#901 Out and About and Full of Doubt
Amanda’s son has type 1 diabetes and she has rheumatic health issues and some other stuff going on.
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Scott Benner 0:00
Hello friends and welcome to episode 901 of the Juicebox Podcast
Welcome back, everybody today on the podcast I'll be speaking with Amanda. She is the mother of a child with type one diabetes. And I love the title of this episode. While you're listening to our conversation today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. If you have type one diabetes and are a US resident, or are the caregiver of someone with type one, completing the survey AT T one D exchange.org. Forward slash juicebox is incredibly valuable. T one D exchange.org. Forward slash juicebox. Maybe take your 10 minutes to complete the survey. You're going to help diabetes Research type one diabetes research to move forward. Simple questions, simple answers, HIPAA compliant, absolutely anonymous. It will only take you 10 minutes. I think you're basically just sitting on your sofa right now anyway, touched by type one.org. Do me a favor, please complete the survey.
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Amanda 2:25
So I'm Amanda and I live in the east coast of Canada. And I have a son Boyd who was diagnosed July 9 last year.
Scott Benner 2:36
Okay, so let me make sure I understand Boyd is how old nine.
Amanda 2:41
Yes. So he he was just about to turn eight when he was diagnosed.
Scott Benner 2:46
Okay, urine a month ago, 13 months ago, you already said a bit. So that's great. You don't know you did it. But I appreciate your about that was very Canadian. And we're well on our way. Okay. So you have a lot to talk about. I think
Amanda 3:03
I have a very lengthy story. Do you
Scott Benner 3:07
want to? Do you want to start with your story? Or do you want to talk for a little bit and get to your story?
Amanda 3:12
Whichever, wherever you want me to start? Interesting. Okay. Well,
Scott Benner 3:15
let me make sure I understand the backing of the story. So any other kids?
Amanda 3:22
Yeah, I have a daughter, Nora, and she just turned 14. Okay, married, not married. Married my husband Ryan. Okay.
Scott Benner 3:32
Daughter's 14. Any other autoimmune stuff? Oh, yeah, we
Unknown Speaker 3:38
have a lot.
Scott Benner 3:40
At ease with the kids.
Amanda 3:43
I know. This is the first with the kids, but I've battled with different things since I was probably 15 years old. Okay, how old are you know? I am 42.
Scott Benner 3:55
All right. What was your first thing? Well, when
Amanda 3:58
I was about 15, I started with joint pain. And it just got worse and worse. And they diagnosed me with juvenile arthritis. Okay. And I was medicated for that. And it was pretty bad. I had to stop school for a semester. And we did get into remission and I didn't really have a lot of problems until I had Nora on my daughter. And then it was about a year after I had her that I had started having symptoms and stuff again.
Scott Benner 4:40
So the joint pain came back after you gave birth. Yeah.
Amanda 4:43
And they say that that can happen with rheumatoid arthritis. That it causes like a flare up after you have children's so I did go back to my doctor that because I wasn't on any medication or anything for years. And it did take them a while to get me in. And eventually, I did get into a rheumatologist again, and they started me on Plaquenil is what I was taking. Are you Yeah, after
Scott Benner 5:14
her birth? Can I? Yeah, back when you were a kid, what did they give you?
Amanda 5:19
It was the same thing. Plaquenil and then just
Unknown Speaker 5:23
pay like,
Amanda 5:26
went away. And then I stopped taking the medication. I was good through my 20s and stuff.
Scott Benner 5:32
Okay, so you took that? I'm sorry, I think you might have like, flipped out for a second. So you took the plaque when I was a kid for how long?
Amanda 5:42
It was probably about maybe a year or so.
Scott Benner 5:46
And then you stopped taking it because the pain disappeared?
Amanda 5:49
Yeah, I just I thought I first tried to go off it and, and it did come back. And so I stayed on it for I can't even remember how much longer and then went off it again. Months later, maybe? And then it didn't bother me again, like, in my 20s at all, really?
Scott Benner 6:12
And is that your diagnosis of Ra.
Amanda 6:15
Um, they did. When I went back to the doctor, they did more testing, I didn't have a lot of, they've always told me I don't have a lot of inflammation markers. But I did test positive for anti CCP, which is a big marker for rheumatoid arthritis. So that's basically what they diagnosed me with. And then it did go on to like chronic fatigue. And I also got a diagnosis of fibromyalgia as well.
Scott Benner 6:50
Are those is that the, the full host of your issues? Or is there more?
Amanda 6:56
Well, ADHD and anxiety, a little bit of that as well.
Scott Benner 7:00
Okay, so and then I did make a list now. ADHD, I'm going to get out of my anxiety, ra, Fibro. And you said something else, fatigue,
Amanda 7:15
chronic fatigue. Now, when after I had, I did get in pretty good health before I had my son, so there's five years between the two of them. And I was off all medication had my son and then it started up within a few months, I started having joint pain again. And until he was probably I think it was three, like I had a lot of pain issues and back and headaches and stuff. And I ended up for I had my son, I started with a lot of pain and stuff again, within a couple of months. And it just got worse and worse until he was about three and I had a lot of back pain and headaches and like pain down my legs and joint pain. And I my mom was talking to somebody, a relative who had Lyme disease. And she thought, Wow, this sounds a lot like Amanda. So she had told me about it. And then I got in touch with like our local support group. And they put me in touch with a doctor in Maine and he had blood work done on me and I did have some markers that showed that I had exposure to Lyme bacteria. But it's very, like things are very different in Canada. They don't do a lot of testing for it. And a lot of doctors are skeptical about Lyme disease. But I did end up going to him in Maine so I traveled down every three months or so and see him and he gave well he he's probably the only doctor that really actually helped me because at the point when I went to visit him I couldn't even sit in the car like it was it was like four hour drive and I would have so much pain by the time I got there like just my back and the back of my head and stuff and I was in pretty rough shape.
Scott Benner 9:34
So he What do you do for you?
Amanda 9:37
Well, he he treated me for a lot of different things the symptoms like he said so he he's the only doctor that really actually helped me like I remember spending at least four or five hours in the office with him just talking about like the different symptoms and he tested for so many different things that they wouldn't test here in my city. So he thought that I probably had exposure to the Lyme bacteria when I was a teenager. And that's what cause the flare that I had so and then it just kind of goes into remission. But then when your body gets exhausted and tired or stressed, it can flare up and trigger other things to happen. So, I mean, he treated me with some of the same medications and some let me think like any depressants like that for pain as well. And I did do some rounds of antibiotics. And, and that was like injectable antibiotics. And it seems I don't know if it's just a fluke or
Speaker 3 10:59
what, but after that, I did start to get better.
Amanda 11:04
And I was probably at the best I had ever been, just before my son got diagnosed,
Scott Benner 11:11
did his diabetes, the stress of his diagnosis, put you back into an issue, are you okay? Now? You're pretty tired. I might just be diabetes, but I hear what you're saying. So. So diabetes is no secret, not easy to deal with. But Dexcom makes it much, much easier. Being able to see your blood sugar or a loved one's blood sugar in real time is a gift that I don't know that I can quantify. But right now I can see my daughter's blood sugar, and she is 700 miles away from me. I can see the number. I can see the direction it's moving if it's moving, and I can see how fast it's moving. Arden just had a meal. Her blood sugar's elevated right now around 150. And I'm watching it come down. It's happening the way I expected to happen. This is just the greatest comfort to us. And a huge help for her while she's away at college, and managing her own blood sugar. This can be the same for you as an adult, or as the caregiver of someone my daughter's age, or even younger. The speed direction and number at your fingertips right on your iPhone or your Android phone. It's just me, you should just get it dexcom.com forward slash juicebox. It's hard to sell something that, in my opinion is so obvious, right? It doesn't need a sale. I think you just need the PE dexcom.com forward slash juice box, go get it if you can. It's amazing. Seriously, seriously. I don't know. It doesn't require selling, it requires education. Just understanding what it can do for you like seeing in real time right in front of your face in a way that's understandable and easy to digest. I ate something or my kid ate something and I'm watching the blood sugar. I see what happens. I see what happens when I put the insulin in here versus when I put it in over here. I see it and then I can make decisions about it. I can fix it or do it better. dexcom.com forward slash juicebox please take my advice and check it out. While you're out buying things, get yourself some super comfy cozy sheets or towels or sweatpants or scrunchies or so much socks cozy Earth has it all cozy earth.com Premium stuff. I'm not kidding you. Super soft, super like washable and resilient. You're going to love it. I have the sheets in the viscose bamboo. I have some joggers, a sweatshirt and the viscose bamboo. I've got some towels coming. You can't go wrong with quality. And you can't go wrong with comfort. I mean, especially coming out of the shower, like all your bits are available. Should be nice to them. You don't I mean, and when you're sleeping. Oh my goodness, what are you gonna be hot and sweaty while you're sleeping? No, no one wants that cozy earth.com Now here's the thing. You go there, you get whatever you want. You put it in the cart. And then when you check out juice box is the offer code that saves you 35% On your order. I'm telling you 35% That's a lot. That leaves you only paying for 65% of it. Which is that right? 65 Dammit. I might have got that wrong. Give me a second 6535 and I take the five and the five and make it a zero then I put a one over here. So I get a zero, a six three and a one six plus three is nine was 110 Yep, that's right. Cozy earth.com use the offer code checkout to save 35% off your entire order. My math is rock solid
Amanda 15:24
Oh, I'm pretty tired.
