#444 Falling Forward

Growing up with Type 1 Diabetes

Jeff was diagnosed as a child, today as an adult he describes his life with type 1 diabetes.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello everyone, and welcome to Episode 444 of the Juicebox Podcast. This show is sponsored today by the glucagon that my daughter carries. g evoke hypo Penn, Find out more at G Vogue glucagon.com forward slash juice box. Today's episode is also sponsored by the Contour Next One blood glucose meter, you can find out more about ardens meter at Contour Next one.com forward slash juicebox. And don't forget about touched by type one. Learn more about that touched by type one.org on Instagram, or Facebook.

Face shows with Jeff. He's a type one who was diagnosed at a younger age, and then had a number of life issues pop up. A lot of them actually, he does a great job of taking us through them and sharing his emotions.

Please remember, while you're listening 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 health care plan or becoming bold with insulin. As you're listening around the podcast, don't forget to check out the defining diabetes episodes. And those diabetes pro tip episodes. You can find them both right here in your podcast player, or a diabetes pro tip.com. And of course everything's available at Juicebox. Podcast calm.

Jeff Flaxman 2:07
My name is Jeff flaxman. I'm 34 years old have been type one diabetic since I was 12. If I was better at math, I'd tell you the year but I gotta think back through but I was in sixth grade when it happened around Easter and, and managing it since pretty much by myself. Wow.

Scott Benner 2:24
Yeah. And we'll dig into that in a second. But I have to let you know that every time I see your name pop up on my calendar, the Beatle song tax man runs through my head. So I'm glad. I'm glad you said your letter that makes sense to you that every

Jeff Flaxman 2:36
one last name.

Scott Benner 2:37
I just hear the very like, I'm the tax man. Every time I say it, I'm like, Ah, that's gonna fill my head up now for the next 20 minutes. So I'm glad to get this one out of the way so that I can move. Yeah, we

Jeff Flaxman 2:49
can cross that off your list then

Scott Benner 2:50
and move to a different Beatle song. Anyway, so let's see, you have quite a story, Jeff.

Jeff Flaxman 2:57
Yeah, I've had some ups and downs.

Scott Benner 2:59
Yeah. Where are you now just so that as we get 20 minutes into this people aren't, you know, starting a GoFundMe for you or something like that things? Oh, no, no, no,

Jeff Flaxman 3:08
things are fantastic. Now I'm married my wife, we've been together since 2011. So nine years, I've got a five year old daughter's two year old son, both of which are not diagnosed as of this time with type one, but it's always in the back of my mind. Working successfully, I think I teach Middle School in the middle of a pandemic. So it's a lot of fun. Okay, all right, good.

Scott Benner 3:29
Well, I just wanted to do I, you know, I'm not I don't, I don't want by the time we're done the third part of your story. I don't want everybody to be like, oh my this poor guy. So you're good. So but you still have quite a tail. Alright, so let's start again, you were diagnosed in just a sixth grade. Sixth grade, it

Jeff Flaxman 3:46
was April of God 1234. Sometime in the late

Scott Benner 3:52
90s. Sometime in the late 90s. Excellent. You're in sixth grade. I'm going to do by my thinking on that and say that most people are five and kindergarten. And then six plus five is 11. So I'm going to put you around 11 years old. Okay. All right. seem fair.

Jeff Flaxman 4:08
No, I was 12. Because after my birthday in sixth 12 perfect.

Scott Benner 4:12
All right. Okay, everybody. So Jeff's going along living his life. Happy birthday. They sing the song, they eat the cake, and he gets the diabetes. Do you remember much about the but not what you wish for? Would you blow out the candles? I imagine?

Jeff Flaxman 4:24
No, no, not a bit. No, it was a near Easter. And I remember distinctly is my brother always reminds me of it because my diagnosis fell just before his 15th birthday. So he lets me know I ruined his 15th birthday party by being in the hospital. He couldn't have his friends over couldn't have his party because of me. Yeah.

Scott Benner 4:43
It's nice to have a brother, isn't it? Yeah, I

Jeff Flaxman 4:45
mean, he's a great guy. I do. I love him very much, but that's just our relationship. The diagnosis came on. I had started wrestling at that time, which is a pretty demanding physical sport. And after the season ended, I just kind of crashed like before. I couldn't do much constantly tired and just had one of those, like a week long what I thought was the flu what my mom thought was the flu at that time. So it's just you know, you stay in the couch, you feel awful, miserable, can't get up, can't do anything. But I had to go to the bathroom a lot, because you know, the diabetes. And then at one point, it just got, I guess I was probably close to DK, I don't remember. And I just remember what I was saying. That's it. We're going to the hospital. Let's go. But that's

Scott Benner 5:28
scary for parents. They're really you know, now you have kids, you can really imagine if your kid was just lethargic and lying around, you know, how long before you just were like, Oh, geez, this is this is something

Jeff Flaxman 5:41
terrifying? I don't know. I mean, when my youngest was like three months old, he hit one of those fevers above the doctor level. So we had to take him to the ER two in the morning. And that was a horrifying six hours. I couldn't imagine what this would be for my parents. Yeah.

Scott Benner 5:56
Yeah. The first time your kid gets a high fever, you start imagining their heads soft boiling inside of their skulls. And you're Oh,

Jeff Flaxman 6:02
yeah, I mean, worst case scenario instantly.

Scott Benner 6:05
goes, Yeah, it's interesting how you're, you know, you jumped to the worst conclusion. Well, luckily, your mom jumped to that conclusion that got you to the hospital.

Jeff Flaxman 6:12
Yeah, we got there. And it was I remember that I mean, a wave of doctors swarming around me, and probably within the first minute of being there. I heard him say diabetes. Hmm. And maybe 10 minutes after that I was in an ambulance going to a major hospital, where I met, which I hadn't mentioned is the Chicagoland area. So Lutheran generals were I was folding diagnosed. Gotcha.

Scott Benner 6:33
Okay. Do you remember much about the early days of having type one for you, and what that meant, as far as how you managed and you know

Jeff Flaxman 6:43
why, because I was older at 12, I have a very distinct memory of all of it, it was that time, there was NPH. And our insulin is what I was on, take the long acting in the morning. And then I had like a sliding scale. Throughout the day, depending on what I tested that of what I would do before each meal. Not each meal, I think it was just breakfast and dinner, maybe each meal, one of the two. And you'd take that amount. And that week in the hospital, I didn't really get it at first what it meant. Until I had an older I'm guessing he was an endocrinologist came in and just had one of those sit down, come to Jesus conversations with me and 12. And I distinctly recall, he's like, well, this disease basically cuts your lifespan in half. If you take care of yourself, you can make it a little longer if you don't pay attention right now. You'll be dead before 40

Unknown Speaker 7:36
knows Oh, okay.

Scott Benner 7:39
So he wasn't dressed like a clown or anything like that. He wasn't Oh,

Unknown Speaker 7:43
no, it wasn't a patch

Scott Benner 7:44
that wasn't there that day. He wasn't going for as well. So interesting. He he went for I'll shock you into it, which I've heard from a lot of people is not a valuable management tool from doctors. But how did it work on you, maybe it works perfectly on you. Ah,

Jeff Flaxman 8:00
it worked really well, that honeymoon period, the first few months of having it, I was awesome. at it. Like numbers, were always good constantly testing, writing it down in this little Journal of what we need to have there. And I remember at that time, we didn't go to an endocrinologist, my family doctor took over managing my diabetes care. And they did a great job. Well, you do all the people, they're pretty close. But looking back on it, I want to ask my parents, what the heck are you thinking? Why didn't we go to a real endocrinologist for this stuff for how serious it was? But 12? I didn't know the difference. Sure. But that first one, he came back in the low fives that I had during that honeymoon period to where they're like, Oh, he's so good at this. This is great. Forget testing twice a day, you can probably test three times every two days, and you'll be good. And so that was it. So back then, that was the level of knowledge. And also I guess you're not in an endos office. Right? So yeah, yeah. So I think there's a little delay there for it. But I didn't really have serious lows or serious hires. I mean, it would roller coaster constantly. And now that I have a CGM and I'm using that I I can't imagine what was going on in the in between times, there has to be 36 hours without a check.

Scott Benner 9:16
So you were basically honeymooning, which we all kind of now understand is just a time where your pancreas is just working for a while off and on, like sputtering to its to its end until that organ became useless, right. And the By the way, for the people listening who know that the pancreas still does some things after it doesn't make insulin anymore. I know we all know just

Unknown Speaker 9:38
I know that. I only look at it through the diabetes.

Scott Benner 9:40
Yeah, useless for diabetes, let's call it that. useless for insulin. So but I'm just fascinated by that. The idea that they didn't understand that this was going to, you know, get worse at some point, you know, and your pancreas was not going to be helping anymore, and so they tell you the exact wrong thing. Which is you don't even have to Look that off and just maybe a couple of times every three days when really what you should have been doing is looking more frequently. Right when this happened, and on top of it, it was

Jeff Flaxman 10:08
there. I was being taught to like I was a type two at that time.

Unknown Speaker 10:12
Yeah.

Jeff Flaxman 10:12
You probably say new most being a family practice.

Scott Benner 10:15
Late 90s. Doesn't seem like that long ago to me

Jeff Flaxman 10:20
that long either. But I'm 34 now 12.

Scott Benner 10:24
Just like it is not long ago. I'm halfway to old.

Jeff Flaxman 10:28
Sunday. It's not really

Scott Benner 10:29
No, no, there's once in a while I get up in the morning and my heel and my ankle hurt. And I think, how did that happen?

Jeff Flaxman 10:37
Do I can't place this this bruise. I don't know where it came from.

Scott Benner 10:41
I wasn't running yesterday or anything like that. Like, you know, I didn't jump off of something. I didn't kick anything. It's just doesn't seem right. But no, I mean, I hear you. I'm just saying that. I guess even for me, as somebody who talks to people a lot about this, if you tell me late 90s. There's going to be somebody who diagnoses you in a hospital doesn't insist that you go to an endocrinologist, send you to a GP who doesn't appear to understand diabetes really at all. I just that feels like it would be an older problem. But I'm assuming that stuff still happening. And we just don't think of it that way.

Jeff Flaxman 11:18
I mean, it probably does in some places where it's still there. Yeah. It's medical care is not exactly consistent across the 50 states.

Scott Benner 11:25
No kidding. Okay, so there you go here, do you? Do you then slip into this idea of we'll just look every once in a while. And then what happens then? Yeah,

Jeff Flaxman 11:33
I mean, that's what it became, like, Oh, I guess that's okay. So at that point, I'm probably four or five months in, I start, I'm still testing those times a day. But I stopped writing them down because I'm a kid. I'm 12. And I'm not taking the time to do that. Yeah. So I just stopped. And I mean, the the weird thing, we'll get to it, but my parents being divorced, we're not on the same page with that. And they took a very hands off approach and like, well, he's got it. The doctor says his numbers are good. So he can handle it. And I did. And they didn't know anybody else with Type One Diabetes. So there's nothing to compare it to. Right. Right. They had no idea. They heard what they heard from the general practitioner, and he said, things are doing well. He's taking care of himself, we're not concerned.

Scott Benner 12:17
And so that's that.

Jeff Flaxman 12:19
They just my mom, dad, like, well, he seems to have it under control. They had an idea of what was going on. But meal times, I would do the sliding scale correction, I would give all my injections since the day I was diagnosed, they never did those for me. Just

Scott Benner 12:34
that's how it worked. Were they checking in a one See,

Unknown Speaker 12:38
um,

Jeff Flaxman 12:39
the general practitioner did. But I couldn't tell you what the numbers were after that first one, I just know The first one was really low. And then it might have been every six months they check and they won't see after that.

Scott Benner 12:49
But you don't recall anyone saying to you, Hey, this is getting out of hand, or

Jeff Flaxman 12:53
I don't think they ever did. I mean, there were times I might have gotten to low eights type area. throughout those young junior high and early high school years. We'll get to it the story gets more complex, and then a one c testing stops, eventually we'll get to that. Yeah.

