#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
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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.
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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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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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