Scott Benner 15:26
It's hard. I might just be diabetes, but I hear what you're saying. So yeah, so So for all your stuff. Basically, they gave you kind of high impact antibiotics. They gave you an SSRI for the pain.
Amanda 15:44
Yeah, and I was on neuropathy medication as well, because I had a lot of like, just weird sensations and tingling and pains in my legs and arms. But the doctors Hiro is just stuck with like, it's the rheumatoid arthritis, but they never did. Like I love my doctors here. And they're great, but they just never seem like they really listened. And I always felt like I almost like they thought I was making things up, which happens
Scott Benner 16:15
a lot. Did they tell you just to go have a Molson and take a brisk walk? And you'd be okay. Pretty much. Yeah. Amanda, if you can just get through this a little longer. Yeah, I appreciate you're about still they're really coming fast and furiously. I'm enjoying them very much. It's a good time. Okay, so you, that all happen to you. That's terrible. So in your heart, do you think you have autoimmune stuff? Or do you think you have autoimmune stuff that was kind of kicked into gear by a tick bite? Or do you not even know how to think about it?
Amanda 16:51
I don't even really know. I'm not sure if I have rheumatoid arthritis. I've said that to my doctor. And she's like, No, you're you were positive for the anti CCP. And that's America. And but I don't know if maybe lupus or because that's in my family as well.
Scott Benner 17:13
You have people in your family line that have lupus.
Amanda 17:16
Yeah, yeah, I do. And I do have an aunt on my dad's side who she experienced joint pain and like when she was younger as well, kind of kind of the same thing as me. But I have like on my mom's side, there's a couple of them that had lupus as well. And my sister my niece, they have different joint issues and problems too. But I also have thyroid issues in the family as well.
Scott Benner 17:47
Does any do any of your issues impact your digestion?
Amanda 17:53
My stomach bothers me some I did. That's one of the things that the doctor in Maine helped me with I get on like a gluten free. So I do I eat gluten some just more like if we're out somewheres but and I don't eat dairy. And I eat lower sugar. Unless I'm having treats.
Scott Benner 18:19
Okay. All right. So before we move on, just can you say Out and About for me? Out and About. Thank you. That's so amazing. Thank you so much. Because you don't know what you sound like when you say it. But it's delightful to me. Oh, great. You'd like out and about that fantastic. Thank you made my whole day. Okay, so your son's diagnosed with type one. Is there any other type one in your family line?
Amanda 18:50
Yes, my dad actually was type.
Scott Benner 18:55
Campbell believe you broke up again. Damn it.
Amanda 18:59
And also two adult children. They're adults now. But they would be my cousin's kids. So they're in the same generation line as my son were diagnosed when they were about the same age nine. I think
Scott Benner 19:15
I'm gonna stop you for a second because you started telling me that your dad had type one. I lost you again. So here's what I'm gonna do.
Hey, hi. Hi. Good. All right. Let's cross our fingers that that did something.
Amanda 19:33
Okay, you're way louder now because I got my husband's headset.
Scott Benner 19:37
Oh, you sound much better too, by the way. Yeah.
Amanda 19:40
It's playstation one so.
Scott Benner 19:43
Well, okay, so we're back. We did a little bit of updating to some software. And I asked you if there was any type one in your family and you said yes, my dad and then I
Amanda 19:53
lost you. Okay. Do you want to know but my dad,
Scott Benner 19:57
I want to know about everything you were saying when I couldn't hear you. Okay, yes. So
Amanda 20:01
my dad was diagnosed as an adult, probably in his 30s, I think. And he also are my cousins. on his side of the families. There's two children in the same generation line as my son Boyd. And they were also diagnosed when they were about the same age.
Scott Benner 20:24
Okay. So your father and two other relatives on your dad's side who are your son's age? Yeah. Okay. So that's for now. All right, and you said there's thyroid in the family, too? Who's got that?
Amanda 20:41
Um, I believe that I probably do. I did. That's one thing that I was tested for when I was in the States, and they haven't done any testing here, but I did take like a low dose dose of the Synthroid. For some time. I have my bloodwork stuff out, in case you ask,
Scott Benner 21:04
Are you not taking it now?
Amanda 21:06
No, I'm not.
Scott Benner 21:08
I didn't Well, you're tired.
Amanda 21:10
I'm not sure. I wanted them to test me again here. Before I tried it again. But I did. I don't know if it was too much. Because I was like, sweaty a lot. And just like, I felt like it was too much.
Scott Benner 21:27
Or taking too much. Probably. Yeah, yeah. So you how much do you remember how much you were taking?
Amanda 21:34
It was only 25. Okay, milligrams. Yeah.
Scott Benner 21:38
Were you losing weight?
Amanda 21:40
Uh, no, I was quite heavy at that time. Just because I was also taking something else that was making me gain weight.
Scott Benner 21:49
I wasn't sure if you were hyper maybe like, if you had hyper, if you had taken so much Synthroid that you were too low. Your TSH was too low. That's what I was trying to figure out.
Amanda 21:58
Something like that might, uh, went on, I was looking at my blood work. And the last one that was 2021. My TSH was low. And my T four was
Scott Benner 22:13
up. What was your TSH?
Amanda 22:17
Do they measure it different between Canada? And
Scott Benner 22:20
I don't know you're about to find out. It should be like about like a one to 10 scale.
Amanda 22:24
Yeah. Now secure. You're gonna hear my papers probably.
So point
Scott Benner 22:40
two, six. Yeah. So little high.
Amanda 22:44
And then at that time, because that was in April 21. Oh,
Scott Benner 22:48
wait, two? Not two. Point. 6.26. Yeah, that's what it says. Alright, so
Amanda 22:55
then my T four was 15.9.
Scott Benner 23:03
So your idea now is to go get more blood work done. But are you having trouble getting someone to do it for you?
Amanda 23:09
No, I could probably my family doctor would probably do it. I procrastinate a lot, because I'm so busy with everybody else's issues.
Scott Benner 23:20
Well, take a day and do that for yourself.
Amanda 23:22
Yeah, my grandmother. She has like my mom's mom. She's always had thyroid issues.
Scott Benner 23:29
Okay. So do they medicate for it? Yeah, she takes them through it as well. Your mom's mom's alive, though. Yeah, she's
Amanda 23:37
- Jesus.
Scott Benner 23:40
That's really old. Yeah, she's
Amanda 23:43
a happy little one now.
Scott Benner 23:46
Probably the cold keeps her going. Yeah, probably. Yeah. Okay. Well, what was Pope was the What led you to believing that your son needed to go to the doctor before his diagnosis?