Scott Benner 13:08
Well, I just think that I'm trying to I don't know, obviously, but the ADA sets standards for a one C, and doctors who know and doctors who don't know are probably following that they probably just look at that test and go, you know, like, you don't I mean, like you and I now think of a one c? You know, as one of the one of the measurements we use to try to figure out if we're doing a reasonable job, man is

Jeff Flaxman 13:34
a decent benchmark nowadays.

Scott Benner 13:36
Right? Right. But but the I guess my point is, is that it's making me think about like, your story is making me think about Arden being diagnosed with hypothyroidism where there's this range that it says is normal. And I don't know if people understand where normal range comes from for like, you know, your thyroid test, for instance, but it's just a most people tested, fall between here and here. And that makes this the range. So if your number falls in that range, many doctors will just look and say, Oh, you know, the range is, I don't know, five to 10 urinate, you're good. That's it, just you know that that's how it works when when they don't have a real drill down understanding of what they're looking at. They're just really looking at a number from a test and a number on a chart and you fall into that number and I'm wondering how much of that didn't happen to you and doesn't still happen to people where maybe back then the ADA had a once he said it eight or I don't know where

Jeff Flaxman 14:35
I couldn't tell you what it was seen eights in there like sometimes he would say well, you seem to be going a little higher and maybe you should check your blood two hours after you ate a meal.

Scott Benner 14:47
That was it. Like Like a let's see looks a little higher. Let's test a little more frequently.

Jeff Flaxman 14:52
The you want it to be about 150 to 180 after a meal and my 13 year old stupid kid brain there's like yeah, oh Okay, I'll do that every third day. Maybe

Scott Benner 15:03
we'll make that a Thursday thing. And no, I hear so okay, just you know, in perspective like that's it now I don't even know where the you know the quote unquote like the recommended a one C, is it seven now or something like that I'm not even sure.

Jeff Flaxman 15:21
I couldn't tell you I'd imagine seven me my endocrinologist now who I have a good relationship with. I'm in the low sixes running there, and he seems pleased with what's going on. And I'm happy Of course, I'd like to do better, but I'll take a low six.

Scott Benner 15:34
Okay. Yeah, I'm googling right now. I have 2018 here.

This is the actually diabetes.org. So this is the ADA.

Oh, they're just giving you the if you're able to see has been between 5.7 and 6.5. This is probably for type two people. You're pre diabetic. If you have a one save Six, five or higher. You are diabetic health line has from 2018. For years, the American Diabetes Association has recommended that all people with IBS aim for target a one c below 7%. Even more stringent. They're not recommending below. So in 2018, they started recommending below 6.5. But for a while it was seven. I wonder what it was prior is maybe the internet doesn't go back quite far enough on this one for me.

Jeff Flaxman 16:34
Somewhere, but I mean, yeah. Or to a point where there is serious concern.

Scott Benner 16:38
Right? Right. Right. Now here you Okay, so you're chugging along. This is basically how you're living your life with with diabetes.

Jeff Flaxman 16:46
Yeah, I mean, I was carb counting didn't exist then. Or at least not where I was trained. So I was on an exchange diet. So starch, protein, fat, and I was very, and still to this day, very regimented in what I would eat, where I would have the exact same breakfast every day for like two years straight and never change it.

Scott Benner 17:03
Did you ever, like hate that? Or was it just the thing you did? I

Jeff Flaxman 17:09
think I did it first. But it got to a point where it just became so ingrained in me. Even now I'll make my lunch for school, it would be the exact same lunch every single day. I mean, breakfast today was the same as it was the past 20 days, English muffin with peanut butter and coffee and that's just what I go.

Scott Benner 17:30
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I so would love to rerun your life in an alternate reality and see if that's how you if you just love eating like that or if it it's just from the diabetes because I do know people like that I've worked with people who every day they eat the same exact thing and I'm just like it's fine. acid

Jeff Flaxman 20:00
is what I love it. It's just that's, that's normal to me. Yeah, that's what I did my childhood. And the only places it changes is dinnertime because those are more robust meals in our family and even as a child, it was gotcha. Then I would always have highs or lows after dinner because the meal was never consistent, but it never fit.

Scott Benner 20:17
Right, right. So what would you consider to be the first I'm looking for the right word. I don't want to say tragedy, but maybe tragedy is the right way. What, what, what?

Unknown Speaker 20:28
What was let's start going down that rabbit hole.

Scott Benner 20:30
Yeah, what was the first major hiccup I guess, in your life.

Jeff Flaxman 20:35
So we'll backtrack a little bit there. So sixth grade, I get diagnosed, we go all the way back to second grade in school. So four years earlier, my parents split up separated with and it's in the mid 90s. That wasn't that uncommon at that time. Lots of kids had it. And I think in no disrespect at all, but the best way to describe my mother was a sometimes functional alcoholic, I think is the best way to say it. Okay.

Scott Benner 21:02
So meaning that sometimes she was blackout drunk.

Jeff Flaxman 21:06
Yes. Sometimes she was out of it. And in second grade I, I was well aware of what was going on at that time. I know my dad would kind of hint and asks, How is mom today? And we'd say, Oh, it's a good day. It's a rough day. type thing.

Unknown Speaker 21:17
I tell you, Jeff, there were other girls, but this is the one I fell in love with. Sorry, buddy. Yeah, I

Unknown Speaker 21:24
mean, I

Jeff Flaxman 21:25
never got that into it. My dad was trying the whole custody battle for it. But again, it's the mid to early 90s. Dads don't win custody battles very often. Right? It just it wasn't gonna happen. He was probably a more qualified parent looking back at it.

Scott Benner 21:40
Can I? Can I ask you real quick? How involved? Were you in the drinking? Like, did she did you? Were you pouring drinks or

Jeff Flaxman 21:48
bringing mommy I was never She. She always tried to mask it and hide. Okay. My brother and I brothers older. We always knew like we were well aware. And there were times as I got older, it got pretty confrontational where I would find her bottle of wine and just dump it in the sink and be a fight. And I'm an 11 year old kid doing this. Yeah. Like I'm not dealing with this today.

Scott Benner 22:10
And that really is how I felt like if I get rid of this wine today, it'll be easier.

Jeff Flaxman 22:13
Yeah, today, it'll be easier. Yeah. It was kind of a constant. But by no means Was she a bad mother. I mean, we still had food on our plate. Every dinner we were still taking care of and well, we weren't rich by any means. But you weren't poor.

Scott Benner 22:25
But she was struggling with alcoholism. Like very mightily

Jeff Flaxman 22:29
other substances to she she likes to she smokes quite a bit.

Unknown Speaker 22:32
She saw. That

Scott Benner 22:34
was the least of her. I just have to ask you. Yeah, maybe I don't maybe you made it clear. Just you're just talking about weed, right? Oh, yeah, totally. Yeah. Okay. All right. So

Jeff Flaxman 22:43
then I, it was explained to me. Oh, shoot this layer. That's fine, though. It was African violence we had growing in our backyard sometimes. Oh,

Scott Benner 22:51
is that how it was? Told you?

Jeff Flaxman 22:53
Yeah, that's what it was. It's like, Yeah, okay. I'm sure that's what it is.

Scott Benner 22:56
I have one on my windowsill in my kitchen. I hope my kids don't want they believe that I was running a small train. Don't let them listen to this. They might get confused about that. God, if my kids end up listening to this, I'm dead and they just miss me. Okay, sorry.

Jeff Flaxman 23:15
I'm pretty scarred to this. Now, but that's fine. No, Jeff. I

Unknown Speaker 23:18
didn't mean I didn't mean not thinking okay. All right.

Jeff Flaxman 23:22
No, so the divorce was probably the early one. And that that was rough to deal with. But I had gotten used to it. Like I just grew to accept. That's what it is every other weekend and Wednesdays are with my dad. Other days. I'm with my mom. We live in the same town. It's constant. Like those two, it's those the type of divorce where you didn't want to be in the same room as the two.

Scott Benner 23:43
Yeah, my parents had

Unknown Speaker 23:45
co parenting

Scott Benner 23:46
as you'd say today, right? No, my parents had one of those. And I felt like it. It was really difficult on me for a large number of years. And oh, yeah, it didn't, it just it doesn't just go away. Whenever, you know, everybody settles into their new life. It wasn't it definitely wasn't like that. I think I've told people before here, like I used to wake up in the middle of the night and stare out a window on the second floor. And every time a car would drive by, and the lights would appear before the car would appear. I would let myself believe That was my dad coming home. So I could feel better for a couple of seconds before, before the car would drive past the house. And back to like, you know, harder than that would lead me downstairs to dig into the back of a coat closet, the plot of family portrait that my mom hidden, I would just stare at it for a little while till I felt better and go to bed. And I was only like maybe 13 then. So that was you know, I don't think people understand what they mean when they say we're gonna get divorced. It'll be better for the kids. Actually, what would be better for the kids if you stop yelling at each other and

Unknown Speaker 24:49
just figured it

Scott Benner 24:54
would be better together? Yeah, get me out of here and then do your thing. Whatever you're gonna do, you've been in it this long. But anyway,

Jeff Flaxman 25:04
if the divorce was the constant that happened, we knew it was there. My dad had a constant battle to try and win custody. And it's just, it wasn't in the cards for whatever reason. Maybe a mom had a better lawyer, I don't really know, I was too young to understand that she kind of kept us out of it. It just never happened.

Scott Benner 25:22
And, and you were about how old while this is going on just because I'm trying to move. So

Jeff Flaxman 25:28
second grade. I think you're eight or nine, somewhere in that range.

Scott Benner 25:34
It's all up and so your dad kind of gives up on the custody thing at some point in that eight, nine year range? Well, no, he never gave Oh, no. No kid with a constant constant

Jeff Flaxman 25:44
fight. Like eventually, it got to the point where he'd get a whole week, a month on top of all that, or half the summer he got more and more visitation and stuff and we keep fighting for it, but never never got the overall win. Wow. He

Scott Benner 25:56
really was trying. That's great. Yeah, yeah. Good for him. Well, that's, that's lovely, actually. Okay, so we're gonna go forward. Yeah. We're gonna call divorce. Tragedy one, I think we're gonna call diabetes tragedy, too. Yeah. Third,

Jeff Flaxman 26:12
when we move forward to eighth grade, I'm pretty well managed by now. Things are going well. My dad started the online dating world. And you know, AOL, if you remember that you go to your message board. So he was a single parent message board and found a bunch of girls started talking to them instant messaging before there was he online dating eHarmony. He found some girlfriend that way. He just he was, she had four boys of her own. And then they were end of eighth grade year, they bought a house, they were gonna move in together. Me and my brother are four step brothers, all of us. We're going to be together.

Scott Benner 26:50
For a while. We're going to move in, like full time. We're not just just, yeah. So just the time that he had you for Okay.

Jeff Flaxman 26:58
Yes. Well, it makes it messy. My brother who was 17 could have moved into full time. He could have gone to court and said I'm done with you, Mom, I believe in. But he didn't

Scott Benner 27:08
stand behind for you. Did you ever think you guys were talking about it?

Jeff Flaxman 27:12
We did. And eventually we'll see. He made the choice to leave.

Scott Benner 27:15
Yeah. I it's hard not to everything. Oh, yeah. And

Jeff Flaxman 27:21
may, April, May of that eighth grade year before graduation? My dad gets diagnosed with lung cancer.

Unknown Speaker 27:28
Yeah. Okay.

Scott Benner 27:31
Well, I guess let's just hit the Was it a shock to him? Or, you know, was he a smoker and was like, Oh, I got

Jeff Flaxman 27:38
heavy heavy smoker, work construction. So you've got both of those working against them. Right? how all of us were caught off guard by No kidding.

Scott Benner 27:46
How old was he around that? 4747. Okay, so a young man ends up with lung cancer double, or do you remember?

Jeff Flaxman 27:54
It was one but it was stage three at the time? I think four.

