally take a photo of her meal, And that app is just giving her a carb estimate. So that was, you know, yet another tool for us on that journey.
And now she's doing all of it. She's doing changes. And obviously, we are there to help. And sometimes she has days where she says, look, can you just do it for me? I just want a break.
And that is absolutely fine as well. So I think finding that balance for them as well is quite important too, making sure that they do have a break from type one sometimes. So, so that was the change that we had. And now she's going into secondary, and I believe that she is going to smash it. She will know exactly what to do.
And she knows for the last year, she really has been doing her own management at school already. So I've got that confidence in just letting go at this stage.
I think that you're gonna experience that... Don't be sorry. You're gonna experience that over and over again. It's not just... I know it feels like there was this big awakening and a let go and a move forward, but that's gonna happen a a bunch of times.
So Yeah. Yeah. Because because this is gonna shift a number of times. And I think diabetes shifts constantly and then sometimes leaps and sometimes falls back and sometimes for some people, it goes backwards. But this won't be the last time you feel that way.
And... But great job making the... Doing the app and everything. That's pretty awesome. Yeah.
And by the way, everyone's gonna be... I know people are like, oh, I'll I'll do an app, and I'll start. You you won't. Everyone's just gonna know how to do it themselves soon. So no one's gonna need your your app.
They're gonna just make their own and and do that, not just type a moms in England, but everybody. Yeah.
Yeah. The thing is that technology is helping us, so much nowadays. But also a point on technology, I was, thinking about it before the podcast was that technology is great because, you know, we have got all the CGMs and pumps and together they give extreme visibility as to what is going on. We can see all the arrows and the numbers and the rises and the falls. But at the same time, I found myself at one point being really fixated about it.
I had to check every single number as it was appearing on the screen. So I had to remind myself that technology is there to give my daughter freedom, and it's not there for me to control her even more, if you know what I mean. So that was also part of that. And same with, you know, you mentioned the app. I think that that is also there for her if she...
If if it helps her, if she's in a situation that she she she doesn't want to guess or whatever, she can just use it. Same with, you know... Yeah. Sometimes she will make a mistake, and we just learn. We take that as a learning point, and we just move forward.
So so... Yeah. So that is the technology side of...
Sounds like you're doing great. It really does. And you're adapting and paying attention and being flexible. I think all that's fantastic. I I I don't see I don't see where you're going wrong.
I'm gonna guess her a one c is what? In the... Is she taking care of herself mostly?
So at school, she's doing it herself. Whereas at home
It's you?
If she eats something, she will do it. She will... She knows she needs to do a bolus for snack, so she will take her phone and do it. But then if there's an alarm or something, I might give her some extra. So we try to share it between ourselves.
But, yeah, her 81
Wait. Wait. Don't don't tell me. Let me guess, lady. Don't tell me.
Let me guess. Hold on. I I... Just based on your conversation and what you're talking about, I'm gonna go 63 to 65.
You've nailed it.
Yeah.
In fact, the latest one that we had was slightly low. It was 6.1. But, typically, it's in the six three, six four range.
The six one came after, the summer. Right? She was home with you a little more.
So, actually, that was before the summer. I'll tell you what gave us the six one. It was Activity. So we were on the Omnipod for a while, and we are looping. In fact, we started the Omnipod three years ago now.
So it's been okay. At the beginning, everything was fine. But I just thought that need to... That surely we can do better than what we are doing. So I obviously listened to the podcast and I really listened to the episodes with Kenny, Kenny Fox.
And then I realized, again, scrolling through Facebook as you do, I realized a post that he put on to say that he is doing coaching. And I was like, oh, that is amazing. So I contacted him, and sure enough, he he was available for coaching, and we did a program with him. And, yeah, that has been phenomenal. So so the sixth one was after we implemented Kenny's techniques and methods
Very nice. Well management. I'm not affiliated financially, but foxinthelouphouse.com if you're interested in Kenny. And I... I'm gonna give myself credit for the...
I have to go, but I'm gonna give myself credit for the rest of the day for knowing your daughter's a one c just from your conversation. But I also want people
Well done.
No. No. No. Like, it's a magic trick. It's not, though.
You you... The way you talk about it, the level of focus, the confidence I hear in your voice, the understanding. We didn't even talk about management stuff. It was all just from the conversation. Mhmm.
I picked out where I thought her a one c was. Plus, I I I give some, you know, weight till she's taking care of it during the day, and I bet you're gonna be a little more aggressive with high blood sugars. And it's no different than if you heard the episode a couple of weeks ago with the mom from Africa. She was from Zimbabwe.
Zimbabwe. I could listen to that. Yes.
And I listened all the way through, and I tried to, like... I can't... I'm, like, forty five minutes into it. I can't figure out why is the kids a one c in the eights because the moms understand... The moms understanding codes differently than the outcome.
And that's how I figured out that they weren't giving him a modern basal insulin because she was doing... The things she was doing should have led to a different outcome, and they weren't. And I knew there was something wrong if that's what was happening. So it's just the same idea. I've been talking to people a long time.
And, like, usually, I'll tell them, like... Especially if they're early on in their diagnosis and they're so worried it's not gonna be okay, I'll say, don't worry. It's gonna be okay. I can tell from talking to you. Like, I actually know where you're going.
You don't know where you're gonna end up, but I do because I've talked to a version of you so many times. I can tell where your effort is going to put you. And so this is really no different than that. So I I would say that it's a space where if people are listening, like, can't get to that. It's a real good fake it till you make it situation.
Just keep putting your... Surround yourself with people saying these things, do the things you're hearing. That's why I think listening to the podcast leads to a lower a one c because you just match yourself up with ideas that that lead to that.
So Absolutely.
Yeah. That's pretty much it.
So much I have learned from the from the podcast, you know, with the management and all these ideas and looping even. I mean, that was not an offer from the hospital, but I believe that that was the right way for... That was going to be the system that would work for us. So all of that, it only comes from the podcast. So I really am grateful to you for for doing what you do for the community, Scott.
Monica, it's a it's a genuine pleasure. I never thought this would be my job. Like, really, like, I... Everyone should be so lucky. Click on the link, support the sponsors, share it with a friend.
It'll find another Monica, and somebody else will be doing okay in the future. So thank you very much. I can't tell you, how grateful I am for you taking the time to do this. Thank you.
Thank you so much, Scott.
Oh, absolutely. Hold on one second for me. Okay? To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox, or give them a call at 18774.
That's +1 (877) 489-4478 and tell them Scott sent you. Twist requires prescription and is indicated for people with type one diabetes six and older. Arden has been getting her diabetes supplies from US Med for years. You can as well. Usmed.com/juicebox or call (888) 721-1514.
Many thanks to US Med for sponsoring this episode and for being and for being longtime sponsors of the juice box podcast. There are links in the show notes and links at juiceboxpodcast.com to US Med, Twist, and today's other awesome sponsor, the Eversense CGM. They make, of course, the Eversense three sixty five, and that thing lasts an entire year. One insertion every year. Come on.
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#1981 Third Place at the Science Fair
Third Place at the Science Fair
Veronica's son was diagnosed at five. He is extremely sensitive to insulin, hard to keep in range, and turned his own adhesive problem into a science fair project.
Jump to a moment
- The signs were buried in an ordinary week. Veronica's son was five, home watching TV, drinking more, and wetting overnight after being daytime potty trained. She sent a MyChart message to his doctor and got a call back before the office opened the next morning. He was diagnosed without a hospital crisis.