Amanda 24:04
Well, I always like it's funny, because I always had like this thought like, Oh, what if one of my kids have diabetes, like my dad did. And so I always had it in the back of my mind, and I always watched for it, but I never realized how much I didn't know about it and like, not know what to look for. Now, Boyd has always been a very fussy little guy ever since he was a baby. And I always felt like something was off with him. Like, even when he was an infant, like he had like, sores in his mouth. And I took him to the doctor. I took them to like our dentist, they sent him to an oral surgeon to have a look in his mouth at these sores, canker sores, and they never ever could give me any answer. And I kept saying like They come and they go, and they come and they go. And then eventually, when he was probably over one, we didn't really see many of them. But he was always tired, and just irritable and could never keep up with the other kids. And, and I, one thing why I wanted to be on the show is because I, when I first found the podcast, I listened to some ladies, I tried to find the episode that it was and it was about someone who had a lot of regret and stuff about not seeing the signs and stuff like that. So that's one reason why I wanted to come on because I, I really didn't see what was right in front of me. And I could have took him to the doctor. And I had, I had a hard time with the doctors because I was wrong with me or the kids. So I put it off. And at the end of his, I guess 2021 school year, he was drinking a lot of water. And we just thought that maybe it was hot out and stuff like that. And he was very irritable for a couple of weeks, and I reached out to his old kindergarten teacher. Because I had, I had urine analysis test strips that I had for myself, and I just got him to pee in a cup one day and the glucose on it was like at the highest it could be on the test strip, and the ketones were on the highest as well. So I reached out to her because I knew her son was diabetic. And I just had this weird feeling that something was going on with him and and when I did the urinalysis test strips,
did you get that part? Yeah. That they were at the highest
marker on them, right. So I went and got a meter at the drugstore. And did a test on him without him knowing because he's pretty high anxiety. So he would never let me prick his finger anything. And it said 33 over 33 Actually it said. So she encouraged me like to take them to the hospital. And I was still questioning like, should I take them up there? It's like, during the middle of COVID. Maybe it's not really this and I guess I just it was hard to believe that it could possibly be diabetes, like my dad,
Scott Benner 27:47
even though that's something you worried about? Yeah. Which is funny.
Amanda 27:50
So. So we ended up taking him and it was it was late at night he had fallen asleep. And we took him and he I mean again he couldn't they couldn't even read his blood glucose. It was so high. It just said high on the meter. And they admitted him like right away and started on IVs. And they had to give him Ativan to calm him down because he was so hysterical. And yeah, so he was in DKA. His a one C at that time was I think it was 12.7. So he was a sick little
Scott Benner 28:36
boy. Yeah. Well, I'm glad to talk him, obviously.
Amanda 28:39
Me too. And I thank her like, every day I send her updates all the time. Because she basically, she saved him because I would I think I would have kept doubting that. I don't know why. Because I'm usually very, like, notice everything that's going on. But maybe I was in denial that it could actually be something serious.
Scott Benner 29:06
No, I understand. And so now you're kind of torturing yourself over that still a year later.
Unknown Speaker 29:12
Yeah, I still do. I
Amanda 29:15
I think about it a lot. But I can I remind myself that, like I didn't really know. And he's okay, so yeah, it's still hard. No, I
Scott Benner 29:27
understand. But there was really no way to know. I also think I might name this episode out and about full of doubt.
Amanda 29:35
That's awesome. I'm definitely full of doubt all the time.
Scott Benner 29:42
Well, I mean, you're you're past that now, though. I mean, I don't know what you do to let go of it. All I can tell you is that most of the people I've spoken to in your situation, feel it in the beginning and it lessens over time.
Amanda 29:55
Yeah, and I know I remember. I don't even know how I stumbled upon the podcast, I just seen something and then went to it and started listening. And I just remember standing like crying, because I couldn't believe that there were other parents that felt the same way. Like I thought I was the only one that felt like that.
Scott Benner 30:16
Do you have a real like, conscious thought? Like I'm alone in this? Or is it just a feeling like when somebody says, I found community, I realized other people felt like me, I thought I was the only one who felt like this. Did you? Did you really think that? Did you really have like a conscious thought? Like, I'm by myself? No one else knows how I feel? Or is it just a? Is it just a feeling? Or an Express?
Amanda 30:43
No, I really did. I did. I guess I I didn't know that. So many people would feel the guilt that I felt for not seeing and letting it go on for so long. Kind of thing.
Scott Benner 31:00
Sort of this expectation that everybody's better at something than you are? Yeah, I probably think like that a lot. Yeah, that's probably not true, by the way.
Amanda 31:10
But I I know, I'm good at this. It's taken a while but like, I've surprised myself in like his management. I know I can be really good at it. And I'm learning a lot and I've put everything into it. But I probably wouldn't be where I was if it wasn't for you in the podcast and the whole
Unknown Speaker 31:35
Facebook group.
Scott Benner 31:37
Yeah. You got into that very quickly after diagnosis into the Facebook group. Yeah,
Amanda 31:40
it was September. So and I asked a lot of questions. I was like, Oh, my word people are gonna be so annoyed with me. But there were so many people like strangers that were willing to help out and give advice. Like, I probably sometimes put on three questions a day just to get this support and see what other people were thinking and, and know that I was kind of like on the right track.
Scott Benner 32:09
I'm scrolling through your posts right now.
Amanda 32:13
Oh, no.
Scott Benner 32:14
I'm just like scrolling. They're, they're limitless. I feel like I feel like my fingers gonna get a cramp. If I keep scrolling. You probably will. I don't know if I should be happy. I mean, Amanda. Yes. Sorry. You disappeared again. But sorry, I have no idea what's going on. It's like the last couple of days this is happening. It's not my setup, but might be the internet. Maybe everybody's home from school using the internet and they should stop and go back to what they're supposed to be doing. So I can make my podcast plus your what do you do probably like on like, the tip of an iceberg or something like that. Wherever you live, right? Sorta, yeah. Are you really know? Maybe like, right in the middle of Toronto or so?
Amanda 32:59
No, no, definitely not. Oh, yeah. Those people who? Um, braid on the river,
Scott Benner 33:04
so nice. Well, anyway, so you posted a ton. And as you're thinking, like, Oh, I hope people aren't bothered by this. What I privately think is, this is terrific. Because your questions, got conversations moving.
Amanda 33:25
Yeah. And I did notice that like, and some, they would lead to different conversations between other people in the threads. And then I was able to learn more just from them changing the topic to something a little bit different.
Scott Benner 33:43
Yeah, I had a person one time put a post up. It only happened once. They said, this group is full of information, you should do a search and stop asking questions over and over again. I message that person I was like, Hey, stop it. Like was like you fundamentally misunderstand what this group is. It's not a encyclopedia. Like like people who think that Facebook groups are already have all the answers. So just go find them. That's a quick way to kill a Facebook group.
Amanda 34:13
Yeah, it's, I mean, every day there's a different topic and different people's lives, like what they're going through. And it's you pick something from it. Yeah. And I was really embarrassed at first to share because I'm not like, like, my Facebook page is just like silent. There's nothing on there. But like to open up and share and ask the questions was like, like, I was really nervous about that. But at one point, I was like, You know what, it's for my son. I'm gonna do this and, and it's helped like so much. So I always post whenever there's people like new people always say like, listen to the all the episodes and ask questions.
Scott Benner 35:00
Yeah, it's very, very helpful. It's not just helpful for them. It's helpful for the, for the group to, like, I can't if if I made it my life's work to just manage that Facebook group. Just me. I'd never do anything else. No, probably not. Yeah, average of, I think it's right now 80 to 110 posts a day. That's crazy.
Amanda 35:22
Yeah. And 75 of them are probably mine.
Scott Benner 35:28
And I don't, I'm not even aware that groups at the point now if people tag me, it's even a crapshoot of I'll see it.