Scott Benner 27:59
So how does he talk to you about that?

Jeff Flaxman 28:02
Um, just kind of sat us down and told us he's like, Look, this is it. I'm gonna do the chemo. We're gonna move through it. And we're optimistic.

Scott Benner 28:11
Yeah. How much understanding Did you have that? It might not? end? Well for him?

Jeff Flaxman 28:17
I'm about a month and a half in,

Unknown Speaker 28:20
we figured it out.

Unknown Speaker 28:22
Could you just see him declining?

Jeff Flaxman 28:24
Oh, it was it was quick. Yeah. got diagnosed. And then three months later, and the summer he passed. Okay.

Scott Benner 28:32
Ah, all right. So how does that one mean, I guess I'm it's hard. I'm running through it in my head. I guess the biggest impact to you besides your dad being gone, which was obviously the largest impact is that you're now with your mom full time and there's nowhere to go right? Or does the orders. Did your dad ever get married to the woman that he was what he

Jeff Flaxman 28:51
did? He got married to my stepmom and she stayed.

Scott Benner 28:55
Okay. So did you continue to see her?

Jeff Flaxman 28:59
Well, the court said we couldn't, but I just did it anyways.

Scott Benner 29:05
Were you like living close enough to each other that you could make your way?

Jeff Flaxman 29:09
It wasn't the same district so it would be from school. So I went to high school. Some days I tell my mom, I'm staying at my stuff. I'm staying and I'd stay there. And then the next day I take the bus back home my mom's house and go back and forth. It was freshman year.

Scott Benner 29:26
Did your mom fight you on that? Or do you think it was like he gave her the night off?

Unknown Speaker 29:30
She loose functioning she

Jeff Flaxman 29:32
had lost a lot more control the disease by them first. Okay. All right. She been further and further. How is

Scott Benner 29:39
all this impacting your, your type one care? Like I'm trying to imagine you fitting that into all of that chaos?

Jeff Flaxman 29:47
It was rough. Like I mean, I still because I was so regimented. I still followed I eat this at this time I do this testing. I stopped testing as much I had One kind of scary low spell, I remember that my brother woke me up out of. And then here drink this orange juice, you moron, you'll be fine. That mean, besides that one low it was, I'm not gonna say it was well managed, but to my knowledge at the time it was well,

Scott Benner 30:17
so you're up to your expectations. So what

Unknown Speaker 30:20
was that go into? What

Scott Benner 30:21
was that really the focus that? Don't get dizzy don't pass out. And you're doing well?

Jeff Flaxman 30:27
Yeah, I mean, I can tell when it was really, really high blood sugar because the urination and everything which now I realize, Oh, that's just because ketones was spilling over and my my liver is slowly killing myself right now.

Scott Benner 30:38
Hmm. So you didn't correct those situations though, right? You just knew your blood sugar. No, the idea

Jeff Flaxman 30:42
of a corrective Bolus just didn't cross my mind. And I say Bolus, but that doesn't. It wasn't a Bolus didn't cross my mind. Like if I was high. I'm like, Alright, so I take a little more in the sliding scale. I'll check again in the morning. And I waited up. That was

Scott Benner 30:57
it. So it's, it's next time I'll be a little more aggressive because I can because I'm peeing a lot right now. And I know I'm high.

Jeff Flaxman 31:03
Yeah. So I know, I need to take more at the next meal. I'll bump up that sliding scale. And I think, gosh, by that time, I wasn't mph. And our I don't know if you know they had that like 7030 blend, or is like the mix. And I was taking that one at that time through a pen, which was much more convenient.

Scott Benner 31:19
Wow. It's so interesting that your experience with diabetes mirrors my friend Mike's So specifically, I'm I'm always going to be sorry that I didn't get him on here to talk about it. But he passed away last year. Oh, I'm

Unknown Speaker 31:32
terribly sorry. No, no,

Scott Benner 31:34
I thank you. But he he is experienced, it's just so like it. It makes me feel like this was just the time with diabetes. And this is just how it was done. And and I know

Jeff Flaxman 31:46
there was better because I know pump technology was starting to come out. I mean, this is my dad passed in 2000. So the early stages. I mean, they've been there for a while, but they're starting to become more and more mainstream at that time.

Scott Benner 31:59
Okay, but but nobody was talking. Yeah,

Jeff Flaxman 32:02
it just wasn't even brought up that idea. Wasn't there? Like I'd heard about it in the magazine. Like that's stupid. I don't want to be a robot.

Scott Benner 32:09
Yeah. Okay. All right. Okay. All right, Jeff. Yeah, let me wrap my head around this for a second throwing a morning. Cheese. Sometimes I do these more midday and I'm a little more awake. I'm not not awake right now. But it's, um, you know, this is the part in the show where, you know, like a secondary character comes in and has like a happy moment so that we all don't look for a window to jump out and

Unknown Speaker 32:37
we'll get there. Yeah. Okay.

Scott Benner 32:41
I'm sorry about your father, your father passes away from lung cancer. Sounds quick. Not that this matters. But Mike's dad passed away from cancer around the same time very quickly. He says, I'm just now realizing that I met my wife in probably around 94. ish. And she was still in college. And I remember being I was visiting her. She went to college about an hour and a half away. And I think everyone knows what I mean. When I say I was visiting Kelly at college. I was visiting Kellyanne Conway,

Jeff Flaxman 33:15
you guys are playing straight like it

Scott Benner 33:17
get what right? Yeah, we were just go fish a lot of times, and then right to charades. Then I would go home. And Mike called and said, Excuse me. My dad has cancer. He thought he had a hernia. So he went to the doctor. And I remember Mike going and he did have a hernia. I was like, okay, yes, but he also had non Hodgkins lymphoma. And he went from like this big robust guy, to just, I mean, he shrunk to a shrunk away and died. And in two months, you know. And yeah, it was it was really something. And Mike's mom passed away a number of years later from cancer as well. But anyway, I remember driving feverish Lee home through like a state and a half to get to Mike to talk to him. And it had to have been just a couple years before you were experiencing this. But at a younger age, Mike and I were We were in our early 20s. At that point, anyway. Okay, so you're trying your best to stay with your stepmother as much as you can. Your mom? Yeah, I mean, it's lining.

Jeff Flaxman 34:26
It's a rough mix, because at that time, my brother was a senior in high school, and he just moved out of my mom's house, he never went back.

Scott Benner 34:33
Okay. And for all the reasons for all imagining,

Jeff Flaxman 34:36
yeah, so he and I talked a lot. And we communicate. We both did the same sports in school on the same teams. But he just said, I'm not going back there. And I had to,

Scott Benner 34:47
yeah, was there ever any conversation of like, I wish you could come with me.

Jeff Flaxman 34:52
Or if we didn't, we kept our emotions to yourself. Gotcha.

Scott Benner 34:58
We're not to this point. matters. But where does the senior in high school go to live when he leaves his house?

Unknown Speaker 35:05
When he left my stepmom,

Scott Benner 35:06
he Oh, he actually went there and she Yeah,

Jeff Flaxman 35:08
okay, you just stay there. We all had rooms there. He just stayed and never left and my mom was too far down that alcohol pipe. She couldn't fight it.

Scott Benner 35:17
Gotcha. I understand. What's it like living at home with your mom by yourself?

Unknown Speaker 35:25
Um,

Jeff Flaxman 35:26
it was hectic. But that's the best way to say it. It was rough. I, we had gotten to a point we understood each other pretty well, we still would joke and have fun. And I just knew like, well, you're drinking so I'm gonna play video games or hang out with my friends or do my own thing. I'll wake up when I need to catch the bus by myself. I I had it figured out by them.

Scott Benner 35:47
And I'll get older one day, and I'll leave like my brother did.

Unknown Speaker 35:49
Right. And like, and

Jeff Flaxman 35:50
eventually I'll just get older. And that'll be the end of it.

Scott Benner 35:52
I see. Was she working?

Unknown Speaker 35:56
Yes.

Scott Benner 35:58
Trying to imagine how you're getting your medical

Jeff Flaxman 36:00
blueprint company. She worked in ran blueprints that have prints art supply store?

Scott Benner 36:05
I say okay, so enough that she could pay for your insulin and that sort of stuff.

Jeff Flaxman 36:09
Yeah. Well, my father's Carpenter union, like insurance kept and then the all that pension stuff. So money was there for my brother. Okay,

Scott Benner 36:19
okay. Were you in charge of going, like, making doctor's appointments and getting your medications and things like that?

Jeff Flaxman 36:26
No, that again, that's the functional part. She still kept all that together.

Scott Benner 36:30
Okay. She's trying. I mean, I guess for people who don't under like, don't see alcoholism, as a, as a disease would probably be like, what, you know, how could you do this, but she's in her lucid moments, doing her best to take care of what she thinks of as your most pressing needs. Correct. Gotcha. Wow, that's really kind of pretty beautiful, you know, in a strange, strange way.

Jeff Flaxman 36:54
Yeah. in a weird way, but it is. Not. I

Scott Benner 36:56
mean, you know what I mean? Like, it's just, I mean, imagine, imagine having a couple of minutes of looseness, you know, in a day, and when that happens, your your responsibility kicks in, you say, you know, I have to get Jeff, insulin and stuff like that. That's really, um, it's a it's a, it's an interesting look into, into what it feels like to have a kid I guess, you know, even when you're strung because you, you know, it's, it really is interesting, right? If your mom had some sort of adult debilitating cancer that wasn't going to kill her, for example, and she only had a couple hours a day where she could function. No one listening would think, oh, how could she do that? They'd be like, Wow, what a hero. You know,

Jeff Flaxman 37:42
when they relate to the alcohol, that's the stigma connected to the disease. Right?

Scott Benner 37:45
Right. Yeah. Something. Okay. All right, Jeff. Let's not, let's not how much longer Does your mom last?

Jeff Flaxman 37:53
Well, about a year. Okay. She gets into a pedestrian accident crossing the road gets hit by a guy.

Scott Benner 38:02
Well, I wasn't expecting that, Jeff. Yeah, it was rough. Wow. I'm sorry. Ah, I you know, I just felt like we were building to you know, something else. Oh, my God.

Unknown Speaker 38:15
No, it was quick.

Scott Benner 38:16
Were you with you weren't with her. Were you know, No,

Jeff Flaxman 38:19
I wasn't home. She went out and Oh,

Scott Benner 38:23
my God. Now you're by yourself. How old?

Jeff Flaxman 38:26
Um, shoot me thinking that sophomore? I would have been

Unknown Speaker 38:32
15

Scott Benner 38:33
Are you okay? By the way while we're talking?

Jeff Flaxman 38:36
It's coming and going.

Unknown Speaker 38:37
I'll be right. Okay.

Scott Benner 38:39
I just listened for everybody else. This was Jeff's idea. Okay, he reached out to me. I'm not torturing him. He wanted to be on the boat. I did this to myself. Yeah, exactly. Well, you know, Oh, my God. Oh, that's terrible. Okay, so, who handles a funeral when there's a 15 year old at home and a senior in high school? Who's not living at home? Like, is that follows family plan? Yeah, family came in. When that happens. Is there any noise from your sister? Like, I'm gonna take care of you now from her sister about like, who like was there a will like who you left to?

Jeff Flaxman 39:17
Well, that was the elephant in the room. That was the weird thing. I was at the hospital because the police came brought me there. And they asked who can we call? So I knew we had family friends that were close. And I said call them

Scott Benner 39:31
yeah. You really didn't even feel like you had anybody left right.

Jeff Flaxman 39:37
Yeah, that form I stepped out there with the two but brain just didn't go to step on that time. It went to my family friends. Gotcha.

Scott Benner 39:44
Okay. Were you in a home were you renting? No, it was

Jeff Flaxman 39:51
a home my parents owned Okay, we're not own the bank owned it but we were there making payments.

Scott Benner 39:57
What happens to that house is it just get absorbed by the bank?

Jeff Flaxman 40:02
Um, no, my aunt put together everything and sold it.