- He is unusually sensitive to insulin. Even his newer endocrinologist, still getting to know him, has remarked on how sensitive he is and how hard he is to keep in range. Veronica describes being able to read it in his face — his eyes get darker — before a number tells her anything.
- He decides who does what, and it isn't always her. He swings between wanting to do everything himself and not wanting to pause a video game. But device changes are hers alone, which means a pump failure at two in the morning is her job no matter what. He also won't allow a device to come off without an adhesive remover spray.
- So he turned that into a science fair project. They looked up what's in the adhesive remover he uses, searched for all-natural equivalents of those ingredients, and emailed a few companies to ask questions. He took third place — and they emailed the company afterward to say thank you.
- Her frustration is the small stuff nobody adjusts for. Recess cancelled because it's a hundred and three degrees, schedule changes that move activity around, and variables that don't get addressed in time to matter. She also describes what changed once they found other families locally and he went to camp — from saying he hated diabetes several times a week to deciding parts of it were actually kind of cool.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed.
- 504 plan builder — Free school-plan tool — for the kinds of day-to-day variables Veronica describes.
- Juicebox Podcast Facebook group — The private community, free to join.
Every word of the conversation
Welcome back, my friends, to the diabetes show that never ends. Remember this, nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin. Before we get started today, just let me say thank you for being here. I appreciate that you are supporting the podcast.
Cold open & sponsors0:26
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Hi. My name's Veronica, and I am the mom to a seven year old type one diabetic.
Oh, boy, girl, are we saying? We don't have to. Boy. Boy. Little boy.
Boy. I have three boys.
Look at you. Yeah. Did you stop after the third one and think, okay. I guess I'm not getting a girl.
Three strikes are out.
Don't tell them that. It went wrong three times, and I gotta raise these kids.
Yeah.
I had so
many...... Well aware.
You had so many plans
to a boy.
Well, that seems purposeful. But you had so many plans to... How you're gonna dress that little girl, and now look.
I did. And I have really lost the plot in life, and I now sew the bulk of my kids' clothes, and I don't get to sew any dresses.
Sewing her kids' clothes2:40
Wait. You've... Would you be... You... You're making your own...
Have things gone wrong? Are you out of money, or are you just bored? What is going on?
I I think I just needed a hobby.
Veronica's like, listen, Scott. I was losing my mind. Okay? So I I started making clothing.
Yeah. I have a pink sparkly sewing room, and the kids are not allowed in there.
Bet your husband didn't see that coming when he married you.
Well, doesn't Absolutely not. I didn't know how to sew when he met me.
I have said to my kids more than once referring to my wife, listen. She was cool when I picked her. I don't know what to tell you. They don't believe that. I'm like, no.
I'm... Seriously, I know it's hard for you to believe she really was. She was a rock solid choice. I don't know what's happening right now. So tell me how old, was your son when he was diagnosed?
He was three.
Oh, gosh.
Yeah.
In your little pecking order, he's the oldest, the middle, the youngest?
He's the oldest. Yeah.
He's the oldest. He was three. Were any of the other kids, standing up by that point?
Yeah. The middle brother was... Had just turned one a couple months prior, and then, baby brother came along Were you... Couple years later.
A couple years. You weren't pregnant when he was diagnosed?
Well, I was, but we lost that baby the week after he was diagnosed. Oh my gosh.
You didn't think. I thought this is gonna be a fun story about your pink your pink pony club sewing room, but it doesn't sound like that at all. Okay.
No. I... It was probably for the best. We had a lot going on.
So... Jeez.
And the baby is... He's he's fun. He's... So I wouldn't trade him.
You finally got a good one. I hear what you're saying. Yeah. Yeah.
Well, I mean, I think he thinks he's a dinosaur, so it keeps life exciting.
He just runs around the house just banging into things and
And roaring.
And roaring. How old is he?
Two.
Look at that. That's really lovely. How old are you?
34.
Okay.
I had to think about that.
That's okay. It's part of the psychosis. You're... You don't... Don't worry.
It's all happening on schedule. It's all happening on schedule, Veronica. Don't worry about it. Tell me, is there any extended family with type one diabetes? Do you, your husband have autoimmune issues?
Other... Anything like that?
No autoimmune with me or my husband. My husband does have a younger sister who's type one. She was 17 when she was diagnosed, and my husband and I were, like, already engaged and out of the house. So, like, he was not around it at all and didn't really know anything about it other than she has diabetes.
His parents. Mom's got thyroid, so dad's celiac. Somebody's got RA.
Dad is type two.
Type two.
No thyroid? No. Think his mom
Go ahead.
Might have something thyroid going on. I can't remember. His older sister does have Hashimoto's.
Okay. I see it. Alright. Background, what kind of, genre are they? Irish, English.
English.
Yeah. I gotcha. Alright. I got the whole thing figured out. Okay.
Now now we move forward. So you have no idea what type one diabetes looks like when this hits your your kid initially. How how
Watching TV all day, drinking more6:12
do Not at all.
How do you figure it out?
Okay. This is... It was kind of a bunch of random things happening. But he he was in preschool, and the... I, at the time, was working in a public school.
And our winter breaks lined up except his teachers both got COVID. And because it was a small preschool, they just said, we'll go on winter break a week early. And so he was home... My husband worked from home. So he was just home with my husband for a week while I was finishing my last week at the school I was at.
And so he was just home watching TV all day pretty much in a lot of, like, dad's here and kind of supervising, but I'm kind of on my own. And so when I would get home, like, his behavior was just kind of just very unusual for him. He'd ask for an Oreo, I'd say, oh, we have to eat dinner first, and he'd fall to the floor crying, which seems relatively typical for a three year old, but was just very out of character for him. He was definitely drinking more, and he was daytime potty trained, but not overnight. But he was, like, peeing through diapers at night.
He was wetting the bed at nap time or, like, peeing on the floor, like, during the day, but, like, in the bathroom. Like, he, like, couldn't get to the toilet in time. So I was like, okay. All these weird things are kind of happening. The day that kind of, like, sent me over the edge, we were...
It was the Sunday before Christmas, and we went to church. And he could not sit still, like, wouldn't be quiet. He found, like like, a air vent grate on the floor and with... Look at that. His alarm's going off right now.
Oh, he's 61.
Is he at now with the...
He's at school.
He's at school? How do they how do they manage this? We'll get back to the church in a sec.
He has a brand new school nurse. Like, she just... First year being a school nurse this year. So it's been, we've been back at school. This is week two.
So it's been a little bit of a
A ride?
Ride starting back up. But so far, she's been really lovely. It's just been a lot of
Teaching.
Communication between the two of us.
Yeah. So So... So he's 61 right now. Does she know that? Is she going to get him?
Like, how does it work?
There's a there's a fifth grader at his school that also has type one, and his mom is so sweet. And she actually bought a Sugarpixel for the school nurse this year. So, she's able to see both the boys, blood sugar at the same time.
Oh, that'll make John happy. John owns Sugarpixel. He... He'll be he'll be thrilled to know Yes. That's very cool.
I also own one at home, but I did not buy one for the school nurse.
You're like, listen. I've got a line. Okay? Yeah. My line......
Send them a glucose to school, so that's in his classroom. But
Does it help? Does teachers say, oh, that's cool. It turns red, and I go, uh-oh. Or Yeah. Yeah.
He does not feel his lows at all.
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I've seen him, like, running around happy as can be on a playground, but his blood sugar was 29. Oh. You would never know that he's low. I can tell, like, his, like, eyes will get, like, a little, like, darker... Like, dark circles under his eyes, and he'll get a little paler
How she can see it in his eyes11:45
Yeah.