Amanda 35:38
But you're there, you're involved. And it's like, really something to see. Like, you comment to things like, because you're taking your time to do that. And you don't see that and a lot of groups and stuff. I'll tell
Scott Benner 35:51
you, there are moments. Like last night, I was sitting here, headphones on editing a show. So listening to a show with with a mouse and a keyboard to my left in case I needed to do something to that. On my right. I was building a web page for content that's gonna go up in a couple of days. And I was talking to people on Facebook saying,
Amanda 36:17
Oh, my goodness, I was like,
Scott Benner 36:20
and then if you go downstairs and ask my wife, oh, don't talk to him while he's doing something. He can't do two things at once. And I'm always like, Yeah, okay. But anyway, it's important, like the group is important. What it does for people is important, and the way it works. Is, is is valuable. If you come on, you don't know, you ask a question. Somebody hopefully steps in and says, Well, let me ask you another question. See if we can get to your problem, or some people will come in with advice. And every once in a while, they're still, you know, there's something happened the other day where I just felt like, there was a moment where I was like, there's like, 20 crazy people in here. If I could just make them leave, this would be better. But yeah, but at the same time, I'm like, It's okay. Like, they were in their own thread. Being crazy. And I was like, yeah, good for them. Like get any like somebody, like, you know, people can report posts. Yes, someone reported it. And it caused me to go read through it. And I thought, Oh, this doesn't matter. Like, let them let them be get an amen. Like they're, they're having their own conversation about something like do I think they're right? I don't do I think they have conspiracy theory issues and should speak to somebody? I do. But it didn't bleed out into the rest of the group. And that just means that there's 109 other posts that day that somebody else can do. And I know it can sound overwhelming, like, wow, there's that many. But it doesn't work that way, the algorithm does a surprisingly good job of pushing down posts that don't find engagement. Oh, really? Yeah. And it's not that people don't get their questions answered. They just don't end up in posts that are like 30 Answers long. If somebody comes in says, you know, asks a question. Next person's like, oh, yeah, this this, this, the other person says, Thank you, and it kind of dies. You know what I mean? But that person still got their, their question answered. So I don't see a better way to do it at this point in time, but the way technology is set up right now, I can't believe I'm saying it. But Facebook groups are perfect for this. So yeah, it's great.
Amanda 38:37
It's, it's my go to for everything. If I have any questions, I'm like, Ah, I'm gonna ask my group. And then they all laugh at me and then gets funny.
Scott Benner 38:47
Well, do you get your answers? Yes, I do. Perfect. Yeah, absolutely. Perfect. And look how you threw yourself into all this for your son. And you really did. So tell people a little bit about like, what the journey has been like, for the first year understanding diabetes?
Amanda 39:02
Um, well, when they told me that he had type one. Like, I was like, Oh my gosh, what? Like, what am I gonna do? He's a picky eater. Like, he doesn't he only has like, 10 things he likes to eat. And just I had even though my dad was type one, I had no idea what it was actually. Like. And we just, I don't even know I just came home and and his blood sugar's were I mean, crazy. In the beginning, I have a book that I looked back and that first little while was just like, above 10 all the time. And, and you can see when I pull up my clarity and stuff, when I started listening to you, and learning more, and there was at some point that I just like I wasn't getting anything for In our local clinic, the group and the podcast was where it was going to learn everything I needed to know. Now Boyd does have a lot of anxiety over pretty much everything. So that was really hard for him. He liked the injections. It was just like crying. Every time he would avoid treats like, because he didn't want to have any more injections than he needed to have. And through the group, I did find one lady had mentioned to me about the Medtronic. They i Poor report. Yeah. Have you ever seen one of those little things? See the picture of it? Yeah. Yeah. So I was like, I'm gonna order that and try it out. So I put them on. Oh, he everything he has on him all his devices we do when he's sleeping. Because he wants nothing to do with it when he's awake. So the decks calm. Whenever we have our Dexcom change night we do it once he falls asleep. He never wakes up sleeps through the whole thing. We do. We did the eye ports that way as well. And he he had said that we made this video one time, I think I sent it to you. I don't know if you've seen it. But we were just sitting at the table. And he was he was like, Can I have a chocolate bar from his Halloween treats. And I was like, Sure, we could just give you the extra insulin for and he had his eye port. So as we were sitting there, he said, you know, my eye port almost makes my life like normal again. Because he didn't have to experience the pain of having the injections. So anything that I could do to make it easier for him. I'm gonna do it. And I'm gonna find a way if there's a way he doesn't like things or bothers him, I'm gonna find a better way to make it more comfortable for him and the eye ports. I highly recommend those. Anyway, great.
Scott Benner 42:04
Is he still using MBR? Now?
Amanda 42:08
No, we're on Omni pod now. Oh, okay. He's been on that since early May.
Scott Benner 42:16
And he's okay with insertion. But it has to happen when he's asleep.
Amanda 42:20
Well, see, I he started with the Omni pod asleep. And we told him you know, it does fail sometimes. So you'll have to do it in the day. The first ones in the clinic, he did do it. And he said it wasn't too bad. But he preferred it when he was sleeping. But the last probably two months, we've had to do Dexcom in the day. And he's doing it awake. He prefers that, like when he's sleeping. But he does do it. And the Omni pod if we need to do that earlier, something he'll do that when he's awake too. So I feel like that I just gave him his own time to get used to, you know, this big
Scott Benner 43:04
life change. And he's making progress now. Yeah, he is he's doing
Amanda 43:08
it all on his own. And
Scott Benner 43:12
that's excellent. Good for him. That's really great. Plus, I mean, how you can't keep that going forever with the sleeping thing. Also, I'm impressed that he can sleep through.
Amanda 43:22
He doesn't but jumped on you if there was some nights we would have to do like Dexcom and Omni pod it would fall on the same night. And we do both of them and he'd stay sound asleep. The whole time.
Scott Benner 43:35
I was making myself laugh while you're talking. I was thinking like what happens if at four in the afternoon, you need to change something? Does he run over on the sofa? Lay down and go to sleep real quick. So
Amanda 43:43
no.
Scott Benner 43:46
But that's really great. I mean, that's terrific. It's in his time you took care of it? Do you really think it was the people say anxiety a lot, especially lately? But do you think it will it's real, like clinical anxiety? Just think it was a nine year old kid was like I really prefer if you didn't stick that needle in me?
Amanda 44:03
No, I think I mean, he's had a history of it with before diabetes, he's just always been anxious and afraid of things and, and scared of new things. And just it's just like that form but it's all once we've get over this hump of like this big life change because you know, he now he used to say like he hated his life and diabetes ruined his life and and you might as well die. He would say he has to have diabetes, and I can't even remember the last time he said that. Like, like he's happy now and he he'll joke about it some and I love insulin. I don't take it all die also. But like he's happy because I think it's because I let him adjust to the new lifestyle on his own. Yeah,
Scott Benner 45:02
no, it sounds like he did a really good job, honestly. And you're understanding the diabetes on top of that, like, what's his agency now?
Amanda 45:10
Well, we haven't had an official lab, a one C done. Because of COVID. It was
Scott Benner 45:17
an iceberg. Just stick with the Joe command. Right. And it's too hard to you know, get the dogs together and go all the way to Maine to get your blood test. So okay, now that my sledding dog right, of course, so and what are you going to feed them? They're hungry, and if you they run, they need more food and exactly busy. So but But what are you getting off of clarity?
Amanda 45:42
Yeah, and I did have one done, you can do the meter when like at the drugstores so at his six months, he was five, nine. Wow. And we're actually next week, he's gonna have the lab a one C DME, but still on Claire.
Scott Benner 46:02
We were doing so good. And say it again on clarity he was.
Amanda 46:09
He's still five nine on clarity. Wow. But it was it was up to. But did you ever notice that in? When you look at the summary unclarity of the A one C and then you look in the AGP. Part of it, it's different.
Scott Benner 46:26
Can I be honest? That's what this is. Right? I don't look at those apps very much anymore. Artists, a one C is about where I expect it to be. If we're doing great, it's 56789. If we're doing terrible, it's 6123. Like in there? Well, not three, usually six to eight. And I just don't I just trust that it's going to work out the way I expect it to because it just does.