Unknown Speaker 40:07
She was and that

Scott Benner 40:09
money goes to I'm assuming debt and then to you and your brother

Jeff Flaxman 40:12
debt first so most of it debt and the rest was split between my brother.

Unknown Speaker 40:17
Okay? Wow

Jeff Flaxman 40:21
I'm my brother's in college so he can't afford a house or anything and he's going through what a college freshman goes through so he's got his own hobbies you call him out in school? All right. Well not bad but you know the college experience.

Scott Benner 40:35
Yeah, no, I understand. Yeah, there's he's, he's focused on other things. And where do you go to live? That family

Jeff Flaxman 40:43
I went home with that night I just they took me on. Wow, that's

Scott Benner 40:49
that do you bounce around from there? Because, you know, I

Jeff Flaxman 40:53
actually stay with them. I don't keep traveling back and forth to my mom's at that time.

Scott Benner 40:57
Okay. It was was your mom's death the end of your relationship with your stepmother?

Jeff Flaxman 41:05
No, no, I was with her. She comes into the store again, I'm

Scott Benner 41:07
a little bit worried. Okay. Geez, you really should write all this down, by the way, cuz this isn't

Unknown Speaker 41:13
nice. I've tried

Scott Benner 41:15
at least a season and a half of the Friday Night Lights TV show for one of the characters so you could kind of there I can see it. Yeah, no kidding. We just put a football game around this and some sad music. And I think we'd be okay,

Jeff Flaxman 41:27
Texas, playing in the Qatar summer. And I

Unknown Speaker 41:29
really feel like this would work. Like goodness.

Jeff Flaxman 41:34
A new family takes me in Yeah. They try to understand diabetes, they transition me to a new doctor. The benefit at this time because I'm technically an orphan, I guess you'd say free healthcare from the state that that's

Scott Benner 41:48
finally something good happens.

Jeff Flaxman 41:50
program. Everything's covered. I'd pay a dime for anything ever.

Scott Benner 41:54
Does that lead you to? When do you get to a more modern way of management? When do you start counting carbs? And oh, God,

Jeff Flaxman 42:03
not till after college?

Scott Benner 42:04
No kidding. Okay. All right. It's like

Jeff Flaxman 42:05
2000 to 2008 2009 when I started counting carbs, and we're only in 2001 right now.

Scott Benner 42:12
So these next few years, are you living with this family who bring who brought you in and finishing high school?

Jeff Flaxman 42:17
I lived with them for a year. And then they had a family strife, a divorce there. And I just said, You know what, I don't need this again. And we agreed I just moved in with my stepmom for the rest of high school there. She took me

Scott Benner 42:28
was that was that traumatic to watch the family that took you in? start experiencing the things where your life started to unwind years earlier?

Unknown Speaker 42:37
Not really.

Unknown Speaker 42:39
No, you weren't?

Unknown Speaker 42:40
I think I'd

Unknown Speaker 42:41
become numb to it by that.

Scott Benner 42:42
Okay. And so I have to ask you at this point, are you doing anything to help yourself that? I shouldn't have said Help yourself. But are you? are you managing your pain anyway? Are you doing drugs? Are you drinking? Like, are you how are you handling everything that's happening to you?

Jeff Flaxman 43:00
None of it I I started working a part time job at a local restaurant and just I focused myself on work on school on sports, and that was my escape.

Scott Benner 43:12
And that's just sort of your personality to this day.

Jeff Flaxman 43:15
I mean, I drink now so but I'm also 34. But I know I never went in. I guess the call that the amazing part. I just never saw that as an option. Gotcha.

Scott Benner 43:26
Well, that's excellent. I doesn't occur to me. My life's not been great. A lot of different junctures. And I don't I've never I've never been into numbing myself ever. And I don't know. I'm not I'm not morally opposed to it. If you know what I mean. And I just did yeah. And I just don't, and I never have like even I'll tell you right now I'm I turned 49 the other day. If I've had the equivalent of a case of beer in the last 30 years, I would say that's probably an over exaggeration. Oh, good. No, yeah. I just it just does not occur to me to do and I don't

Jeff Flaxman 44:04
at that time, that my age of 1516 1718 up through high school. I never touched the stuff. Gotcha.

Scott Benner 44:11
I'm friends were you just it was just friends and work and just young friends.

Jeff Flaxman 44:18
Sports, some video games here and there.

Scott Benner 44:20
And take care your diabetes.

Jeff Flaxman 44:22
Oh, wasn't perfect in school, but maintained right?

Scott Benner 44:26
GPA? Hmm, is this how do you how do you decide that you want to be a teacher? When does that pop into your head?

Jeff Flaxman 44:33
Um, throughout late high school, I had some good teachers there and I'm like, wow, these guys get it. They talked to me like I'm an adult and I think I could do this. Wow. Okay.

Scott Benner 44:43
And is it a conscious feeling of like, there are gonna be other kids like me one day and they're gonna need somebody like these people.

Jeff Flaxman 44:50
Well, that's a lot of it's like, I can reach an audience of kids. Most teachers can't, because they don't have the shared experience. Right.

Scott Benner 44:57
Are you still in the Chicago area Yeah,

Jeff Flaxman 45:00
we're in the northwest suburbs there. So about a, I don't know, 4050 miles out of the city. Okay. All right.

Scott Benner 45:08
So you go to college for you get into college

Jeff Flaxman 45:13
at Eastern Illinois. So down here you buy champagne. And start as a history major, because I loved history. But early on, I realized the heck am I going to do with a history degree? I mean, that's not really a applicable job skill. And I'm sorry, to anyone who's listening. But I don't know what you do with a history degree besides become a professor or a teacher. So that's the world I went.

Scott Benner 45:35
Yeah. Yeah, I guess poetry maybe would be along there to

Jeff Flaxman 45:39
possibly it's in there.

Scott Benner 45:41
Although Wouldn't it be nice to just pick something like that and just sort of lose yourself studying,

Jeff Flaxman 45:46
get through historic documents understand the past and make a living wage doing it? It would have been great, but it just wasn't feasible, not how it works. Yeah.

Scott Benner 45:54
Do you meet your wife in college?

Jeff Flaxman 45:57
I do. We meet early on in high school in college freshman year. And hit it off pretty well dated the whole time through and kind of ever since. So we've been together since 2004. How slowly

Scott Benner 46:08
do disseminate your life story to someone when you meet them like this?

Jeff Flaxman 46:12
Ah, just sprinkle it in. It's like a little bit of salt on a meal there. You don't want to dump it all at once because it ruins it. They get sprinkled in here and there. Yeah,

Scott Benner 46:18
just your six eight months in and you're just like, Oh, you know, like that time my dad got cancer and then you just roll right past. She's like, wait, what do you say?

Jeff Flaxman 46:26
You just drop a little bit and I told her that the big parts of it their parents deceased and all that but kept the details out of it for

Scott Benner 46:33
No kidding. I would make sure she was pretty locked down before I started telling Rob

Jeff Flaxman 46:37
didn't want to scare him away too fast. I'm lucky she decided to stay with me anyways, so I got

the keep that one say without all this. You're saying? Oh yeah, I mean, just my personality and kind of a don't budge. I'm stubborn. And you know what? standard guy thing and she's the same? Yeah. No, I

Scott Benner 46:53
I always wonder when Kelly's gonna grow tired of all this and just be like, Alright, that's enough, buddy. Yeah,

Jeff Flaxman 47:01
this was fun while it lasted.

Scott Benner 47:03
We've had this conversation one too many times. But no, no, that's okay. So you guys meet in college? And does she I'm not looking for where she works. But she have a similar path that she

Jeff Flaxman 47:16
does. Yeah, she's a teacher. Also, she taught for a while. She stays at home with the kids now for a second was born. She taught the elementary grades. So kindergarten and second.

Scott Benner 47:25
Teachers seem to fit together really well.

Jeff Flaxman 47:27
We do. One bonus of this. This COVID time here. My daughter started kindergarten and thank god my wife was a kindergarten teacher.

Scott Benner 47:36
Yes. So she's just so your your poor daughter is getting some one on one attention. Hmm.

Jeff Flaxman 47:41
Yeah, she's, uh, that poor girls gonna be impacted too much by she,

Scott Benner 47:45
she won't know anything. She's just like, I don't know, my mom just pulled out a bunch of papers. And we started going.

Jeff Flaxman 47:51
And we empty the crawlspace and built a little classroom in our dining room the other day. That's really nice.

Scott Benner 47:56
Okay, so you're out of college. Now?

Jeff Flaxman 48:00
Well, in college is where it gets messy to wait, hold

Scott Benner 48:02
on, I'm sorry, something else is gonna happen.

Unknown Speaker 48:05
Not bad, but

Jeff Flaxman 48:06
the insurance and stuff. This is where when I was less than 18 years old, the state covered everything.

Unknown Speaker 48:13
Okay. But

Jeff Flaxman 48:14
as I turn 18, the state does not cover my medicine.

Scott Benner 48:18
And you're in college.

Jeff Flaxman 48:19
And I'm in college and insulin prices aren't what they are now. But they were still expensive. Sure. Well, how do I get the whole like school insurance? Can I get on yours? And like, Well, you could but there's not enough kids that are part of it. Your insulin would not be any cheaper here than it is retail at the store.

Unknown Speaker 48:36
What do you ended up doing?

Unknown Speaker 48:38
I paid for it.

Unknown Speaker 48:40
You were working while you were in school.

Jeff Flaxman 48:43
I was a resident assistant for two years there. And then I stayed summers on campus to work there that whole time and just worked my way through. I mean, I got a lot of grants because of my situation having no parental income. So school was relatively covered by grants and all that was able to skate by

Scott Benner 49:02
by so I'm going to take a detour for a second and ask you sort of a bigger question. Sure. I sometimes look back on my life. I was adopted like it, you know, in the in the first days of my life, my parents divorced when I was young. I became sort of my de facto father for my two younger brothers. I watched my mom struggle I got jobs in places where I didn't fit like I used to work in a sheetmetal shop and I'm not a sheetmetal worker, but I went and I did it you know for five years. Making people listening now would be shocked by this but i think i think i got that job at for 25 an hour. And by the time I left it five years later, I believe I was making 575 an hour so it was a real you know real moneymaker for me.

Jeff Flaxman 49:51
It's a good percentage growth though. If you look at it that way.

Scott Benner 49:53
If you look at it that way, I was really on my way to something. Probably by the time I was 60. I would have been making somewhere in the seven Are $8 range? Nice? Yeah. Oh no, for sure. Really hard work, tough extreme conditions. I didn't belong there not meaning like I was too good for it or anything like that just I didn't have the skill set. I didn't grow up around people who worked with their hands. That I was wrong, I was out, I was a fish out of water. I left that I'm still on the hook to, you know, I used to tease my brothers, I was like, my kids are gonna be great, because I've made every conceivable mistake with you guys. So now I can I can look back and see what's going on. Anyway, there's a trial by fire nature to my life. And there certainly is to yours like you, your life actually makes my life seem like I was part of the Brady Bunch. So how valuable do you think that is? Now as an adult with kids? The struggle?

Jeff Flaxman 50:51
It's tough. Because I, I want to raise them the way I know. But my experience there is they're not shared by other people. So what I think of it, this is what you have to do. These are the essentials. Apparently, I guess I'm asking a lot of my kids at times like, well, this is just what you have to do. There is no choice type thing.

Scott Benner 51:09
So it's skewed. Obviously skewed your understanding of like family life and your that's probably something that you have to work through everyday. But what about you, you personally like? Are you a tough person? Like, could I just pick you up and take you to another country and drop you alone? Where you didn't speak the language? You think you just be okay.

Unknown Speaker 51:28
I'd probably survive. Yeah,

Scott Benner 51:29
yeah. No kidding.

Jeff Flaxman 51:31
I find a way to get through it. I mean, that's that that hardened exterior, I guess, right? Just, I can pretty much take about anything you're gonna throw it.