And sweaty, but also, like, sweaty at a playground seems normal.
Mhmm. So... Nobody wants to be pale and sweaty. That's for sure.
Yeah. Yeah. So then he gets mad because I'm like, you have to sit down and drink some juice. And he's like, but I wanna play with my friends. I'm like, well, I want a child.
I I complained about the three of you, but I'm not looking to trade any of you in. Exactly. Right. Right. My gosh.
What's his understanding of his type one?
He's got it down. He's so smart.
Yeah.
He is really, he's got a good idea of it, but also he kinda... I mean, he's seven. So he fluctuates between I wanna do this all by myself, and, I don't wanna stop playing video games, so you do this for me.
Mhmm. That sounds right. That's how I feel most of the time. Yeah. Yeah.
Okay. So wait. We're back at church. He's fiddling with the he's fiddling with the vent. Am I right?
Yeah. He was, like, banging on the vent and making all this noise. So I finally just, like, took him out and, had him... I was letting him, like, go, like, outside, like, on the sidewalk. There was, like, just, like, a tiny bit of frost on the ground, and he was kind of, like, ice skating.
Mhmm. And then he'd come back in and he'd warm up, And then he'd go back out, and this older man came up to me. And he goes, where's his coat? And I was like, he doesn't have one. We don't wear coats in the car seat.
And we, at the time, lived in an area that was more low income. And I think he thought I couldn't afford to buy him a winter coat.
Okay.
And I was like, no. No. No. He has a winter coat at home. We just don't wear coats in the car seat, so he doesn't have it with him right now.
And he goes, well, some people would say what you're doing is child abuse.
And did you say, oh
And I was like
Great. I... This is when I come to church for acceptance and understanding.
No. I just, like, looked at him. I was like, he's fine. And he goes, that's what a child abuser would say.
And I
was just like, how do you respond to that?
Well, he's not wrong. What would you... If you were abusing him, would you tell him you were abusing him? Of course not.
Like, of... No. But, like, am I supposed to say, yeah. You're right. I'm abusing him.
Like, what? Like, what response were you looking for here? So I pick... I just, like, picked him up, and I took him into the women's bathroom because that guy couldn't follow me there and sat there and cried for a minute. And then I was like, something is wrong.
Like, this is not my kid. So then on Tuesday, he would go to my mom's house all day. And when I went to pick him up, it was, like, my last day of work. The next day was sort of winter break. I think Saturday was Christmas.
And he... I got to my mom's house. It was, like, almost 05:00, and he was still sleeping. Like, he had napped from, like, noon until 05:00. I'm like, that is weird.
Like, that's not right. And when I went to get him, he peed so much. His socks were wet, and the pillowcase was wet.
Wow. That's an impressive situation.
Yeah. I was like,
this is so normal. With it. He was
Yeah. And I was like, we... I was like, something's wrong. And I was like, mom, I was like, I think he has diabetes. And she's like, what?
Like, she was like, this is crazy.
Like, he's either that or a child abuser. So something's happening.
Something's wrong.
How did you know that? How did you think that?
A due date group, and a MyChart message15:06
I was in a, like, mom, like, due date group with all kids that were born in July 2019. And one of the moms had posted, like, two weeks before, hey. My kid's peeing a lot. Do you think he has diabetes? And I just remember thinking that post was so stupid because why are you not talking to your doctor?
Mhmm. Like, if you think your kids has diabetes, what is Facebook group gonna do for you?
Yeah. It turns out a lot. But... Yeah. Yeah.
And so that's how I learned that that was a symptom. And so I I sent a MyChart message to his doctor, and his doctor called me before the office even opened the next day. And they're like, hey. Come right now.
Okay. And that gets you. Yeah. That'll make you think twice. You're like, uh-oh.
I packed him up in the car, and I took... I was... I had, his one year old brother with me too. And we drive to the doctor, and the whole way there, I'm like, Veronica, you're an idiot. Like, every three year old has bad behavior.
Every three year old, what's the bed? Like, you are overreacting. Like, this is dumb. Mhmm. And you're gonna get to the doctor, and they're gonna be like, he's acting like a three year old.
And they tested his urine, and I don't know what units they used to test urine. But whatever it was, his glucose... There shouldn't be any glucose in your urine, and his was over 1,000. Well, then,
there you go.
Yeah. So they're like, well, we're gonna prick his finger. And so they did that, and it was $5.69. So they're like, okay. He has diabetes.
You're gonna have to go to the hospital. He's like, but we're gonna draw his blood here. And so they drew his blood in his pediatrician's office, and they were able to rush the labs at the hospital. So we were able to go home, and they're like, they will call you in, like, the next four hours and let you know where to go. Gosh.
So we went home. We were able to pack a bag. They told us to expect to be there a couple days. And luckily, his labs all came back fine. So we just went straight to endocrinology.
He didn't need any, like, ICU time or anything.
After the shock wears off17:24
How do you, I mean, after the shock wears off, the first the first wave of... There's a number of waves of shock to come. But after the first one wears off and you... You're bearing down, what do you do? You get somebody over to watch the baby?
You get the husband together? We do the whole I
ended up calling our, the... We had used an in home day care for the baby. And so I called her, and I was like, hey. I wasn't supposed to bring him in today, but I'm gonna need to bring him the next couple days, and told her what was going on. And she was super understanding.
So I dropped the baby off at her house, and then I actually posted in a mom's group on Facebook, and I was like, hey. My three year old was just diagnosed, and, like, what do I do?
Were... Did you feel did you feel like a did you feel like a heel then because you thought of the other woman? Why would you possibly put this in a Facebook group? Also Well
how can we But she was like, do you think my kid has diabetes? And I'm like, but that's a question for a doctor. Nobody can diagnose diabetes over Facebook.
Yeah. Sure. I mean, I could.
Not like, hey. I just got a diagnosis and, like, where are my resources?
I hear you. Hey. How come you didn't use the guy from church to babysit? He sounds very protective. He would have been fantastic.
We
went back to that church ever again. He actually... So I... My husband didn't know what was happening because he was... I didn't have my phone with me, and he was in church with our other son.
And, when he came out after church was over, he looked at me. He's like, what the heck just happened? And I had told him, and he walked back in and told the priest what happened. And he goes, yeah. I know.
The guy came up and told me first.
We've already called the state police on you, just so you know.
I'm like, oh my god. Yeah. I'm like, thankfully, we did not go there very often, so nobody knew who we were.
That's really fun. Okay. You're in the hospital now. The weight of it is coming together. What what are people saying to you?
How are you putting a plan together?
Yeah. It it was interesting. We had we had a really great diabetic educator. If he was wonderful teaching us all the things and people told me, like, they're, like, the three things... Like, on Facebook.
They're, like, the three things you need to do is join the Juice Box Facebook group, get an Omnipod, and get a Dexcom. And I said, okay. I'll work on that.
I'm on it.
So we did leave the hospital with the Dexcom, but they wouldn't give us a pump right away, which was fine, at that point. Hindsight's twenty twenty. But, he... We we had good education. My mom is a nurse.
My... I had cousins in town that were nurses, but even them, like, they were hosting Christmas dinner and they were like, is he allowed to eat this? And I'm like, aren't you a pediatric nurse? Like, shouldn't you know this information? But, no, nobody knows anything.
Well, Veronica, that's why people go to Facebook and ask other people questions sometimes.