Amanda 46:57
Yeah. And I honestly, I'm kind of like that as well. They won't see doesn't really, like it means something to me. But it doesn't because I see what happens every day for him. And I see like, I like looking at the standard deviation. If I can keep that tighter that he's not bouncing up and down all over the place. I'm more happy with that. Yeah. Now with the clarity, like, I kind of lost control after we started on the Omni pods. So maybe a little bit before that. And it did say 6.5. But I've noticed, like, in the last months, like I'm getting more control. And I've also find when like there's, I mean, there's your way of management. And then there's the doctors way of management, right. So every time I go, it's like, I get a lot of fear. They put a lot of fear in me of lows, and and I feel like I'm doing something wrong by trying to keep him in such tight control. But when he is in better control, when at better numbers, I can see that he feels better, right? Yeah, I'm not gonna, I just can't do that. I feel like it's my job as mother, right? So I'm not just gonna let him bounce all around. So I kind of get afraid of the insulin for a little while. And I feel like I'm back on track now. And I'm being more aggressive and things are, like doing a lot better. Just in the last month. When you
Scott Benner 48:43
move from MDI, you had you had a way of doing things. You move to a pump, you had to adjust. And now you're figuring that out. Right?
Amanda 48:50
Yeah. And I'm in a good place. And I'm actually I've built the loop app. Okay. So I'm dabbling in that now. But again, it's something new, so it makes me nervous. But I really want to do it. And I've built the app, and I am just waiting for my orange link because I got an emo link and it was It wasn't really working. Right. So I've had to send that back to Robert. And he's gonna look at it for me.
Scott Benner 49:26
I just bought I just bought another orange like the other day.
Amanda 49:29
Yeah. And I was like, I need to anyway, so I'm gonna get the orange link and try that and it should arrive tomorrow or the next day. But it was amazing. Like the little bit I did try it to see what it could do for him. So right now I've been kind of acting like the algorithm myself just from seeing it for only a few days.
Scott Benner 49:51
Isn't it watching watching the algorithm works. You're like, Okay, I see. Like I see or you see I see where more is needed and where less is needed and How much yeah, it is to make decisions when you've, when you've seen it happen when you've seen that algorithm do stuff. You're like, oh, I never would have thought to put insulin here. That's a great Yeah,
Amanda 50:08
yeah. And take it away. I've been doing like Temp Basal Slyke off and stuff. And I've stopped lows. Like, when I knew it was gonna keep going down. Oh, for sure. And it's worked really good. But my my problem is, well, the basil, I'm always questioning the basil, I can't seem to figure that out. And I know I heard you say once that Arden has more basil in the daytime. So I'm wondering if Boyd needs that because I can, like he's only at point two right now. For basil like his, his insulin needs are very low. Like, it's usually be at between 10 and I think 14 units a day. But that's just because we've been having summer treats and extra food. Yeah. So I can leave him if he's gaming, and sometimes till 11 In the morning, but I'll just leave him alone. And he can stay up point to that whole morning and not need anything and be like in the low fives. And then yeah, and but then as soon as he has breakfast. And then Breakfast has been really good lately. Like I think I he only went up to he didn't even really have he went to 6.9 at breakfast, and then stayed up there for a bit and I had to give him a little more. But then lunchtime. And then after lunchtime till bedtime is like the big problem. He just he stays up.
Scott Benner 52:03
Lunchtime. And what happens if you get more aggressive with it? Well, oh, later.
Amanda 52:08
Yeah. But I can't figure it's really hard. What I find to figure out is all the variables that you have to deal with with a child, especially with the activity, because if I don't give them enough insulin, which I've increased or decreased, I guess his his carb ratio, and it will work. But as soon as he starts playing and stuff, he drops right down.
Scott Benner 52:34
Right? So so that is strong enough. If he's, if he's sitting around, it's perfect. And once he becomes active, there's too much insulin there.
Amanda 52:43
Yeah. So which way do I go? Like, I just, I find it very confusing to figure out that like, but in the last week or so I have been, I've been trying the stronger like insulin at lunch. And it's almost like he is taking double the amount if he just sits around, he needs double the amount of insulin. And he, like he'll stay pretty good, like the breakfast there. And I'll keep it at the strongest or stronger insulin. And then if he's gonna do activity or play with a friend, I will judge it on that and take it away. Is that what people usually do? Do you know what I mean? Yeah,
Scott Benner 53:32
yeah, sure. You do like a Temp Basal decrease over, you know, before the activity and maybe during the first two thirds of it or something like that.
Amanda 53:40
So what because I asked a question in the group there just the other day about, like, when is your carb ratio supposed to work? Is it supposed to work? If they're just sitting still? Is that?
Scott Benner 53:58
The answer is that if they're just sitting still, then maybe there's one ratio. And if they're moving around, there's another? And you just have to maybe be aware of that or shoot the middle? Yeah. And, you know, make up for it on either side. Deal with a with more or less, depending on?
Amanda 54:16
Yeah, and I think that's kind of just clicked recently that maybe I should be more aggressive. And work back like that if I need to.
Scott Benner 54:25
Well, 13 months in Amanda. You're doing great. So thank you. Yeah, I wouldn't I wouldn't beat yourself up about it. Just I mean, it's a what do they say? It's a marathon, not a sprint. Right. So,
Amanda 54:38
oh, it's so much more like I'd never realized what my dad went through or anyone that has type one or a child with type one and a lot of people they, they just they don't understand that it just never stops. Like it's every minute every time Everything he does if he games if he gets upset if he walks the dog, like, every little thing affects his blood sugar.
Scott Benner 55:08
Yeah, it's funny. It's you know what it is, it's um, everything in life is that way, except there are things you can ignore. And or put off till later, right? And diabetes ends up not being one of those things that you can just say like, ah, you know what, I won't pay, like, you know, you get into a fight with like your neighbor, and you walk back in the house you go, I'm not gonna think about that anymore. I mean, they still hate you. And, but it doesn't really impact you in the moment, because you're back in your house. But, you know, when you're doing diabetes, you know, ignoring it, it's funny, right? Because the The goal is not to be paying attention to it constantly. Yeah, the goal is to find stability that exists on its own doesn't need your input a ton. But if you do ignore it, people ignore it on the high side, because they don't want to get low. And then before you know it, you've been in your house for six months, you haven't talked to your neighbor, and you're a one sees eight and a half or nine. And, you know, you've you've done a real disservice to your health at that point. So
Amanda 56:12
yeah, and I'm probably I fear that a lot because my dad isn't with us anymore. He, my dad was great. He was a great dad fun. But he did live, like quite a hard life. He was a truck driver, and he drank and smoked. And and that doesn't really work. Well, type one. So he did have a heart attack and asleep when he was humbled was a 51. Wow, that Moore's around there. But now, the more I have learned, like, I know that it wasn't just the heart attack. I know it was the complications from poor management,
Scott Benner 57:04
and diabetes probably caused the heart attack.
Amanda 57:07
It did. And nobody knew that. And I didn't realize that till I learned so much more like about it, because I know, there was lots of times that we thought that he was just like, on the couch sleeping, but he was probably near diabetic coma or something like he just was all over the place. Yeah. No, it was in their 80s and 90s. So I mean, you didn't? He didn't know in a small town and
Scott Benner 57:39
plus Canada. You know, I'm saying, yeah, no, you have to go all the way to Maine to find out if you have Lyme. Come on Canada do better. Terrible, really bad. You know, I don't want to share somebody's details. But I know a Canadian who's having trouble getting some simple health care right now. It makes me angry. So now
Amanda 57:58
it's different. Yes.
Scott Benner 57:59
Yeah. Well, there's a triage system. Yes, yeah. You call your doctor, you're like, hey, I cut my finger off. Oh, come right in. That's fine. You call your doctor and you say, my finger really hurts. I think it's gonna fall off again. It's fine. You come in about four months? Yeah. So it's and I don't think that the person with a cut off fingers shouldn't get quick treatment. I don't understand why everybody else keeps getting, like why does the system not account for the fact that there are some people in emergency situations, and some people were trying to improve their lives? And we could see them all at the same time? I don't. But I'm right about that. Right. Like, that's how it goes. You kind of get pushed off if your stuffs not as serious. Yeah. You don't want to speak bad about the motherland. I hear what you're doing right now. But it's okay. I'll do it for you. You don't have to say look, there's plenty of problems with the American healthcare system. So but if you have insurance, or cash getting seen isn't one of the problems.