Scott Benner 51:40
I usually tell people privately, like when the zombies come, you come find me because we're getting through it. You know, like, I'm not going down like that. And I have that sort of like, when things go wrong. I don't think like, I don't have a woe is me feeling ever. I'm always like, okay,

Unknown Speaker 51:59
that's gone.

Scott Benner 52:00
Yeah. How do I attack this? Where do I like where, you know, where's my in here? What can I make work? What am I gonna have to do to get this right for me again. And I know, that's not probably a completely healthy way to live. But I do think it came from how I grew up, I'm imagining you have it a similar,

Jeff Flaxman 52:18
it's that I think about survival mode is what I go into, I

Scott Benner 52:21
look at these are the things that absolutely have to do have to get done. And they will get done. And I'm able to kind of ignore the rest. Do you have any abandonment issues? Like do you feel like your family's about to be taken from you constantly?

Jeff Flaxman 52:33
No, I don't think so at all, I've been very blessed with the people that took me in when they did,

Scott Benner 52:38
yeah, so you have that coverage in your, in your mind, I just I I used to at the very beginning of my marriage, I was very over, aware that like, I never wanted there to be a problem. Because to me, it felt like a problem was gonna just start me down this road that I watched my family go down and didn't end up being the case, obviously, and I don't feel like that anymore. But in the beginning, I just didn't want anybody to fight ever. I was like, if someone fights, you know what's gonna happen, you're gonna move out, this is gonna happen, we're all gonna be broke, my kids are gonna end up raising each other, like you have that like that horrible feeling of like, you know, like, this is gonna repeat itself. I don't feel like that anymore. But I did when I was younger. So I wasn't sure I had that when I was younger. But now I

Jeff Flaxman 53:25
guess I can see through that. And when my wife and I do have an argument, I'm like, Look, this. This is not worth the time. We're spending on it right now. There is so much bigger things and I guess I'm able to move past it.

Scott Benner 53:37
I feel the same. I actually feel like I'm sure everyone does. But if I could just live a couple 100 years, I think I'd be really great. By the time I was like 170 like I really just

Jeff Flaxman 53:46
get figured out there. I

Scott Benner 53:48
really think I'm getting this figured out. Yeah, I just feel like I started in a whole you know, it took a while. Just a

Jeff Flaxman 53:55
few feet behind everyone else. Yeah. Well,

Scott Benner 53:58
that's pretty generous, but I yeah, okay. So when do you guys get married?

Jeff Flaxman 54:04
Oh, we get married in 2011. So that's she graduated college and Oh, wait, I graduated in oh nine because I took a victory lap there. I did. So well. The first four I needed one more year.

Scott Benner 54:19
I didn't leave enough of my money here with your people. Let me

Jeff Flaxman 54:23
Yeah, exactly. Hang on. We got married in 2011. And that's when I was actually able to start looking at diabetes and saying, you know this, it's not going anywhere. I've got the job thing figured out. I've got I'm engaged. I'm going to be married. I guess I should probably figure out this diabetes thing though.

Scott Benner 54:40
Okay. And so in

Jeff Flaxman 54:42
college I and this is going to be awful to anyone in college to hear but I probably tested my blood sugar maybe 6070 times throughout those five years, maybe because test strips were expensive and I knew I needed the insulin I could You'd probably make it without the test strips.

Scott Benner 55:03
Okay, so you just sort of eyeballed it. Like, based on the past, you're like, Oh, I should give myself about this much insulin here and my blood. Yes, probably it

Jeff Flaxman 55:11
was still on the 7030 mix for most of that time there. So

Unknown Speaker 55:16
I'm like, Well, I

Jeff Flaxman 55:17
think we go here it goes, they're on. There were a few more of the dangerous lows and highs a few times there, throughout all that, because that that 7030 mix at a time, it would be like stack on yourself so much of the long acting, and then it would all just dump at one time.

Scott Benner 55:32
How much of your diabetes was your girlfriend in college, like aware of?

Unknown Speaker 55:37
Ah, God,

Jeff Flaxman 55:38
even to this day? I haven't done a good job of teaching her What's going on? Like I was talking to her last night about this. She knew I had the this coming up. Yeah. Like you realize, I really don't know what you do with diabetes that much at all.

Scott Benner 55:52
It's interesting. Now I don't get so

Jeff Flaxman 55:53
programmed to self care.

Scott Benner 55:57
Yeah, I don't find it to be uncommon for many people that I talk to honestly, it's, it is it is either just one or the other. I've nobody's No one's ever said anything in the middle. They're always just like, Ah, it's on me. She doesn't really know he doesn't really know. Or it's or it's, oh, no, we're in this together. And it seems to be more wrapped around the timing of when the person was diagnosed. So what probably what care must have been like for them, then versus now when you can share it with somebody and, and think I'm just so used to dealing with it myself. I

Jeff Flaxman 56:28
just continue to like, I'll tell her how the doctor's appointments go. And when, hey, there's a low coming on here. The sensors telling me so I'm a you're in charge of the kids for the next 20 minutes while I battle? This monster here,

Scott Benner 56:40
huh? Yeah. And I mean, where would you even begin for to understand it, you know,

Jeff Flaxman 56:45
I have no idea. But I know how to do a better job. And that's kind of my goal.

Scott Benner 56:49
Okay. So so when you when you move into what we would call more like modern care? How long did it take you to figure it out?

Unknown Speaker 57:00
Well, I

Jeff Flaxman 57:00
started a pump in 2011, in probably eight years, seven, eight years. So 2018 about is when I really started buckling down and figuring things out here. So were you just sort of using the pump as a way to not have to inject.

Unknown Speaker 57:15
That's basically

Jeff Flaxman 57:16
what it was from about 2011 all the way until 2017 2018. It was I I had the education but at that time, I'm a hot shot like 25 year old I don't need to pay attention to what you're telling me. I've had this disease since I'm 12. What do you know? Yeah, Mr. Doctor guy.

Scott Benner 57:32
Yeah, that's um, another common

Jeff Flaxman 57:38
man, which was tremendous myself. I was stupid. Do that. No. But listen to the professionals. Yeah, I'm

Scott Benner 57:43
not saying no, I'm just saying it's a it's a pretty common feeling after you've been living with it for a while to just feel like, I don't want your help.

Jeff Flaxman 57:52
Yeah, but I was on the Medtronic pump system, and I still am today, which kind of makes me feel like a pariah being talked to by you and you Dexcom people there.

Scott Benner 58:02
You know, Jeff, it's funny. I hear people say sometimes, like, I'll see you online. Like I saw somebody that they say, Oh, you should try his podcast, especially if you have an omni pod and Dexcom. And I'm like, Is it really any different if you have a tandem and a Libra like it? It's not I don't have an allegiance to it. I know, people probably laugh to hear that. It's what my daughter uses. I know it to be really what you know, it's just what I know. And yeah,

Jeff Flaxman 58:25
and I, I don't really take any offense to it, your stuff is helpful. I mean, hearing a lot of that stuff that resonated with me, and I was able to implement a lot of the steps there myself.

Scott Benner 58:35
Thank you, Jeff. And I do have like, you know, I have in the past and I remain I I don't, I don't appreciate what I feel like I saw Medtronic doing around trying to close insurance coverage around just their pumps. And I thought that was pretty shaky, and I didn't like it. So I set it out loud. One time. You know what I mean? I

Unknown Speaker 58:58
I get it. Yeah.

Jeff Flaxman 59:01
I'm on that for so 2011. Yeah, sometime I eventually, like adapted and like 2013 2014 around there. I got there first. CGM, which I think was the enlight sensor is the one Medtronic had then but I didn't wear it. I didn't like it.

Scott Benner 59:21
Was the was the sensor wire? Like? I've heard people describe it as a harpoon was it is was it really bad?

Jeff Flaxman 59:28
I don't think so. No, I mean, I, I'm kind of weird. If my pain tolerance there were I wouldn't even use the inserter I would just kind of find the spot and just stab myself with it and

Scott Benner 59:37
just push it through with a hammer if you have to.

Jeff Flaxman 59:40
Yeah, like sometimes it hurt a little bit. But I was able to do it just got through. But what made it really difficult is I coached wrestling and my teaching job where I was at, okay, and I'm not sure if you're familiar with the sport at all, but wrestling with this thing hanging off your body there didn't play well together at all. So I tried By the sensor and then it would just get ripped out halfway through a practice.

Scott Benner 1:00:04
Yeah, I don't see how grappling. Does that make a big scene about it like,

Unknown Speaker 1:00:07
Oh my gosh, I'm dying.

Scott Benner 1:00:10
Yeah, I don't see how grappling and then that sensor would be would work together that well,

Jeff Flaxman 1:00:16
it didn't it didn't go well at all. But I would wear it maybe one week every two months because at that time the sensor only last. I think three or four days is all that one would last before you'd have to change it again.

Scott Benner 1:00:28
Hey, why do wrestlers ears get big and weird?

Jeff Flaxman 1:00:32
Ah, that's it's called cauliflower ear. So when they wrestle too much they don't wear protective covering over their ears in practice. And really the simplest term is the cartilage in the ear breaks and then re calcifies harder.

Unknown Speaker 1:00:45
Gotcha. So that's

Jeff Flaxman 1:00:46
what's happening the whole time. So it breaks re calcifies. And it breaks again, Re calcifies until it turns into this closed thing that is gross looking.

Scott Benner 1:00:55
Then my second wrestling question is how do I get ringworm from the mat? Why is that a thing? These are the all I know myself.

Jeff Flaxman 1:01:04
Because those mats are stored in usually a hot place. Like when they're rolled up. It's a environment with a little bit of sweat that's on it and the close quarters, it's able to live inside that, uh, I don't even know what the material is called, but it's able to live there.

Scott Benner 1:01:20
And then you get your face rubbed into it a couple of times. Yeah.

Jeff Flaxman 1:01:23
back of your head face. I mean, there's any number of things that could be gotcha. Oh,

Scott Benner 1:01:27
by the way, that's all I know about wrestling. That was the entirety of it right there.

Jeff Flaxman 1:01:32
Well, you know, you're not alone in that. That's those are all pretty common things. Yes. I asked

Scott Benner 1:01:36
the The only thing I could say from here is Jimmy Superfly, snuka. And then I'm kind of I'm kind of done with wrestling. And then you're out what I know. I do remember us all getting together to watch those like big wrestling pay per view events when I was we were kids. But I do also remember thinking I don't want to be doing this.

Jeff Flaxman 1:01:59
I don't know sports talk with me. It was good. I was I was good at it. And I just I enjoy that it teaches that independence. Maybe it matches myself there like you're the only one out there against another person. And as close as you can get to a fistfight. I can tell you, it's gonna come out some

Scott Benner 1:02:14
of the toughest people I know wrestle. So it's not it's it's brutal. It's killer. Yeah, it's not it's not surprising to me that you did it, actually.

Jeff Flaxman 1:02:23
But I coached that for a while. But then my second child was born and I couldn't manage the schedule to coach and do that. So in 2018 that was when I'm like, I'm not doing this anymore. I don't have an excuse to not wear the sensor. It's time I do this. Right.

Scott Benner 1:02:39
And one of the things I'm sorry to say I'm sorry, how old

Jeff Flaxman 1:02:44
I'm 32 years old by then like, you know, I've had this for 20 years. Let's Let's kick this in the tail. Gotcha.

Scott Benner 1:02:49
And what happened after you made the decision to pay more attention and and do this in a more so I started

Jeff Flaxman 1:02:56
like that seeing that sensor data was so eye opening at that time was like, holy cow. This is what's been going on between my testing times like I ate breakfast the normal breakfast there, and I'm feeling fine. I tested for lunch numbers are good, but I didn't realize that. Like I just had some beeps going off here on mine that my breakfast shot up a little faster than avoided because of the coffee and come down. I didn't know the roller coaster I was on.

Scott Benner 1:03:22
Yeah. What's the first step when you realize what's happening?