Yeah. Mhmm. So family was... We had good supportive family. I do remember they sent a child life specialist in, And I had specifically asked her, like, for a book for him to kind of explain what was going on to him.
And she was like, oh, he doesn't understand. Like, he's too young to know what's going on. And I'm like...
She could've she could've just said we don't have free. We we don't have books. It would have been an easier answer. What is a child life
very aware that I'm stabbing him with needles several times a day.
Veronica, what the hell is a child life specialist?
So
I think when some people say AI is gonna steal my jobs, I think you guys should maybe consider that your job was pretend to begin with. But... Okay. What what is a child life specialist?
Yeah. They are... They they work in children's hospitals and help bring, they... I don't... They're like Santa Claus.
I don't know. They bring... They brought us, like, Play Doh and coloring books.
Okay. Alright. I'm good. Thanks. Keep moving.
Yeah.
Santa Claus, I guess. I think they help bring, like, educational materials to kids to help them understand a new diagnosis
That sounds nice.
And, like, help keep them calm.
I'm sorry for making you fun of it.
That sounds nice. It... It's nice, but it... It's something.
It's something. Can I get a book? No. Play Doh. I I They give
us a lot of Play Doh.
Your kid your kid don't understand anything anyway. Don't worry about
it. Yeah.
Oh, this is good and great. Hey. Are you married to a guy that goes to my church by any chance?
I know.
You got the same vibe. I just want to say.
But... Yeah. Okay. But he took it really well. He's...
Like, I have a video of him, like... I think it's, like, four days after diagnosis, and he's sitting there and he's describing all the parts of the pen needle and, like, how did I give himself a shot. He's he's really smart little boy.
Yeah. Well, that's awesome. Did you find a book for him ever, or did you find you didn't need it?
I wrote my own book.
Oh, well, there you go. That's... Did that happen during I didn't
have time to wait.
Did that did that happen during special time in your pink shiny room, or was it before that?
That was before I got my sewing room. We we ended up moving. We were living in Ohio when he was diagnosed. We're in Missouri now. Okay.
So sewing room didn't happen till we moved.
Nice. How how was it having the CGM right away? And what did you mean when you said hindsight's twenty twenty when you said it was okay if you leave him without a pump? Oh,
so his car ratio when we came home from the hospital was one to a 100.
So Not a lot of...
Dosing him for anything
Yeah.
Was a nightmare. Mhmm. He was at 300 constantly. And at the time, I also didn't know how to turn off the Dexcom high alarm, so his preschool really loved us because it just went off every five minutes the whole day he was there.
So what? I... You know what? Who cares?
They were actually...
They were so wonderful.
They did so good.
Yeah. Deal with it.
Yeah. Just a little bit. He was just there half day. They didn't have any... Like, there's no medical staff there.
It's just a little tiny church preschool. Different church than the one we were at.
Different.
But they were really wonderful about it. But they, we only packed, like, low carb snacks for him until he got a pump. Mhmm. So they didn't ever have to dose him for anything, and they just gave him fruit snacks if he ever went low. But he was, like, over 300 constantly those first five months.
Low carb snacks until the pump23:45
First five months. And and why do you think that is? Just because it was so... It was too hard....
Got him a pump.
Because you couldn't give him... So... Okay.
Yeah. We... Even when they approved his pump, they only approved him to go on Omnipod if he was wearing a g seven because he was using too little insulin to use automated mode.
Oh, okay. So that... Well, why does... I don't understand. Why would...
If you weren't gonna use automated mode, what does it matter what CGM you had?
Oh, it was before g seven and Omnipod were integrated. So they couldn't talk to each other. So they didn't want us to accidentally put him in automated mode with the g six.
They thought you were gonna accidentally put it into automation?
Yeah. So this is what I've decided about that hospital system.
Go ahead, Veronica. I'm I'm waiting to hear what
you decided.... One... There's only one children's hospital that was treat... Or, like, treating pediatric type ones within, like, a two hour radius of us. And I think they saw a lot of people that maybe didn't have a lot of education, and so they had a lot of safeguards in place to make sure kids stay...
Didn't go low.
It's a generous interpretation.
When they... You know, like, I think they just didn't encounter a lot of parents like my husband and myself where we, like, spent the time to research and learn and figure out what was gonna work best for him. So when we would challenge them on, like, hey. Like, I think his a one c is too high, and I, like, can't dose him the way I wanna dose him for things, they didn't wanna hear it because they didn't want him to go low.
I think that's a very generous interpretation. I appreciate how kind you are. I think that everybody
I tried.
I I think that everybody's brain says the first thing that it thinks, and they go, that must be right. And then then they just say it out loud. So, I mean, here's here's a g six or a g seven. Who cares? Here's the Omnipod five.
Keep it in manual. And after his insulin needs go up enough, we'll move it into automation. Mhmm. And then here's the button.
Don't touch up having a growth spurt really soon after. So within a month of getting a pump, we were able to go and automate it.
I... I'm just telling you. Everybody thinks they know something. I'm I'm one of those people, by the way. Every time I think something, I think I'm right too.
Guess what? We're all probably wrong. So, you know, then you start making rules, then kids can't get CGMs. Except, like, what if your insurance would have said what if your insurance would have said, hey. You can have a g six or you...
But you can't have a g seven. Then... And and Yeah. Now your kid's blood sugar stays at 300 all the time because you're not able to to bolus less. What about...
It's just it's just... I don't know.
Yeah. And nobody ever told me about, like, diluted insulin. Like, that wasn't a thing.
No. I mean, you're not getting enough....
About that until it was too late at that point by the time I learned about it. So there were things like, you know, if one of my other boys would get diagnosed and goes through something similar that I would be like, no. We're doing x, y, and z. But...
I think your story's taken away all my momentum. I... Usually, I get angry. This one just, I'm just going, you know what? It's...
It... We're all... We're finished. It's over. I just...
I... Nobody can think or they... Everyone's making rules for no reason, and then they think it's a rule for the next person. Person. And, like Yeah.
I can't. I can't. But we're in a
new hospital system now, and they're... They listen better.
Hey, Veronica. I'm having a meltdown. Like, you're worried about... You're telling your story. I...
I'm I'm losing faith in humanity. Well, like, before your eyes, you're like, wait.
I have a cool tip, though.
Okay.
A tour bus of an endo practice27:24
His endo at our new hospital system, they have, like, a Taylor Swift sized, like, tour bus. So I don't have to take him downtown to the hospital. This tour bus just comes to a school for all his appointments.
I mean And that's so cool. It's nice. Yeah. I mean, I like that. Okay.
But is the person showing up telling you you can't have a CGM because some
No. She's wonderful. She's really wonderful.
The bus lady's good, you're saying to me.
Yes. Bus lady's great.
I'd like to live on a bus for a couple of weeks. You know I mean?
I would not.
No. Just like a tour... Like, when guys... When people go on tour... You know what I mean?
Like, with a band?
Yeah. Well, I don't want the band there. It's just me. I I I think I'm just trying to get away. I just wanna get away from people for a couple of weeks.
Maybe it doesn't need to be on a bus. I guess I can go out in my backyard for a couple of weeks if I wanted to and just stand there. But It's...
No. It's too hot for that.
Yeah. The humidity It's
a 103 here today.
Is it really?
Yeah.
The humidity has been terrible this year. Really ruined. It ruined the season. Like, this... It's raining all...
I mean, I guess grass and everything has to grow. I'm with you. But, like, there's been a lot of rain.
It's not growing in a 103.