Amanda 59:02
Yeah, exactly. Yeah. No, it isn't.
Scott Benner 59:05
So I gotcha. All right. Let's see. I was gonna make a big point that I lost it when I got annoyed at Canada. Shoot, shoot. owe you I think you mentioned in your note that you weren't really aware of what can happen when diabetes isn't well managed. That the podcast helped you understand that and I appreciate you telling me that because that was a big moment for me. When I decided like let's just be honest about the whole thing. And not just like the parts that are easier to deal with. Like it's unfair. I just I'm not okay with the idea. What do I want to say here Amanda? I'm aware that there are things happening in my life right now. Physically, emotionally, my my. My communication share with other people. Like, I know there are things that are happening that I'm not aware of. Right. But I think you want to be aware of, of as much of it as possible so that you can make conscious decisions for yourself. Like, I can't imagine your poor father 51 years old, the heart attack took him at 51. Is that right? Yes, 51 years old, and he's dying in his, you know, in his bed for something that didn't have to kill him. Not as though you know, and he doesn't get the opportunity to think like pause his heart attack and go, Oh, gosh, I wish I would have known more about how to manage my blood sugar. But it's, you can't just ignore things like this. You can't ignore anything, it's eventually going to blow up on you. But there's a difference between losing a friend, you know, in a relationship to bad communication and losing your life. Because you don't understand that you need insulin and how it works. It's not okay to me. Yeah, you know. So anyway, so you say it out loud. And then some people are like, well, you make people upset when you say that I was like, you know, when they're going to be more upset, when they're 51 Grabbing their chest, in their bed, that you know, then they're going to be more upset, like, tell them now give them the opportunity to help themselves. So I think of it,
Amanda 1:01:19
it really doesn't like it just It boggles my mind. Like I just can't believe the lack of education for diabetes. Like it's like, I really don't know where we would be without, you know,
Scott Benner 1:01:38
you don't have to say thank you so great.
Amanda 1:01:39
Like, I talked about you all the time. Like, everybody makes fun of me, my family.
Scott Benner 1:01:44
Oh, tell them to shut up.
Amanda 1:01:47
But you know what, now my husband, I got him on the group now. So I'd be like, do you Did you see this and he'll like, finish my sentence, because now he's into looking through it, and seeing all the stories and he'll ask me, Did you see this? And so it's really great. I got
Scott Benner 1:02:04
freaked out. When we get in bed. My wife says, Did you see a post in your group that I'm like, You're in my group. Stay out of there. I was like, What are you doing? She's American banks around. But no, I think that's terrific that your husband's looking at that really fantastic.
Amanda 1:02:17
Yeah, yeah. He listens to like all tell him the episodes to listen to. And it really got him on board with what I wanted to do with Boyd and how I wanted to, you know, keep things tighter for him. Yeah. And, like, we work so good together. Like, we're like a plus team. I think
Scott Benner 1:02:41
for you. That's excellent. Well, alright, so is there anything we haven't talked about that you want to I don't want to miss anything.
Amanda 1:02:48
I didn't want to I wanted to know, like, with Arden and stuff, like a lot of people push, like, oh, they have to be independent and do this on their own. And I get a lot of that from my son's doctors and the teachers at the school. And like, I believe in that. But to me when I look at how you like you push hard and to be independent, but I feel like, am I wrong that you take on most of it? Like just so she can still be a kid? Like when she was younger and stuff. I wanted to talk about
Scott Benner 1:03:32
I was talking to somebody in my private life about this yesterday. Yeah, because there are moments even at 18 years old, where I'll say something to Arden and she puts it off or she's like, Yeah, I will. I will. I will. And there's part of you that wants to say like, come on, like you're 18 Just do it. You don't I mean, and there's part of me that says, Oh, she's only 18. And people, generally speaking, don't have to live with problems like this, you know what I mean? Unless they have an issue, like diabetes and other things. So there's a balance in there in my mind. And the goal is to protect their psyche and their experience. And at the same time, be doing things in the open so they can see them and learn from them. And then the next. It's not a problem, but the next step is to transfer it to them. And I see that transfer is a slow process.
Speaker 4 1:04:35
Yeah, that's what I feel too, right. And it's not
Scott Benner 1:04:39
like you're gonna like you can pull your son aside when he's 12 and go alright, guess what, Boyd you're 12 years old. Now. Here's how you Bolus for fat and protein you better not forget because you eat french fries. You know what I mean? And your blood jolly eats Yeah, and your blood sugar is gonna go to 250 If you don't know how to do this, and it's gonna stay there for three hours or a once he's gonna go to seven and blah blah, blah. My dad had a heart attack, like you don't mean like, you're gonna like you're gonna, it's too much. So it's little bits, little bits, little bits, and then you kind of have to step back and do an assessment once in a while, like, are they coming along the way I expect? I think they are. And then once in a while, you have to realize that they're kids, and they're gonna use that as protection. Like, I don't want to do that, you know? Or it's sometimes it's little stuff like, I got a text from Arne last night. Can you bring me my blah, blah, blah? And I'm like, okay, sure must be a problem, right? So I leave where I'm at, I go to where she is. And I give it to her. And I'm like, you couldn't have got this she was I just didn't feel like getting up. And I'm like, Alright, like, let her have that a little longer. She's leaving for college and four weeks, no one's gonna ever do this for again, you know what I mean? And so art is a one see right now, it's probably around six to actually I looked on the app earlier, it is around six, though. And it's because she's been doing more of the stuff recently. And she's learning Yeah. And she's, she's having her own experiences and learning things. And I'm doing that purposely now, before she leaves for school hoping that when she gets to school, it'll empower you to make good decisions, not just not just try something and go, Oh, hell, that didn't work. You know, we found out yesterday that her her first semester classes are pretty much as far away from her living situation as possible. Oh, really? Yeah. And now there's a bus that runs through the, so the campus is kind of spread out through a town. So there's a busing system that she's going to have to use. But still, it's like a 26, block walk to one of her classes. Oh, wow. So she's obviously not going to walk it. Right. And then your first thought is, oh, I guess we got to find the money and buy her a car. You know, because she doesn't have her own car. She uses Kelly's car, which drives around here. And then I'm like, I'll just let her take the damn bus. Like, she'll be alright. You don't I mean, like, it's only a couple months, the first time she's going to be away. I'm like, let her take the bus. And and figure that out. Because it's another learning experience. Exactly. Yeah. And so I get when people say it, they need to understand it for themselves. And I get when older type ones say it, because I think what they're saying is I didn't understand my care. And then look what happened to me. I think they mean that a little bit. And at the same time, I don't understand why you'd have to give it all to them on day one, or because I've also spoken to people who've had that happen to them. And it has not gone well either. Like, yeah, you're you're talking about extremes. You know, and and I don't know why everybody, I don't understand, like, you ask the question. And you get, you know, a group of people feels like they're holding the flag yelling, it's their disease, they have to understand it, give it to them, blah, blah, blah, like you don't help them. And then the other side, it's like, well, they're just kids. Like, like, where's the middle? Like, how did we lose the middle? Amanda? You don't need me? When did the? I think it happened for me? You're Canadian. So I don't know about your politics are different. But when I was growing up, politicians tried to make the middle seem like you didn't have an opinion. And I don't see the middle is not having an opinion. I see the middle is a blend of both sides. Yes. So that's how I think about this. Like, I mean, and just you just can't let it get away from you. You can't let them take advantage of you, too. Yeah. That's hilarious. Amanda. And, hello. Hey,
Amanda 1:08:52
and not think about the diabetes for just, you know, my knees playing?
Scott Benner 1:08:56
Yeah, I mean, I have to stop you. I spoke for six solid minutes. Then you opened your mouth and we lost your thing. So just start over what you just said. I'll fix it later.
Amanda 1:09:07
Now, I can't remember.
Scott Benner 1:09:10
I said you can't manage. Have you? Oh, and
Amanda 1:09:13
I said that. I don't remember. You're gonna cut that out. Right? Please.
Scott Benner 1:09:24
Oh, maybe who knows. But anyway, I'm sorry. I went online like that and answered your question. Oh,
Amanda 1:09:33
I love listening to you.