Unknown Speaker 1:03:27
Ah,

Jeff Flaxman 1:03:28
and first it's that frustration like what the heck did I do wrong? Like what where did I mess up? I followed this and then it I mean, you know it you hear it all the time it comes down to change the basil rates there, push them up here, slow them down there, carve a little extra there. And I think my whole life I grew up with that fear of insulin scary. That I mean, that stuff can kill you. So I was always hesitant to give myself too much.

Scott Benner 1:03:54
Yeah, why we said it earlier. Right. Don't get low. Don't pass out don't get dizzy. Yeah,

Jeff Flaxman 1:03:57
I mean, that was my fear. Like low is terrifying. High is gonna kill me in the long run. But lows, those are terrifying. I don't want those.

Scott Benner 1:04:04
What's that sentence mean to you? Like, it's gonna kill me in the long run? Did you ever think it meant you know, when you were 40? Or did you just think it meant is just something you didn't? I don't

Jeff Flaxman 1:04:14
think I never placed a timestamp on it. I want it to be but I knew by probably Gosh, by my late 20s, early 30s I knew the higher my blood sugar was the longer the more long term damage. I was opening myself up.

Scott Benner 1:04:28
Yeah, I just think that cognitively people don't Delve too deeply into what that means when they make the trade from that when they feel like they're trading now for later. Yeah, you know, it's some people's later will be you know, I don't know I'll die when I'm 72 instead of when I'm 75 but not not, you know, people don't think of it as you know. I'm gonna need laser surgery in my eyes when I'm 30 like, yeah, that's not that's not how your brain wraps around it. I guess. It's self present still, like my eyes.

Jeff Flaxman 1:04:58
I'm still further The heck I put myself through there in high school and college, barely testing. Who knows what those numbers were. I mean, I didn't have an A one c check from the time I was 16 until I was like 22. It just didn't happen because it wasn't in the cards. I didn't have insurance. I couldn't really go to a doctor, I was able to my family doctor would renew prescriptions without seeing me because I knew I couldn't afford.

Scott Benner 1:05:21
Yeah, they were trying to help you quote unquote,

Jeff Flaxman 1:05:24
yes, yeah. And it was it kept me alive. Sure.

Scott Benner 1:05:27
No, hey, listen. I mean, I, I always think of that. That movie where the climber gets his arm pinned under the Boulder, and after a couple of days, cuts it off with a pen knife. And I think of like, the enemy. Like, yeah, you just make the best decision in that moment. You can to just live for one more second, you know, like, you're just like, and that's how I think of sometimes how I think of a lot of your stories of diabetes. And back in the day of people just like trying to get through today, this hour this day. Yeah, I'm gonna

Jeff Flaxman 1:05:57
I'm gonna tackle today and tomorrow. I'll worry about tomorrow.

Scott Benner 1:05:59
Yeah, yeah, it's a it's a, a real luxury of the technology that we can all sit around now and look at this data and think about, you know, look at it at a more micro level and then start to consider macro out over the years based on you know, I can I can keep this a one c like this forever. If I want to now, like I know how to do Yeah, yeah, it's a it's a luxury for certain.

Jeff Flaxman 1:06:23
I mean, by 2018, two kids, I'm managing things a lot better. The lows are really ever happening, the highs, before I could see a 240 and say, 220, I'll deal with it. But now, once it gets above 150 on the sensor, I'm like, What are you doing? Stop it. And then I started attacking and correcting. That's excellent.

Scott Benner 1:06:43
I'm happy for you. What are your What are your agencies like now? I'm

Jeff Flaxman 1:06:48
low 70s for a while. And then probably a year ago, now I jumped to the 670 G, and I've been on their auto or auto mode. They're the semi closed loop system since then, that bring you down more? We'd like to say that.

Scott Benner 1:07:04
Can we say that with any Honestly?

Jeff Flaxman 1:07:07
I can't it has at this point. There is that frustration? I'm sure you're well aware of it, the whole FDA or whoever it is that doesn't let them set a lower target in there. Like when I go through it, and I noticed my blood sugar's at 140, which isn't bad. But I see the arrows up, I know what's coming. And I try to get myself a Bolus in that mode to autocorrect. And it's like, No, no, you're not above 150 you can't pull us right now. We'll take care of it in the algorithm there.

Scott Benner 1:07:36
Do you have to get out of the loop somehow to do that, then,

Jeff Flaxman 1:07:39
I mean, I could exit the loop and then go back into it to fix it there. I mean, that's the correct way to do it. But most of the time, I will go to Bolus which I know is a no no. And I should slap myself on the wrist for that. Well yeah, like I'm gonna take care of it myself because you're not doing it fast enough.

Scott Benner 1:07:57
Right. I think you're just adapting the I mean, you said it to the FDA set limits on on where they could have targets and you know, I think the one you're using is basically the first one out the door so there's

Jeff Flaxman 1:08:08
Yeah, it's only gonna get better for all their companies from here and I'll for sure

Scott Benner 1:08:13
yeah, good for you know, I think do what you need to do. I would I have thought you're gonna say you injected a little insight i didn't know i i don't know why just pretending carbs went in didn't occur to me. I just think after talking to you for an hour I was like he probably just stick some insulin in his leg real quick with the knee.

Jeff Flaxman 1:08:30
Oh, I I have a box of needles here but I haven't touched a needle system in a long time. Yeah,

Scott Benner 1:08:37
we have the same needles from ardens diagnosis still like we use probably three a year maybe you don't I mean

Jeff Flaxman 1:08:44
that's just so foreign to me. Yes. He was diagnosed so young and

Scott Benner 1:08:49
pump that whole time I mean good for her. Yeah, it's very cool. It really is. It just it makes me happy to think that she and just all the other people who are coming online you know today in the in the recent past have access and at least the hope you know, I know everybody can't afford it and some people don't have insurance obviously that that's helpful and that is sickening. But just that that exists and that people are talking about it differently. I just interviewed an 18 year old girl yesterday who was struggling and she said she came in one day and her endo just said look i don't i I'm not getting through to you. I think you should listen to this podcast. And and hurry one season the is is is incredible. Now it went down like two points. But the point is is that like that the doctor didn't just for the rest of her life. Just let her agency sit in the eights and go I don't know like you and I don't jive together so I guess this is your life. The doctor for that

Jeff Flaxman 1:09:47
doctor that was good for her to have that doctor.

Scott Benner 1:09:49
I thought so too. Yeah, we're just really interesting. The way it goes. All right, Jeff, listen. Did we miss anything? Did your Did you have five cats run away? You know, I

Unknown Speaker 1:10:01
mean?

Jeff Flaxman 1:10:03
I think that's the ups and downs. There's probably some more in there. But then the diabetes, we don't need to go deep into the rabbit hole here. Yeah, no,

Scott Benner 1:10:11
no, I didn't. It's tough. At one point about halfway through I, I heard your voice break. And I was like, Oh, I

Jeff Flaxman 1:10:16
was breaking up a little bit there. But I,

Scott Benner 1:10:19
I got through it too for you. It's is it cathartic to talk about? Or just is it not something you think about much anymore?

Jeff Flaxman 1:10:27
I don't think about it. And I usually call it my fatal flaw there. But I like to keep emotions buried down deep where they belong. Gotcha. Jeff,

Unknown Speaker 1:10:35
Catholic Jeff, by any chance?

Jeff Flaxman 1:10:37
No, my wife is. So I've got a little scene next to my okay.

Unknown Speaker 1:10:41
She could teach you how to

Jeff Flaxman 1:10:44
teach me and I go through the motions and nod my head I understand.

Scott Benner 1:10:49
That's really accent and you said, you mentioned your two younger kids. The no signs of diabetes. Where do you stand on looking? Do you do trialnet? Or do you just wait and see? Ah, no, I'm

Jeff Flaxman 1:11:01
waiting for the symptoms. Yeah, I like the covers there. I haven't bothered look through the whole DNA genome there to see if it's in there. Because if it is, it's going to hit them anyways. And if it's not, I think I'm Cognizant enough to be aware of when it's happening.

Scott Benner 1:11:15
I think that is a valid stance on this. I think they're, I think everyone's stance on that is valid, but I don't have a way to argue with either the people who are like, I'm just gonna let life unfold and I'll take care of it as I can. Yeah, and if my

Jeff Flaxman 1:11:28
daughter and son they never have to deal with that they can eat all the Reese's Peanut Butter Cups they want good for them.

Scott Benner 1:11:33
Would that be your go to if you didn't have diabetes all the time? Would it be the Almond Joy?

Jeff Flaxman 1:11:37
That coconut is amazing.

Scott Benner 1:11:40
Almond Joy has nuts mounds don't Is that right? I think that's the message you're not old enough to remember those. Those commercials.

Jeff Flaxman 1:11:48
I've got a vague memory of those commercials, but not much.

Scott Benner 1:11:51
I think all the Charlie Brown specials used to be the advertiser was I think mounds and Almond Joy. And you have no idea like like What a crazy like, you know, even you were too young for that. But the idea that like once a year, you know, the Great Pumpkin Charlie Brown would come on like the day before that before Halloween. And

Jeff Flaxman 1:12:12
I remember little that as a kid, but it was more for a nostalgia. It wasn't like a huge viewing event that

Scott Benner 1:12:17
oh my god, no matter where you were, like the entire world just ran home to watch Charlie Brown. It was you know, you it was gonna happen and then it was going to be going again. And you couldn't you couldn't find it or rewatch I remember when it came out on DVD, or VHS. Maybe VHS, VHS. And the idea that I could just watch the Great Pumpkin Charlie Brown at my leisure was mind numbing,

Jeff Flaxman 1:12:41
though Yeah, that's, I see it with kids now to like in this world of Netflix and Hulu and Disney plus, like, my children don't know what a commercial is on TV. Yeah. If they can't go from one Mickey Mouse Club house directly into the second one, they think something's wrong in the world, something's happened. Well, you

Scott Benner 1:12:57
know what the funny thing is that once I had access to it on VHS, I never watched it. And it stopped becoming appointment television at Halloween, because the feeling was there that I could just watch it whenever I want. And so actually having more access to it stopped me from ever watching it again.

Jeff Flaxman 1:13:16
Well, isn't that a strange phenomenon? It really is.

Scott Benner 1:13:18
I think I think that happens to I think the access that you ever do that you ever decide you're going to watch something and spend a half an hour scrolling and then never watch anything. Oh, yeah, that

Jeff Flaxman 1:13:31
happens quite a bit. Like, Ah, man, I need to watch something here. Let's see what's on and then you just, you go into that. It's like getting on a deep Google on something where you're 12 Wikipedia pages in and then you find nothing. By the end of it. You're like, Well, okay, it's

Scott Benner 1:13:43
bedtime. Now I tried. So my point is, which is better?

Unknown Speaker 1:13:46
Now, I have no idea

Jeff Flaxman 1:13:48
why we're not gonna fix that. We're better so because you watched it. It was on you knew it was there. And that was it. I'll

Scott Benner 1:13:53
tell you what, those commercials work. I've never had a mouse or an almond joy in my life. But I could sing that damn song If I had to. So

Jeff Flaxman 1:13:59
yeah, those those advertisers know what they're doing.

Scott Benner 1:14:02
They certainly do. Jeff, I can't thank you enough for opening this wound and sharing it with everybody your

Jeff Flaxman 1:14:09
email, able to help some other parents out there or even people that have it that I mean, life can throw a lot at you. But it's I don't know, I say that it's not an excuse to give up.

Scott Benner 1:14:21
Is that like, I never do this on this podcast ever. But if I said to you, like, leave people with a message is what is the message? Like, how did you get through all this?

Jeff Flaxman 1:14:34
I, I just saw it as there was no other choice. I mean, I had to get through it. Yeah.