I know. Right? It just gets sad and wilts. Yeah. Yeah.
Okay. Well, listen. Everything's fine. Don't worry about it.
It'll all work out.
Yeah. Rolling blackouts are next. You'll be... Don't worry. When that happens, you just go, oh, it's okay.
I'm sure someone's taking care of it. Guess what? They're not. Okay? They're not.
They're not. They're
not. Buy a generator.
I'm so close. I'm so close to digging a bunker and putting guns in it. I could feel it. I'm like, I'm really, like, starting to slide off the edge here. I...
Sorry. I'm okay. Don't don't worry about me, everybody. Everything's gonna be fine.
Are we okay?
I don't know, Veronica. Like, your story just... I don't know how many times I'm supposed to listen to people get let down by the people who told, don't worry. This person will handle it for you before I before I just gotta tell you that that's my expectation. And then when it go when it goes right, that's the anomaly.
I listened to the last two days episodes just kind of preparing myself for today. And I was telling I was telling my coworker, I'm like, I am not as interesting as these people.
Oh, did you... You... Would you listen to the one... The guy with the, where I read the Hippocratic Oath? Did you listen to that one?
Yes. Yeah.
Yes. And then the the single mom the day before.
Oh. Oh. Yeah. Yeah. But I
was like,
But this guy... If you didn't hear the one... The Hippocratic Wuth one, people, go back.
I did. I listened to that this morning.
I know, Veronica, I'm talking to the people. Go back. Right? Because this guy's, like, blood sugar's high, his doctor says to him, you probably have HIV. And, like...
And then fights with him for a while about it.
It's just... It's Like, six months.
Yeah. Yeah. Yeah. No. No.
It's crazy. And then when he gets to the hospital, like, two different medical professionals say to him, hey. So I see he got type one diabetes. That's gonna be tough. And then walk out of a room and just leave him.
It's... Oh. Oh. Oh. Oh.
Yeah. Okay. Yeah. Yeah. Good luck.
I'm just... I I I I... I'm trying to assume... I'm sorry. I'm stammering a lot.
I'm trying to assume that people wanna come on the podcast to tell these stories, and that's why there's more of them. But at the same time, like, I don't know. There are people who come on and tell nice stories, and they're like, oh, I went here, they told me a thing, and I figured it out. It was okay. And everything...
They're just few and far between normally. And I don't know. Either that's real or it's not. But
Well, but it's like like I was telling my coworker earlier. I'm like, listened to those two episodes, and I'm like, I'm not that interesting. I don't have anything interesting to say.
You were accosted.
So maybe that's it.
You were accosted at a church by the old man from Home Alone. That's fantastic right off the bat. And, you know, you got good stuff. You haven't bad mouthed your husband yet, but we'll get to it.
No. He's good.
Oh, okay. Alright.
Alright. I've got a good one. Although my son will only let me do all of the device changes, so if a pump fails at two in the morning, I have to get woken up to change it.
He only lets her change the devices31:25
He doesn't trust the husband or the husband has paid him money to say that I want mom to do it? Which do you think is the
second gotta be the second one.
Yeah. For sure. That's what I I...
Because he'll let he'll let dad do it if I'm not home, which is only on Sunday nights when I'm gone for line dancing. But...
I I mean, I'm looking back on my time now and realizing I should have told Arden, listen. Here's $20. Tell mom you don't trust me. You need her to...
Yeah. I'm the only one that can change his his devices. I'm not sure why, but he did draw insulin out of the vial for the first time ever this week.
Oh, cool.
Like, without me helping. So I'm like, ugh. He goes, mom, you look tired today. I'm like, I'm exhausted.
He's he's six. Right?
He he just turned seven.
He just turned seven. Happy birthday. And your your seven year old's looking at you making an assessment and going, give give me the needle. I'll do less damage than you're gonna do. Let me have that laid out.
Yeah. We
we went to the we went to the grocery store the other day and bought, oh my gosh, probably enough groceries for a month. And he was, like, obsessing over the amount of money we spent on the groceries. And the next day, he's like, mom, I'm so sorry we spent so much money on groceries. And I'm like, dude, don't worry about the grocery money.
Is he anxious? Yeah. Are you? Oh, yeah. Oh, yeah.
Oh, yeah. Oh, oh, yeah.
Just a little.
Yeah. You know, before the babies or or just after them?
Always, but it's definitely worse since having kids. And especially since I had that, like, my son has to have diabetes, and then he did Mhmm. Did have diabetes. Mhmm. That really amped it up.
You, you worried about them all the time?
Not medicated. You're... Oh, yeah.
Not medicated. Hey. The lady the other day...
Not medicated.
She was... I... Oh, no. The woman I interviewed the other day, she's... I said, you're doing really great.
She goes, I... I'm on a cocktail. And I was like, oh, okay. She she said it was well No. Wellbutrin and something else, and they call it well off or something like that.
I forgot what she said. It was funny the way she said it. Yeah.
Yeah. I did I did try Wellbutrin even before the kids were in the picture, but, that was not for me.
No. Have you tried, lately, I've been hearing people say they're giving... I can't think of the name of it. They're giving this one at, like, a super low dose, and it's just kinda taken the edge off of people. Mhmm.
It's not a bad...
I was on something. I don't even know what it was anymore. And then when I... In between my second and third. And then it was safe to be on during pregnancy, but it was making me have morning sickness, so I stopped.
And... Did your anxiety come while you were pregnant?
Well, I don't think it ever left because...
Sure. Like, Scott, the medicine was not strong enough.
So how was diagnosed in December '20... What year? '22. Mhmm. And I went off of it in June '23.
And you're like, this is no different? I feel the same right now as I did before?
Think we we were, like, six months into a diabetes diagnosis with a three year old, and I was like, they're... I will never not be anxious again.
Veronica, all day long about everything, some things comes and goes, What's the level of it? Describe describe it to me.
I'm anxious about everything. Yeah. I also, I didn't describe my job well to you earlier. So I work at a school, but I'm a behavior analyst. So we're a small school that takes kids with extreme behavior.
So at any given moment, I could have a desk thrown at me, a chair flipped over, somebody's trying to punch me. So, you know, just kinda gotta live on the edge.
Was that anxiety, or is that just reality?
That's reality. That happens every day
in school. It doesn't leave you when you leave that scenario. You don't you don't feel safer other places?
I mean, I'm safe if I'm in my sewing room.
Did you not hear about the sparkly pink room, Scott? That's where I stay safe. Wait a minute. Why how much is this job must pay you a $500,000 a year where you're letting people turn to death? No?
Why are you doing it? Why are you being so nice to the world?
I love it.
You do?
I I cannot sit at a desk all day.
Okay.
Actually, just sitting here... Like, I know we're having a conversation, but this is hard for me just to sit still. I I need to be moving.
You don't drink. Right? You're you're not quieting the voices other ways or anything like that? No. Good.
I don't
think that's gonna good. I enjoy a drink on occasion, but Yep.
No. But not three before dinner is my point.
No way. Okay.
Good. Good.
I had a glass of wine. Actually, I had two glasses of wine with dinner this week and that... My husband's like, who are you?
I've never had a glass of wine in my life. I don't know if I've tried... I mean, I'm sure I've had a sip of it some... At some point or another, but...
Have.
You must have. Yeah. Did you, like, you were really nice to him and everything? And he's like, oh, this will be okay. Yeah.
I I think I just seemed more fun when I was 18.
Were you hiding your anxiety from him?
I don't think so.