Scott Benner 1:09:34
Do you really? I'm so sorry. Yes. Hello. Have I tricked you into liking this podcast? What happened?
Amanda 1:09:40
I don't think so. Okay, just great.
Scott Benner 1:09:42
Oh, stop it. I'm gonna go downstairs and live with people who don't think I'm great in a couple of minutes. And then what am I going to do there like I to me, I love listening
Amanda 1:09:52
to about your bantering back and forth. With your family. It sounds like mine. We're always picking out each gather in teasing and going on?
Scott Benner 1:10:02
Well, I don't know, I think when you're around people all the time, no matter what the situation, you know, you don't. You don't see the whole thing I started, I started to share something with Arden and Kelly yesterday. You know, everyone's talking about this thing. This subject right there talking about God, what were we talking about? We were talking about just oh, how our brains work. Right. So about, like, some people have inner monologues and some people don't? Yes. And so we're talking about it. And I don't have an inner monologue. Like, I don't have a disembodied voice that isn't my voice that, you know, that's, that's directing me. I'm saying this wrong. But Arden does, like artists had when she reads the voice in her head, says the words to her. It's, it's how she describes reading, right? Yes. And she's like, What happens when you read? And I'm like, I don't know, I just know the words. She's like, you're not hearing them in your head? And I was like, No, I don't think so. Like, or maybe who knows, like, maybe her description or my descriptions are exactly the same. And because I'm looking like here, I'm looking at a different computer screen right now. Somebody's talking about blood sugars. And it says here, the algorithm has specific things it learns from, it won't learn from what But now, if I go back and look at it again and read it in my head. I don't hear the words in my head. Right. But Arlen does. And yeah, and so we're talking about that. And then we started talking about how we understand things. And she said that she has trouble watching television with closed captioning on because she hears the actor's voice. And then the voice in her head says the words when she reads them. And I was like, Oh, I could see how that would be confusing. And, and then I joked with her, and I was like, hey, what else do the voices in your head saying? She goes, they're not voices in my head. It's how I hear things when I read, like, like, okay,
Amanda 1:12:06
that's too funny. Yeah.
Scott Benner 1:12:08
And then I and then she started talking about how she didn't enjoy taking the SATs, because her brain doesn't work that way. And I would not be good at standardized testing, either. But my son, my son, and my wife would be anyway, this is a long way of saying, then I said, Hey, I'm doing this thing. So I can't tell you what this is exactly. But I'm doing a business thing, right. And I'm working, and I'm working with some people. And it turned out really well. But I'm kind of the one that that told them how to do it. Like, they had pages of notes and ideas. And I got on I got on a call with them with nothing written in front of me. I was like, no, no, do it like this, do this. And this, and this, put this here, this is what's going to work. And they're like, that's great. And I just thought like, I don't know why my brain does that. Like, why did I not need to write it down or go over it or think about it before it happened? And and so people's brains just work differently. Anyway, as I'm telling them that my wife and my daughter start mocking me. Oh, I'm so good at this. I'm like, That is not what I'm saying. They're just they love to tease me. It's unpleasant. Amanda. I don't deserve to funny was literally literally trying to like, expand a conversation we were having at the middle. I talked about my own perspective for a second. They're like, Oh, look who's here. It's the guy with the podcast. I'm like, oh my god, you guys are assholes. So they stopped. And they laughed at me and I stopped talking to him. I was like, Well, now you've enjoyed our conversation. Congratulations.
Amanda 1:13:42
I'm excited. Like, I don't want my kids to grow up. But I'm excited for them to be teenagers like that.
Scott Benner 1:13:48
Yeah. I would like, Tell me more. Why?
Amanda 1:13:54
No, I was just gonna say I like to keep them young and save them.
Scott Benner 1:13:58
I know you feel I've been thinking lately about what it's going to be like to drop bharden off at school. And then take a long ride home. I figure I'll just like devolve into a pool of tears and you probably will swim in. Yeah. Right. Because like, I kept thinking like, how am I gonna leave her there? Like, my son was two and a half hours alive by car. And I could like, I could get up in the morning and think and on a Saturday and say like, I'm gonna go see his baseball game today. I could just I could do it. You know what I mean? get my work done during the week and go do it. I could do that. But Arden is going to be at Best Buy car 13 hours away. Oh, she is Yeah. So that means I'm gonna have to leave her there. And I'm pretty sure I can't do that. So I don't know how to explain to her that when I leave I'm gonna suffer back in the car. Back Oh,
Amanda 1:14:54
yeah, I'd be the same way. Yeah,
Scott Benner 1:14:57
but at the same time I take your point, right. Like I want them to get on older, and I want, it's not like we're going to stop it right. And I want them to have experiences and be happy and sad and do all the things that happen. The thing that bothers me the most Amanda about them getting older. It's the medical stuff. Yeah, I was. I was looking at Arden last night before bed. And I thought I let her down. Like I really did, like, I thought I failed. Like I didn't. I didn't figure out everything that that else or before she left. And then I realized I'm like, Oh, God, is that how I've seen like the last 18 years of her life? That's just trying to get her to a place before she left. You know what I mean? Like to a level or something like that. But I know I didn't do it. Like I tried. And like you said earlier like I everything I tried everything I could think of and we got her pretty far in a lot of places her diabetes is definitely not a not a big concern. Or thyroid stuff is not a big concern. But there's other things that we just didn't come up with answers about. And I hate to say that listening to you earlier about like, stuff like joint pain, even your like it just kind of went away after a while, like I reached
Amanda 1:16:18
a certain certain have joint pain, though. Did you say that one time?
Scott Benner 1:16:21
She does sometimes. Yeah, she gets like her kneel hurt or hip. It seems to fluctuate around her hormones, but you can't really tell, you know, stiff necks, which cracks her neck a lot. She'll get headaches once in a while. You know, just like, I'll see her rubbing her hands, like things like that. And we've had her tested for just everything, you know, to the point to the point where I feel bad even taking her to a doctor sometimes to get out, like, you know, like, because they're gonna want a blood test. And then she's like, this isn't gonna do anything. And she ends up being right most of the time.
Amanda 1:17:00
Yeah. You know, that's, that's, that's just like how I am. Yeah. Well, I say to my husband sometimes. Does your feet hurt like this? Or does your back hurt like this all the time? Like, is this just what it is to be normal? But I don't feel like it is. And that's one of the reasons why I don't think, like, I don't feel like I have RA but apparently that's what they say I do. But it just bounces around and just things a Yeah,
Scott Benner 1:17:30
I wish I know. I don't know how to fit like my back. My lower back is hurt for ever. Like, I like it's just my whole mindset. And, and recently, I had to take a steroid pack for something. And I took it in for 10 days on this steroid pack my back loose as a goose. It was amazing. Yeah. And little things like my digestion works off and on. Well, and for 10 days, perfect. My back didn't hurt. I was eating and using the bathroom the way I imagined a person, you know, exists. I was it going on long enough that I was like, oh my god, this is amazing. It's a real turn. And I stopped taking that steroid pack. And immediately my back started hurting again. You know, and I was like, okay, my back's gonna hurt. I guess that's just what happens to me. Do I have some inflammation? And that, you know, maybe, like, that makes sense. You know? Like, I You have no idea. I do not. Oh, are you talking about it? And yeah, and I've had a stomach since I was like, I don't know. 13. But it doesn't make any sense. Yeah. Luckily, it doesn't make any sense at all. So I have no idea. I assume I'll just fall over one day, and somebody else will take my place on the planet and hopefully their back won't hurt. We'll keep going.
Amanda 1:19:05
I think you'll be around for a while.
Scott Benner 1:19:07
Yes. I don't know. You know what I did the other day, so bummed me out. I contacted homeless. My mom is trying to call me. Give me a second. Mom. Let me call you back in a few minutes. Okay. All right. Her doctor is not doing a good job of managing her blood pressure.
Amanda 1:19:30
Well, is she doing better?