Scott Benner 1:14:41
All right. So nothing we can pass on to people. I think, by the way, too. It's a fallacy. The idea that Jeff knows something that if you just knew your life or your kid's life would go better. I think that your reaction to all these things that happen is, is classically who you are and you know it worked out for you because That's your personality. And maybe that's a little dumb luck even, you know,

Jeff Flaxman 1:15:03
I think there's a heavy amount of dumb luck in my life, I've kind of always tend to fall forward on things. I mean, sometimes yes, sometimes No, but I've always found the best in that situation.

Scott Benner 1:15:13
Yeah, I might have to name this episode falling forward. Because there's, I don't know what else I would call it to be perfectly honest. I really appreciate you doing this. I genuinely do.

Unknown Speaker 1:15:25
Oh, no, I enjoyed

Jeff Flaxman 1:15:26
it. I mean, it's a little rough at times there. But I again, I hope that I'm able to help. Even in teaching, I see it as like, I noticed a kid with diabetes come into class, I instantly try to connect with them and say, Hey, what's your numbers out there?

Scott Benner 1:15:39
Yeah, he used your full name when you introduced yourself, if not that, I don't know how they would. But if one of your students ended up hearing this, you're fine with that. Right?

Jeff Flaxman 1:15:50
Yeah, that's fine. If they hear it, they hear it. Yeah. How much? I don't think there's anything incriminating. I

Scott Benner 1:15:56
mean, we'll find out how I didn't mean that. I meant it's personal. But I meant, like, how much of yourself? Do you share with your students? Is that not how that works?

Jeff Flaxman 1:16:04
Um, well, when I was an English teacher, I taught some novels we would read in there and there was death or something like family tragedy, I would connect with him there on that moment to get it across and open up to them a little bit.

Scott Benner 1:16:15
I say, I say that's a, it's a listen, I have to ask you before we go, I think, where do you stand on? I mean, we're recording this in August 2020. Yeah. Where do you stand on going back and being in a classroom for kids? As far as team like, what's your thought?

Jeff Flaxman 1:16:36
Well, I in my school, I teach it, I'm on the committee's to figure out how to do that. And we've all come to the agreement that it's a lose lose situation, whatever choice a school makes, someone's going to end up losing their correct choice right now.

Scott Benner 1:16:52
Can we please everyone? Can kids be taught effectively over video?

Jeff Flaxman 1:16:58
Yeah, older kids, definitely, I have my concerns on how an elementary first, second, third grade will do it. And it's not so much the kids can't learn. My concern is I don't know how many teachers have the skill set to make a successful video to interact with him that way and have that technology knowledge behind them to manage all of it is

Scott Benner 1:17:20
is are you finding that some teachers just don't have the desire to be, like, put on video like this is they find it embarrassing? Oh,

Jeff Flaxman 1:17:28
definitely some that like, I'm not recording myself, they're not comfortable doing that. I mean, I teach. Now I teach like a stem in technology class, and I have no issues making videos and YouTubes. And I do some video editing in the background and making things so I don't have a problem with it. But I know there are some that either don't have the skill set, or just not comfortable putting their face on YouTube for a lesson. Because at some point, those kids are going to edit that video down and make them look ridiculous. And I hope it's hilarious what they do to me, I can't wait to see it.

Scott Benner 1:17:58
That's the right attitude. I'll tell you, I was talking to somebody the other day about the internet. And I said, The funny thing about the internet is if you don't pay attention to it, it doesn't exist. It's just yeah, it's not really there a way to look at it. It just it you don't know there could be, you know, right now, countless people in the world who just hate my guts. And if they never tell me and I don't go looking for it doesn't matter to me. And yeah,

Jeff Flaxman 1:18:24
that you don't see it or hear it. It's not real.

Scott Benner 1:18:26
But I don't know what other way to say if it's not impacting me, it doesn't exist. And so, you know, I don't that concern about what other people think you mentioned in the beginning, like, I don't care what people think. I have that very same feeling. I'm very structured in the idea that if I say something here that's valuable to some people, and some people hate me. I'm just happy that it's valuable to somebody. And yeah,

Jeff Flaxman 1:18:51
because if they don't like it or hate it, then they're not gonna use it anyways. So Fine, let's move on just sort of meaningless. I

Scott Benner 1:18:57
can't help everybody. Anyway, I now I want to see the videos that the kids making you too. So

Jeff Flaxman 1:19:04
if you search my name on YouTube, my channels there you can see some of the ridiculous stuff I put out last spring form. It's there. No kidding.

Scott Benner 1:19:11
All right. Well, good luck with all this man. I really, I hope it works out. You know, as best as it possibly can. And that, you know, everything gets back to normal, hopefully, you know, as soon as possible. Gosh,

Jeff Flaxman 1:19:22
I hope at some point we're able to function in a society that resembled something of 2019 Yeah,

Scott Benner 1:19:27
I mean, I just don't. I mean, I think obviously a vaccine is going to be the thing that makes people more comfortable because I saw those pictures from Georgia The other day, they went back to school.

Jeff Flaxman 1:19:36
Yeah, that Oh, that terrifies me.

Scott Benner 1:19:38
I mean, high school we've elected we're starting remote. There will be no in person instruction. At this time. My daughter chose to stay home even though she could have chose to go on it. there's part of me that thinks that they're all gonna go back. One kid's gonna get sick. Teachers gonna get sick. custodians, give me a sec. They're gonna panic and send everybody home anyway.

Jeff Flaxman 1:19:55
And yeah, that's exactly what would have happened and that's why our district just said it's not worth it. I mean, While you're planning, you'd have been sending your daughter into a minimum security prison.

Scott Benner 1:20:05
My son's college basically came out and said that once we saw all the precautions we had to put into place, it would have been financially a burden for us. And just ridiculous. They were talking about tenting urinals in public restrooms, like putting 10

Jeff Flaxman 1:20:19
Yeah, I mean, there was that we had rotating bathroom schedules and when you were allowed to go and when you weren't, yeah, it just the diabetic kids would have to pee every 20 minutes would have been up poops Creek, they wouldn't have chance.

Unknown Speaker 1:20:30
Little Jeff, what would he have done?

Unknown Speaker 1:20:32
I don't know. It'd been rough. Oh,

Scott Benner 1:20:35
my God, Jeff, this was really terrific. Thank you. I'm gonna let you go. But I really appreciate it.

Unknown Speaker 1:20:39
No problem. You

Scott Benner 1:20:39
have a good rest of your day take care of you as well. A huge thank you to one of today's sponsors. Gvoke glucagon. Find out more about chivo Kibo pen at G Vogue glucagon.com forward slash juicebox you spell that GVOKEGLUcagon.com/juicebox. I'd also like to thank the Contour Next One blood glucose meter and remind you to go to ContourNextone.com/juicebox. And of course touched by type one is at touchedbytype1.org on Facebook, and Instagram. February 2021 is shaping up to be the most successful month of this podcast and I can't thank you enough for sharing the show with others, whether that be a link, or by word of mouth. The show is growing because you are sharing it. Don't forget to subscribe and your podcast app if you haven't. And please accept my heartfelt thanks for being a listener. And we'll be back soon with another episode that you're going to love.

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Donate

#443 Type 1 Clinical Trials

Type 1 diabetes clinical trials

Kim is here to share her daughter's story and a ton of information about type 1 diabetes clinical trials.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or their favorite podcast app.

To find any clinical trial: clinicaltrials.gov or jdrf.org/impact/research/clinical-trials/

• Teplizumab for newly diagnosed: theprotectstudy.com/home/

• The functional cure trial company: viacyte.com

• To get screened for auto antibodies: For relatives of a T1D 2-45 (free) trialnet.org and for anyone ($55) jdrf.org/t1d-resources/t1detect/

+ Click for EPISODE TRANSCRIPT

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

COMING SOON

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Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

#441 Doing the Sarah Dance

A family with multiple type 1s and celiac

Sarah's family has a number of autoimmune challenges including type 1 diabetes and celiac.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

---

DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Friends, welcome. This is Episode 441 of the Juicebox Podcast. And today we're going to hear a tale, but not a tale of a tiny ship. It's a woman who married a man who got diabetes and they had a kid, and that kid got diabetes, and they got another kid and that kid might get diabetes, and most of them have celiac. In the 1950s. who done it? At this point, the music would go Dun, dun, dun. But all I have is this.

Today, as you listen to Sarah describe her life with Type One Diabetes. Well, her life yeah, I mean, she doesn't have it, but everybody else does. So alright. Today is you're here Sarah described life with Type One Diabetes from her perspective. 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 health care plan, or becoming bold with insulin. Do you have a great diabetes doctor endocrinologist, nurse practitioner CDE, someone you see that you love that you wish other people knew about? Or are you looking for someone like that, you should check out juice box docs.com. It's a list that's been compiled by listeners like you have great diabetes practitioners. It's absolutely free. Just go over there and peruse it. See if you see somebody in your area. Or if you have somebody you'd like to add to the list, use that same page to send me the information.

This episode of The Juicebox Podcast is sponsored today by the Dexcom gs six continuous glucose monitor by the Omnipod tubeless insulin pump. And of course, touched by type one, I'll be doing a virtual thing for touched by type one on February 26 2021. And there's still room so you can go to touched by type one org and then go up to their menu. And I think it's upcoming events. It's programs upcoming you'll figure it out. It's the internet, you know how to use it. Anyway, you can come absolutely for free. I'm going to give a little talk, answer a bunch of questions. It's going to be fun touched by type one.org. If you're looking for that Dexcom g six, head over to dexcom.com forward slash juicebox. You'll be able to find out all about art and CGM and how you can get started with it. And if you get your insurance, the United States Veterans Administration, I think you might like the answer you get back about what Dexcom costs. And of course, that on the pod tubeless insulin pump that Arden's been using since she was four years old, that's over 12 years now, you can get a free, no obligation demo today by going to my omnipod.com Ford slash juice box. There are links to the sponsors and all the sponsors of the podcast right there in the show notes of your podcast player, or at Juicebox podcast.com. If you're not listening in a podcast player, you should they're free, and they're terrific. And they're right there on your phone. And if you're listening in one and you haven't subscribed yet, please hit that subscribe button. Okay, you ready for Sarah?

Sarah 3:23
I'm Sarah. I'm the mom of two kids. Maya is 12. She has type one diabetes and has for almost two years now. I have a son named Finn, who's almost eight. And he also is looks to be headed toward type one diabetes, but is not yet. And then my husband Jeff also has type one. And then on top of the type one, all three of them have celiac also.

Scott Benner 3:54
Holy God. Okay, hold on. This is gonna take notes. Give me your daughter's name one more time.

Unknown Speaker 4:03
Maya,

Scott Benner 4:03
Maya, Maya is 12. Probably for two years. Finn is on his way. Everyone has celiac. including you.

Sarah 4:15
Not me. I'm the only one that doesn't. Wow.

Unknown Speaker 4:20
You got screwed, huh. Look at that

Sarah 4:22
time. Yeah, I'm the odd one out in the house.

Scott Benner 4:24
That's a nice way to think about it. I see. I said one thing and you had a much better reaction. I thought. You get the short end of the stick. You're stuck with all these people with celiac and you're just like, No, it's okay. I'm the odd one out. That's, yeah, that's interesting. So I am going to ask you a lot of questions, obviously. Okay. How long have you been married?

Sarah 4:45
We have been married for 17 years.

Scott Benner 4:49
He almost said too long.

Unknown Speaker 4:51
17.

Scott Benner 4:52
That's what he would say. Ah, I bet you he wouldn't say that where you could hear it. Did he have type one when you You met him?

Sarah 5:01
He did not well, bait and switch, bait and switch. So he probably did. Looking back on it. Oh, and we didn't know. So he was diagnosed when he was 27 I think, yeah, 27. But he had had symptoms of diabetes for a long time. And they just didn't get severe enough to really notice it. Understand until right before he was diagnosed, how long do

Scott Benner 5:33
you think is a long time?

Sarah 5:36
More than five years? Wow. Easily more than five years looking back? Was

Scott Benner 5:41
he ignoring something? Or was it just not harsh enough to force him there

Sarah 5:45
was, there was probably a little bit of that. And we didn't really know it at the time. But pretty much all of the men on his side of the family have been diagnosed as type twos, late in life, but they're all tall and skinny. And now looking at it, we think they're probably all actually type one. And it's just like a really slow onset.