No. He was dumbfounded by your beauty. Is that what you're telling me? He couldn't he couldn't... Yeah.
He couldn't think. That's what happens.
Yeah.
He gets stupid right away. You're like, I don't know. I think it'll be fine. And then later, people are like, why'd you do that? I'm like, I I don't I don't know.
I didn't notice. What about him has, had... Did he trick you about?
I don't know. I don't know. I I... This is... I say it all the time.
I really kinda hit the jackpot as far as, like, in laws, his his parents, his sisters. They're
Everybody's good.
They're really wonderful. So... And I know, like... I don't know. We don't...
It's like any family. Like, people don't always get along with every little aspect, but I know I can call them at any time, and they're gonna be there.
You had a good group. And you couldn't think of one bad thing to say about him? It's awesome.
Maybe he doesn't do the dishes enough.
Really? I just did the dishes, and I have to tell you there's no way anyone's gonna thank me
for If he hears this, he'll laugh because, I almost never do the dishes. Oh,
you just need him to do it because you don't wanna do it. Yeah. I see. I went on a little Go ahead.
Change all the medical devices. He can do the dishes.
I I... Paper plates make me so upset that... I know that sounds strange. I don't like the idea of paper plates. No.
No. So my wife sometimes is like, just get some paper plates in case I don't wanna, like, do the dishes. I'm like, I do the dishes. What do you even care? I was like, the paper plates make me anxious.
I... Not anxious. Upset. I don't like I don't like the idea of paper plates. Listen.
This isn't the time for that conversation. But nobody cares that the paper plates make me upset. They go, well, we want them. And I'm like, but I don't want them. And I...
And it... Anyway, nobody cares about me, I think is what I'm here to say. You're making me so sad.
No. Don't be sad.
You're my last recording before I take a break for the weekend. I'm taking a long weekend. My wife and I were taking a we're taking a long weekend. And you're my
Well, I've, I... See, I can't let people be sad, so then I have to think of happy things to tell them.
Jack this back up a little bit. This this kid of yours, he's doing well. He's on automation. Things are okay. He sounds like he's smart.
He's figuring things out. How did you figure out brilliant. What did they... I mean, is this gonna be one of those stories where you tell me, like, that you learn stuff from the podcast, or did you learn it somewhere else? Like, how did you figure out how to manage The podcast for sure.
Where she actually learned it39:28
Okay. Very nice. See, a one c right now?
We did go to the children with diabetes conference
Did you?
The year he was diagnosed, and that was really wonderful.
You enjoy you enjoy the camaraderie?
I do. Yeah. And I also really enjoy Disney World.
Yeah. You just went on vacation. I hear what you're saying. Yeah. What's his a one c today?
His last one was 6 point 2, but he was really mad because the last three before that were 5 point 8 5.9.
Sounds like somebody's got mommy's, problem. You know what I mean? Yeah. Okay. And variability, we don't see too many lows.
We don't see too many big spikes that last too long.
No. He's super variable. Okay. Both... So he had the same nurse the last two years, and this is the brand new school nurse this year.
But... So she's still getting to know him, but she's even made this comment too that he is so incredibly sensitive to insulin, and that he's really hard to keep in range.
How how, how much does he weigh?
Like, seventy pounds.
Okay.
Is he... He's really big for his age. He's actually almost as tall as me.
Is he super active?
Yeah. He's very active. He plays tennis. There's a lot of running in that too. But
Why does it...
Tennis down to a science.
Okay. But why do you......
Keep him steady there. But...
Why do you think he's bouncing around school?
He... Well, I don't really know, honestly. Well, first of all, he loves cereal. I can't get the kid to stop eating cereal for breakfast, and I'm not at home when he eats breakfast. So I have no control over that.
You could not buy cereal. I just wanna point out.
I I have been vetoed.
By by the... I
get outvoted a lot.
By the by the men by the men group?
By the men in the house.
And the dog.
And the dog.
Wait. There's four boys and a dog and then you and your anxiety. Do we count your anxiety as a person? We can. Right?
So it's you and your anxiety against that dog and those four boys.
Yeah. Ugh. The dog... I tried to keep him off the couch, and I just... I gave up this week.
He can just sleep on the couch now.
It's going sideways. Yeah. Probably...
He's too big. Probably... The dog weighs more than me. I'm like, I'm over it.
You're just giving stuff away left to right. You're like, cereal is bad. I take it. I don't care. The dog is ruining the whatever.
Is it is it... I mean, listen. You've been at this a few years now. Is it overwhelming still? No.
Okay. How would you describe it?
I think it's just, like, the new normal.
You don't find it to be overwhelming?
No. It's it's just it just is what it is. I think there's just so much variability in between, like, growth hormones and... You know? Like, this week at school, they're not going outside for recess because it's a 103 degrees outside, so it's too hot.
A hundred and three degrees, no recess42:50
Mhmm. So when... Like, last week, they're going outside for recess, and they're playing... Apparently, he's playing kickball this year, so they're running a ton. And so last week, he went low every single day after recess.
And I was, like, just about to tell the nurse, hey. Let's pull back his lunch, dosing so that he isn't going low. And then now they're not going outside, and he's sitting and playing Legos.
Okay. So these little these little variables are are not getting addressed in a timely way.
And sometimes you can give him one gummy bear, and he continues to drop. Like, it would... It's like nothing even happened. And sometimes you give him one gummy bear, and he shoots up to 300.
You don't see any correlation between how much insulin's on board or how much activity he's had prior to that situation?
No. And I... It... Like, I analyze graphs and data for, like, half my living, so I watch it meticulously. And it's...
He's just super sensitive.
You ever try asking AI what it sees? Like, throwing some graphs.
Actually, I use AI a lot at work, but I ask it, like... Sometimes I'll ask it to help me calculate if I'm doing, like, an extended bolus and if he's eating something really fatty. Mhmm.
But Never ask it.
Never ask everything.
How fast the chair moves when it's thrown by a seven year old. So how much time do I have to get out of the way? Has chair ever really been thrown
at you? Are 18 throwing chairs at me.
Oh, have you ever had a a chair thrown at you? You have?
Oh, yes. Oh my gosh. At least once a week.
No kidding.
I wasn't joking.
Why are the chairs not chained to something? Seriously. Can you bolt them to the floor?
I mean, it just depends on the student.
Oh, yeah. Okay. Do you always know which ones are gonna
Triggier student right now? Yeah. Yeah. They all, like, have different kind of behaviors. My tricky one right now, he just flips his desk over.
So, generally, I can just move out of the way, and then he generally almost immediately just picks it back up himself. So I'm like, okay. If they're throwing their chair a lot, we have switched to those, like, desks that have, like, the chair attached to the desk so they're
hard to heavy. Make them too heavy to throw.
Yeah. Jesus. Yeah. Or we switched, like, if they're, like, flipping desks, like, a lot in a way that they're trying to hurt people, not just, like, I'm mad, so I'm flipping a desk over. Mhmm.
We switched to those, like, really big, like, heavy metal desks that nobody can flip over.
Oh my gosh. That's horrifying. And there's, like, four... 40... Well, you you say, oh, I say horrifying.
There's there's, like, 40 kids in the school at one time?
Yeah. I think there's about that many right now. Yeah.
Jeez. And they all are on some level, like, in that vein?
Yeah. Yeah. So we're like a... It's considered a purchase of service. So when a school district says, like, we can't give this student a good education because of...
We... They can't meet the behavior needs, whether that's they're not trained in how to handle the behavior or they can't staff the student, to keep both the student, the staff, and the other kids at the school safe, they pay to send them to us.