Scott Benner 1:19:32
She is my mom had her cancer removed. Yes. When all through chemotherapy, she got remission. Good designation, and now we are getting ready to move her to where she wants to go live. So Oh, that's good. Yeah, unless her heart explodes because her blood pressure is really high. Trying to try to get people to stop that from happening. Oh my gosh. What was I gonna say? Oh, shoot. Right before she called What was I gonna say?
Unknown Speaker 1:20:05
I forget. Amanda, you are
Scott Benner 1:20:07
no help with us.
Amanda 1:20:09
Ever No, I
Scott Benner 1:20:10
I forget a lot. Forget what you said to Oh my gosh.
Amanda 1:20:16
Oh, what you were gonna do? You were doing something, weren't you?
Scott Benner 1:20:20
I was gonna do four. Oh, yes. Thank you Good job well done. Yeah, I contacted the company that hosts this podcast the other day. And I said, I have a slightly morbid question. I'm sorry. And there's no reason I'm asking this. So please don't worry. It's not like a health thing. I've just found myself wondering. I said, I have a podcast that helps people with their health. And what happens if I die? How do I keep it online? Right, so I'm gonna put this, so I'm gonna put this in here, Amanda. So everyone knows. Okay, you contact the company that hosts my podcast for me. It's called Libsyn. And you tell them, hey, the host of my podcast that I love dropped dead. And he said, you would continue to host it for free after his passing. So somebody has to remember to do that when I die.
Amanda 1:21:15
Okay, but I don't like talking about this kind of stuff.
Scott Benner 1:21:19
Amanda talking about dying doesn't make people die. Don't worry about you're fine. If the way people spoke about things made it so you'd be living on an iceberg. And your son would be riding a beaver to school? Because that's where that's what happens to you. So yeah, no. Anyway, I thought that was really nice. Yeah. Like, we'll just host it. The it will host it for as long as we're in business for free. Wow, the guys like don't die. I was like, alright, well, thank
Amanda 1:21:47
you. Yes, don't die. So.
Scott Benner 1:21:49
But anyway, I thought that was good. And I don't know when this like, when this thing stops being helpful to people, like I'm sure at some point in the future technology or insulin will shift. And a lot of what we talked about here won't be as I don't know it valuable, probably. But for now. No,
Amanda 1:22:07
Scott, I think it always will be. Because it's the truth you like you've lived it's nobody gets taught this way of how to really live with diabetes.
Scott Benner 1:22:22
I hope so. I mean, we've put a lot of time into it by now. Hopefully, it's not just, it's not throw away, you know?
Amanda 1:22:29
Oh, it's good. I started. I was trying to find the episodes that I one of the first ones I listened to this morning, but I went and I was listening to the fear of insulin. One like, that was one of the early ones. But then it reminded me how much I really liked that episode. And just and how much it like reminded me too, yeah, don't be afraid to use insulin. So now I'm going to go back through because I listened to a lot of the same ones over and over. But I'm gonna go back to those early ones. And that one, and what was the other one? Great after I just started?
Scott Benner 1:23:11
Oh, there's the ones on the Quickstart list. Maybe the roller coaster?
Amanda 1:23:15
Yeah, stop the roller coasters, something like that. And just, whenever I think I made a comment one time about, like listening to them. It feels like you're like speaking to me. Like I'm always saying like, how did he know that? How did he know to post that episode?
Scott Benner 1:23:34
You know, I have to tell you, that although I think you just I have to tell you that. Um, I get that comments so much from people. Do you? Yeah. How did they like how did he put up an episode today that was so specific to what I'm going through? And I think really, it's just an indication that you're all going through similar things. Yeah. You know, but I know how it feels like it does feel like like, because it happens to me every day. You always hear me say somebody asks a question. I go, Oh, we were just talking about this the other day, you know, and it's not like, it's not like, I'm not making it up. But it's just, it's the world you live in. You know, I can't wait to for Arden to go away to college and to find out. What I'm going to learn next because of our situation changing because we're clearly going to you know, we're clearly not going to stop talking. Oh, yeah. And she's going to have to get through a situation. You know, where she can say to me like, look, I'm good, and I don't think she feels that way yet. Yeah, I listened. Can I be honest, I don't feel that way. I'm pretty good at diabetes. And there's still days where I'm like, What is like, why is this happening?
Amanda 1:24:48
She, she needs you and I actually somebody said to me like, oh, it won't always be like this. You won't be stressed out like he's gonna be looking after it. Like he'll know what to do some day. And I was thinking like, so all this stress and everything, I'm just going to hand over to him. And now this is going to be like his problem to deal with. Like, it's always going to be the ups and downs and downs and dealing with. Yeah, The Rise and Falls, like, I'm not happy about handing that over, I'm always gonna be there to help him. And I'll always educate myself, as long as he wants me to.
Scott Benner 1:25:28
I feel the same way. I don't, I don't want to feel like that. I'm shouldering all this in one day, I'm just gonna look at it and go, hey, guess what happened? You turned 25 years old. Here's all the crap I've been worried about for the last 25 years. Good luck. You know, like, yeah, although I do think there will be an age that I hit, where, like, I watched my mom. And she just doesn't have the bandwidth to like, touch talk about all like, you know, when you're 40 and 30. And you know, your cousin does something weird. And you talk to your sister about it. You know about your sister's problem with her husband, and you know about your brother's problem, boss, like it's all in your head like that. You do get to an age where you just like, I can't, I can't worry about all this. And I don't think it's a conscious decision. I think it just happens because there are things that my mom used to be interested in and concerned with that she just does not talk about anymore. Oh, no. Yeah, so maybe, maybe. So that's the good news. Amanda. Maybe at the end, when you have to lean on something with wheels to get to the bathroom. You won't have to worry about diabetes anymore.
Amanda 1:26:35
That might be soon with me, though.
Scott Benner 1:26:39
Well, I hope that I made I really appreciate you doing this with me. Thank you so much.
Amanda 1:26:44
It's awesome. I'm so it's so exciting. Good.
Scott Benner 1:26:48
You had a good time.
Unknown Speaker 1:26:48
Yes, absolutely. Can
Amanda 1:26:50
we talk once a week now?
Scott Benner 1:26:52
No, we can't. I mean, I'm very busy. Do you know I have to answer an email right now from a person who wants me to call their friend on their birthday and wish them happy birthday. That's funny. Yeah, I can't do that. Amanda. That's a thing. Like I actually at one point, she's like, can you record a video message for my friend? And I was like, no, no, I can't do that. Well, that I get more than you think. But you guys can see. The world of cameo must give. Give people that idea. I'm like, I don't have like I'm working and I have a life and everything. I can't stop and make videos for people. And I said, I really can't do that. I said, I said, Look, why don't you just tell me figure out a way I can talk to her for two minutes on the phone her birthday. And I'll say and then she sends me the date and it's literally in the middle of Arden's moving to college. So I obviously can't Can you imagine if I walked out of Arden's dorm room or like hey, I'll be right back. I have to say hello to somebody for their birthday. My but they wouldn't even let me back in the room. If not, yeah. So now I have to send this email and say I'm very sorry, I can't do this. So I feel bad. But it is not the only it is not the only call. I got like that. Anyway, all right. Well, it was great to talk to you. Thank you so much. Yeah, hold on one second. Sure.
Well, I'm embarrassed to say I did end up making that phone call and saying happy birthday to somebody, I just felt so bad. I couldn't not do it. Anyway, let's thank Amanda for coming on the show and sharing such a terrific and open story with us. And of course, we're going to thank Dexcom makers of the Dexcom G six and G seven continuous glucose monitors. dexcom.com forward slash juicebox. Get over there. Get started. Let's do it. Speaking of doing it, you can get really comfortable luxury sheets for your bed at cozy earth.com. And then do whatever you want to do them. use the offer code juice box at checkout to save 35% on those sheets, the joggers and so much more cozy Earth. Thank you so much for listening. Thank you so much for supporting the sponsors. I couldn't do this without you. I'll be back very soon with another episode of The Juicebox Podcast. Keep listening, sharing. And of course please subscribe and your favorite audio app. If you're not subscribed, but you're listening, subscribe. Just hit follow like in the Apple podcast app or, I don't know, Spotify, wherever you get audio
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