Wow. Jeez. Imagine your kid is such an issue that the school district's like, we're gonna pay somebody to to take him out of here, so we're not breaking any laws, and we can get rid of the kid.
We actually just had a student. And, like, because we're so small, we don't have a nurse on staff. We have, like, some staff that are med trained, but they can just, like, give a medication.
Mhmm.
But they can't, you know, like, they can't manage diabetes or anything like that. But we actually did just have a student diagnosed with type one, and the school district is paying for him to have a nurse here one on one all day.
Okay. I'm gonna go through and ask you a couple of quick questions. Okay?
Okay.
You said in your little intake writing that you said that hearing other parents' stories helped you very much early on. Can you tell me, like, recant a story and how it impacted you?
Everybody complains the same way47:29
Yeah. I think it was just, I don't know a specific story off the bat, but I feel like a lot of episodes of the podcast, it's adults talking about their experience with type one or parents of older kids. They're... When Hal was diagnosed, you know, he was three, and they're just... It was hard to find an episode with other really little kids.
So when I would find one, it was nice to hear, like, okay. They're doing okay now. Or, hey. Like, we use diluted insulin and, like, things that helped them, like microdosing or, I don't know, different snack ideas that were helpful when the kids were little.
So you just get ideas or some confidence seeing that people have been where you are and they've moved forward, they're okay.
Yeah.
I laughed a little when you started talking because everyone complains the same way. If they're adults that live with type one, they go, this show is just nothing but parents. And if you're a parent of a kid with a little kid, you're like, oh, just no episodes for me. And then the other ones are like, oh my god. Everybody I...
Every time I turn on, it's an adult with diabetes. Just wanna hear somebody who's parenting a kid in their teens, and I'm like, oh, okay. I I... But No. I get that.
I... It's it's funny
how works. For yourself, not for Yeah. The whole audience.
I I I take your point. It's... So... Okay. So hearing stories is is that kind of, like, comfort.
That I I appreciate knowing that. I'm just gonna keep going through your thing here because your your son wants to be a social media influencer?
Oh, yeah. He has a TikTok. His goal... He wants 10,000 followers because he knows that he can make money, and he just really likes to save money.
How much money does he think he's gonna make?
I... He... I don't think he really even has, like, the grasp of Money? Money. Like, he he knows, like, what's a lot and what's a little and that things cost money, but I don't think he understands, like, the work that goes into social media.
I saw
this It's hard.
I saw the saddest thing the other day. So there's this young kid. He never puts himself on... I'd never seen this before. Just popped in front of me.
Right?
Nope. I know who you're talking about.
Oh my god. If I say what I say and you tell me it's what you were thinking of, my head's gonna explode. But I I guess he plays some sort of a game, and he videos the game. And then he gets on to make an announcement that his parents are getting divorced. They can't make the videos anyway, and he's crying, and he's just...
Just abs... Oh, hold on a second. Can you hear that?
Yes.
Oh, you won't be able to hear it much longer when I get into my new recording studio. And he's crying. My... I'm not gonna be able to do this anymore. It's gonna be too hard.
My family's, like, falling apart. Like... And you can hear in his voice, he's gotta be, like, nine, 10 years old. And all I could think was, and this is between you and Jesus, you can do whatever you want for. Like, I thought, this is not good.
Like, this kid shouldn't be doing this. You know what I mean? Like, he's built up some sort of a... An online, I don't know, presence, I guess, such that he thinks that people know who he is and that he feels responsible to them to put up videos of him playing this dumb game or whatever. And I'm just like, this is all wrong.
Like, this this isn't right at all.
Cal has a TikTok, but he does not get on TikTok. He does not post anything. He will just be, like, playing tennis and being like, you should film and make a TikTok out of this, and then that's what it is.
Oh, so you have a TikTok?
Yes. It's mine. But it's just... I told him it's it's all his diabetes stuff. So it's just...
It blowing
off?... Money. He's got, like, 3,500 followers.
So Oh.
It's not small, but, I mean, it's not
It's not big.
Tiny, but it's not Yeah. It's not making money.
It's not making money. It's not going to, by the way. No. It will. Yeah.
Actually, he did just, he did just get
The creator program.
Reached out.
You serious?
To pay him.
A company reached TikTok. But... Mhmm. Is it... You don't have tell me what company, but is it, like, a device manufacturer or something like that?
It's a, like, a sharps, waste company.
Are you serious? What did they... Will you please tell me how much they offered him to make the video?
$50.
$50.
Yeah. Did you tell him?
What did you tell him?
Pretty small, but, you know, it... He's excited about it. So...
I'm sure he is. I mean, that part's sweet. I'm not gonna make you feel bad about that part. But $50, stop it. That's the plan, by the way.
That's what they...
That's nothing.
Yeah. Well... No. No. No.
No. No. No. Listen. I'm gonna...
I'll let you all in on a secret. Here's what they're thinking. They're thinking you're all desperate and you wanna get involved in this. And you'll take any offer to make a video because you think it's gonna lead to something else, but the truth is it's not going to with the fine exception of a few people who are gonna get paid some reasonable amount of money. And so they're out there offering people $50,100 dollars, $200, go make a video, blah blah blah.
Off their budget, it's nothing. Right? They're like $50. They don't care. And if your kid drives three people to buy a sharps container, well, then they're...
They made money. And if they didn't, they Exactly. It's... It... No.
It's such a scam. Like, it's a real scam.
It really is.
Yeah. TikTok just put down... TikTok just made it harder for for people to make money on TikTok just from views. So now it's all getting pushed onto the companies to make those kinds of deals, but they're all gonna do bare bones offers. They're not gonna offer you anything.
So the structure the structure
And TikTok is very strict. Like, they... Hal cannot be the one making the advertisement. It has to be me because they don't let children advertise anything.
Well, that's... Makes sense. So... And... But my point is this is that, like, it the the structure is backwards now.
Like, it used to be if you made enough views, then someone would pay you because they were selling ads on your views. But now it's you go kill yourself, make the views. You don't get anything for that really. And you have to go find a third party willing to pay you, but those people are barely gonna pay you anything. So you do all of the work, and all of the risk gets put on you.
And if there's if there's reward, you will never be compensated equal to the amount of reward that somebody gets. So it's just... Absolutely. The paradigm's completely broken. Like, everyone's hustling for for brand deals now.
And trust me, that's not gonna last much longer because if... This is just my opinion. And and and maybe I'll be wrong, and then I'll come back and say I'm wrong. I don't think those views are valuable to those companies. I think they just hope they are.
And I think that one day in the next twelve to twenty four months, they're all gonna realize that they've been spending money in all this and it's not paying them back, then they're gonna stop and they're gonna go back to what they used to do. So I think this whole experiment is about halfway through right now. And I talked to a lot of these people. They are not seeing... They can't quantify what they're seeing, and whatever they're seeing, it isn't big enough.
The juice is not gonna be worth the squeeze at some point is what I'm telling you. So this is a moment Absolutely. This is a moment in time, and it's gonna fade. Nevertheless, we'll see what happens. I'll still be here.
I've been doing this for a long time. So, but
Oh, no.
You know, I'm not going anywhere, Veronica. No. I I do wish a guy in the church would yell at
computer is dinging at me.
What's wrong? What's it saying to you?
Wants me to plug it in.
Well, that's a good idea. Can you plug it in? Well,
I'll have to travel to do that, but I don't think anybody's in the building right now.
I'm just saying if Veronica disappears, then the podcast is over. You know what happened. Yeah. I'm gonna ask another question while you're walking. Go
for it.
Alright. Your son's kindergarten science fair project led to you creating an all natural adhesive remover?
Yeah.
What?
The adhesive remover project55:45
So, he only lets us take devices off if we use some sort of adhesive remover spray.
Okay.
And so he wanted to do the science fair in kindergarten, and he was trying to think of what we should do. And he wanted to do something diabetes related, and so I don't even know how we came up with let's make a new adhesive remover but using all natural ingredients. So we looked up the adhesive remover that he uses regularly and just kind of googled what all natural alternatives would be to those ingredients and then emailed a couple companies to see if we could get ahold of those products.
Okay.
And there was a company in Italy that thought that was a really cool project. So they agreed to help, and they sent us over a whole bunch of samples of their products. We mixed it together. He made a product and then got third place in the science fair.
Third place. Nice.
Yeah. I bet So then
Did you get $50 for that?
No. You got nothing.
You got nothing.
I got him ice cream. But then, we emailed the company to say, like, thank you, and he got third place. And they said, that's cool. Let's make this real. Oh.
So they worked for a while on getting it into production, and they got to the point where we got a final product, and then we started talking about packaging. And then communication kind of stalled a lot, and I don't know. We haven't heard from them in months.
They realized that they can sell it without you and that they don't have to cut you in. Is that about what's... Yeah. Has...
Probably.
That's about what they figured out. Yeah. Yeah. Well, that's nice
and sucks.... A cousin that is a a biochemist, so he's reverse engineering it now.
Oh, no kidding. Your cousin's a biochemist? My husband's cousin. Yeah. No kidding.
I'm not. I I didn't really go to college or anything.
It's too much science for me.
I don't know anything about anything like that. I'm barely, barely able to do this. I, I I... Biochemistry. Jesus.
That sounds like a that sounds like a long four years in college to me. Oh, I wish you a ton of success. I hope it goes well.
Thank you.
Yeah. Do you... You'd be out there selling, like... What is the idea? You put it on and it just kinda, like, softens up the glue and it kinda peels off nicely?
Yeah. It worked well, and it didn't... You know, like, when you, like, peel off and there's all that residue, there's no residue in it when you use it.
Nice. You don't just tear it off and tell him to shut up.
Oh, he screams at me.
I'm sorry. I was
And then he's he's so fair. Like, he's blonde hair, blue eyes. He's so fair, and his, like, little, like, legs and arms are red for two days.
Yeah. I mean, it's not it's not fun. But, also, I was born in a different time than you. I was just like, it'll sting for a while, and you'll be okay. Just live through it.
So... Okay. What else? I showed with anxiety, your parents' stories that you put a lot in here. I appreciate that.
Science fair, how wants to make social media, everything because I I think I've been through everything that you wrote to me. So that's that's good. I feel like we did that. Is there anything that you wanna tell people that you haven't told them? Is there something that we didn't get to or anything you'd like to say?
I wanna make sure I don't miss anything.
No. I don't think so. Covered a lot.
We did okay? Well, we've been talking for a while. Is this outside of your, comfort zone, or were you okay with this?
No. It's outside of my comfort zone for sure.
Why'd you do it then?
My officemate is smiling at me now. I think just because, you know, when Hal was first diagnosed, it was helpful to hear other parents of young kids talking about it.
Thank you. It's a nice thing. So you wanna do it for somebody else?
Yeah.
I appreciate that very much. You have any tips or tricks? Anything you've learned along the way that you think they should know?
Find a community.
Mhmm.
We we live, like, thirty minutes outside of the city. And so there's, like... There's one other boy at his school with type one, but he's a couple years older, so they aren't, like, really running in the same circle. So we... When we moved here two years ago, I really, like, joined some, like, parents of t one d in the cities, like, Facebook groups and trying to find other families.
Finding other families, and camp1:00:35
And through that, there wasn't a a day camp for type ones in our area. So because we, were able to meet some other moms of kids his age, we were able to get a day camp for them for the summer. So they... He got to go to camp this summer, which was really fun.
Very nice.
And just having that community for him even, like, even being this young was... It definitely changed his outlook on it. He went from saying, I hate diabetes, and I wish I didn't have to do this, like, multiple times a week to, like, this is kinda cool. Alright. This is fun.
Feeling better about it. Yeah. Yeah. After meeting more people. I've had, I've been lucky enough the last couple of years to work with Camp Sweeney where they, you know...
Either sometimes we get people to donate space. I've had advertisers pay for slots. I've had, Camp Sweeney's donated space, like, whatever. And I get to give away, you know, trips to Camp Sweeney for kids. And then while they're at camp, at some point, they make, like, a little thank you video and put it online, which is lovely and not necessary.
But this is the time of year where I get to see four, five, six kids, like, just having the greatest time at camp. And they're like, thank you for sending me. And I'm like, I always think, like, I didn't really do it, but you're welcome. And, I'm glad that the podcast facilitated it somehow. But, the...
Some of them will write letters later, and they very much mimic what you just said. Yeah. Yeah. I I I can't say enough good things about just finding other people where you can feel understood and normal and not have to think about it, at the same time not have to feel like your situation is so different.
Yeah. And, like, they were the youngest age group at the camp, so they saw all the older kids exchanging phone numbers throughout the week. So then, you know, you had this group of, like, six and seven year olds that were, like, trading phone numbers, which is kinda funny because you don't usually see that.
Yeah. Looking That's nice.
But... So then all the moms had to start a group chat. We were like, okay. We need to set some limits around because they were, like, FaceTime each other, like, 13 times a day. Like, you guys cannot be on FaceTime all day.
They're excited. It'll go away.
So... We're like, alright. School's starting, so no FaceTime during school hours.
Oh, wow. It's... Ain't that nice, though? I wonder how much I wonder how much that'll stick. I wonder how much you'll still know those kids in six months or a year.
It'd be interesting to know. You know what I mean? Yeah. Well, it's very cool. Yeah.
Well, Veronica, I appreciate you coming on and sharing all this with everybody. And, I mean, I I guess you have to go back to work. You're you're I'm I'm making air quotes, but you're working. Right?
Yeah. We're on a lunch break, so I still got twenty minutes.
It's it's a nice lunch break. Well, I wanna let you go so you can eat a little bit, unless you just wanna have lunch with me and chat. I don't have any food, but you could you could whip out your sandwich. What is for lunch, by the way? What are you having?
Kielbasa and squash and zucchini.
Really? You brought it from home? Yes. It's nice. You didn't tell me, can I ask one last question real quickly?
Yeah. Of course.
What'd you build the sewing room for? Did you need an oasis?
Yes. Just somewhere to go and, be creative and and disassociate. I'll put headphones on, listen to an audiobook.
What was happening that you that you felt like I have a... I need a place to go?
I have three kids. Somehow
not a deep answer, and you had a very deep answer. I Yeah. You just a lot going on, and you could use some time.
Yeah.
Okay. Alright.
And I knew, like, realistically, like, you know, we're not going out on date nights and out a lot because we have three kids, and not only is it hard to find a sitter that can take care of a type one, but also to pay for a sitter and also pay for the date night out is just expensive. Yeah. So this is a way I could like, alright, like, get out and, like, have a night to do something.
That's awesome.
But also still be available when diabetes comes calling.
Yeah. That's a really great idea. I, I'm happy that you found something that works like that for you. It seems that the podcast you just enjoyed was sponsored by Tandem Diabetes Care. Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox.
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