Scott Benner 6:13
Any people left over that can check on that are these from past generations that are gone. So

Sarah 6:17
he's got I think he has one uncle that's still alive. That I think did eventually get diagnosed with type one. But yeah, like his grandfather was told he was type two, and there's no way he was type two. So we think it's just whatever type of type one runs in the family is like this really slow progressing. Then Maya was kind of the anomaly getting diagnosed as a child. Okay.

Scott Benner 6:51
Also being a female, right? Because the rest of our men,

Sarah 6:54
yeah, yeah. So she was the first female in the family. So then that kind of makes me wonder, I'm like, Well, I must have some genetics on my side, too, that might be contributing to that. So

Scott Benner 7:06
helping will say, Oh, yeah, that's all. Okay. All right, Jeff, diagnosed 27. Now, celiac, describe for me, how does it impact everyone the same way in the family? Or does everyone have a different experience with it?

Sarah 7:26
I would say the symptoms are similar, the severity in how they react is a little bit different. Like Jeff went through a long period of time where he traveled a lot for work. So he would always get we say, glutened, on his trips. And, you know, a lot of times it was just mild stomach issues, some joint pain. But like Maya, when she was younger, you know, she would react so strongly she would vomit. It was really, really awful.

Scott Benner 8:00
What kind of foods do that just for people to wrap their brain around? Like, throw a couple examples at me? Well,

Sarah 8:07
I mean, so really, it's like with celiac, you have to be on a really strict gluten free diet. eating out is usually where the gluten contamination tends to happen. So it's like even if we went to, like, Can I talk about a specific chain? That's really good. Hey, celiac.

Scott Benner 8:26
What do you think and I should have missed the sponsor, and you don't want to give it away for free. What was your thought there.

Sarah 8:32
So like, in and out burger is awesome. And they have a, they have like a dedicated griddle where they cook patties, and they don't cook any of the hamburger buns on that griddle. So it's like, even just that little bit of cross contamination is enough to make them sick.

Scott Benner 8:48
So when in and out says gluten free, they mean it and they come through. Yes. Whereas other people might say, hey, look, the ingredients are gluten free, but I did use the same griddle to warm your bond that I warm somebody else's bond on?

Sarah 9:00
Well, and now there's this really annoying trend at restaurants that's called gluten friendly, or gluten sensitive. And pretty much we see that and that means like, run the other way. find somewhere else to go.

Scott Benner 9:13
Really what gluten friendly or gluten sensitive. What could that possibly mean? Like we're

Sarah 9:18
kind of careful. It means I think we're gonna say like, we Yeah, we do our best. We don't intentionally add anything that contains gluten, but we're gonna cook your food in the same pan as everything else and all of that. So really, for somebody with celiac, that's pretty useless.

Scott Benner 9:37
Gotcha. Here we offer the gluten dice roll.

Unknown Speaker 9:41
Exactly. If you get lucky

Scott Benner 9:42
and the chef takes a big white towel out and really buff the pan out real good before he does your thing. You might be okay.

Sarah 9:48
Yeah, it is. It's like Russian roulette.

Scott Benner 9:50
That's hard to put on a song. Yeah, we

Sarah 9:52
Yeah, we don't we don't do that.

Scott Benner 9:55
Gluten friendly,

Sarah 9:57
gluten friendly, which is not friendly. When you have celiac? No kidding.

Scott Benner 10:01
I feel like I might be gluten friendly. Like, I don't mind it. And if it was a person, I'd probably say hi. That's that's pretty much what I'm getting out of that. Okay, so if he travels, that becomes more of an issue. If you really need to lock it down. What do you do in that situation? You bring things with you, what do you have to build time into shop when you arrive somewhere? And how do you prepare a hotel room,

Sarah 10:26
he will bring some stuff with him. But most of the travel was International. So it's kind of hard to bring a lot with you when you're traveling to Guatemala or Mexico or anything to declare Sinaloa going all over the place. So yeah, it was like he just bring a bunch of like, protein bars, and stuff like that. And when he had to live off of those he would. But really, the US tends to be where he would have the hardest time traveling and staying gluten free. You know, you go to a lot of other countries and like the food is what it says it is.

Scott Benner 11:06
It's obvious you can I was just talking to ya, my daughter's friend last night who made the assertion that subway made an amazing sandwich. And I said, I feel like you're wrong about that. Because I've heard that all of their meats are based on the same meat, which you know, and then she's like, well, I'm vegetarian. I don't eat the meat. And I was like, Yeah, but the rest of it even like, I mean, I don't notice a mixer back there. I mean, they always bake the bread in front of you, but I've never seen them make it maybe I'm wrong. Like, I have no idea. I'm just like, but anyway, that conversation led to an idea of you should be able to look at your finished food, and deconstruct it and end up with ingredients you can describe that are natural, like, that's good. You know what I mean? Like, that should be your goal. I said, I was like, you know, if you get a pizza made, you know what a chain, you know, it's possible that those crusts are pre made and frozen, which then puts preservatives in them and coloring and everything I say if you make a pizza at home, you can be pretty sure it's flour and water and salt and olive oil and tomatoes and cheese. You know, you can control those things. And she stared right through me and said, there's a man at my subway that makes such a good sandwich. I was like, okay, she's not listening to me. But anyway, that was the, the idea. Like you should be able to deconstruct. So you're saying in other countries, they're using more staple ingredients that are identifiable?

Sarah 12:33
Yeah. I mean, you go to Guatemala, and you order a steak and you know, it won't be doused in, you know, some kind of steak sauce or anything like that. It's literally just a grilled steak. Okay, well, billions or whatever. Right?

Scott Benner 12:48
Right. Okay. And now if he gets something by mistake, is there any stopping the train that's coming? Or do you just have to make your way through it? You just have to live through what happens next?

Sarah 12:59
Yeah, it pretty much you just have to kind of wait it out. You know, he used to take under these little like, what are they called? I think they're called gluten aid. They're a little enzyme pills that are supposed to help digest gluten. Like if if you accidentally get gluten. And he seems to think that those kind of shorten the duration you know, if he accidentally accidentally does get gluten but you pretty much just have to write it out since it's, you know, an autoimmune response. And there's not much you can do to really stop it. When you say write it out. You mean in a room that mostly has a tile floor? Not not that bad. Although it could be depending on the dose, like if you fall on ate like a piece of bread, it would probably be pretty ugly. But you know, with with just minor cross contamination, it's like, yeah, you might feel uncomfortable for a week or so. And, like for him that results in joint pain, like feels like arthritis.

Scott Benner 14:00
Jeez. And Sarah, between you and I as people who can eat gluten. How great is bread? Oh my God, oh, bread, wouldn't you?

Sarah 14:10
So I don't because I don't eat it often. Now when I do eat it. Like I don't feel right. So I'm like I think my body got so used to not eating it. But now I eat it. I'm like, Oh my gosh, what is this?

Scott Benner 14:23
Sir? Did you make your own friendly? Did I What did you make your body gluten unfriendly?

Sarah 14:29
I think I might have. Yeah, accidentally. I always joke that the only thing that I have in the house that contains gluten is beer. Because I feel like like they're in bottles. They won't touch anything like that's the one item that I haven't given up but yeah, pretty much everything else in the house is gluten free because with two kids like I don't want to worry about them going into the cupboard and grabbing something by accident.

Scott Benner 14:56
So you are de facto gluten free because three people Your family are as well. Yeah,

Sarah 15:00
for the most part. Gotcha. Yes, that may not not strict. But

Scott Benner 15:05
I hear what you're saying is has that made a health difference for you? Or if you can tolerate gluten, not having gluten really doesn't do anything?

Sarah 15:13
I yeah. I don't know that it really has made a difference for me. Yeah, I think because I don't have celiac, it doesn't really. I don't notice any difference.

Scott Benner 15:25
I asked. Because when I was figuring out that, I'm not sure if I've spoken about this or not. I've lost the timeline of when I said things at this point. But my body does not retain ferritin. It's a genetic thing that we're just starting to figure out. Right. But yeah, as the, you know, as I was digging through the myriad of possibilities that this could be, you know, one of the doctors says, eat gluten free for me for six months. And I was like, okay, so I did it. And nothing about my life got better. And I found that discouraging. I was like, I thought I would at least be taller or handsome, you know, like or just like lose 10 pounds, just because I made the effort because I really did. Like I was eating those. You know, like, if I bought bread, it was this gluten free bread. That was like $9 million dollars for like a hamburger roll. And so I was really strict with it. And then when once it was clear that gluten wasn't my issue. I was like, what a letdown. Like,

Unknown Speaker 16:20
yeah, you know,

Scott Benner 16:21
it didn't do anything for me at all.

Sarah 16:22
Yeah, yeah. And I think, yeah, I think sometimes some of those malabsorption issues that tends to be the go to is cut out gluten. But yeah, it's expensive. It's hard to stick

Scott Benner 16:38
to No kidding. It turned out what I needed was a rusty bag of water injected into my veins. So that there you go, is an oversimplification, right, I get something called injector for, and it genuinely does look like someone took a handful of rust and dissolved it into a bag of liquid and then just pumps it into you. And it is life changing.

Sarah 17:02
Do you feel right away? Do you feel the effects of that energy come back?

Scott Benner 17:07
No. So what has to happen is it has to get in and then your bone marrow has to pull it back in. So then in the process of oxygen sticking to cells correctly, blood cells correctly, that oxygenation happens. And then it happens. So what it feels like is that somebody slowly turns my dimmer up over about two weeks and then one day, okay, bulbs are just really bright. I don't notice that I got there. But it's it really is interesting. And we've now done some testing I haven't found out yet. But my son who is like a college athlete, and it looks like an underwear model get you know, like and he got his well visit done. And I just said to the doctor, I was like Adam Adams been on the show. I was like Adam, like, check his ferritin. And he's like, that's not gonna be a problem. And I was like, come on, just do it. Right. So he does it. And Cole's ferritin is super low like mine.

Sarah 18:02
Oh my gosh, yeah. So now just some genetic thing. Just lucky, I guess.

Scott Benner 18:07
Yeah. And so he's going to try and infusion next week. And if that helps them, actually, I think he's going to refer to a research scientist at Harvard who's working on this stuff, because it's incredibly uncommon to begin with, and even more uncommon for more than one person in a family to be dealing with it.

Unknown Speaker 18:25
So interesting.

Scott Benner 18:27
Yeah, so good. Good for us. Look, look forward to the the low iron podcast in 2025. I don't think that's gonna be a thing. But it really it really is crazy, because what happens next is that everything fundamentally about how I think and feel and how my body operates. gets better. Yeah, it's crazy.

Sarah 18:51
Yeah. That's, that's great that they figured it out. And Nice, nice for your son that he wasn't the first one. And then you're stressing that there's something really wrong. And

Scott Benner 19:00
yeah, that was important to me, Sarah, because I'm adopted. So if somebody went through this before me, I didn't know. And I just thought I'm going to fix By the way, it was nice you to say it was nice that they figured it out. But we figured it out without internet and finding research articles, because it's such an odd thing, that doctors just don't have a pathway in their brain to get to. Is it possible because my CBC My, my, my complete blood count count, I guess that's what that is, right? It looks perfect, with the exception of my ferritin.

Unknown Speaker 19:33
Okay,

Scott Benner 19:34
it almost looks like it's a mistake on the thing. And I'm not saying I'm super healthy, but my labs are all really good. And then this isn't, then you take it to a doctor and you know, then they go down the pathway of well, you probably have cancer, that's where it starts is your bleeding internally and you don't know it, obviously. And they're like, because you're not getting your period and I was like No, I do not get a period. I am just a stay at home dad. And so You know, that all happened. And then I went through that entire process. And then it got to the point where they were just sort of like, well, I guess this is how you are. And I was like, Oh, no, no, no, like, that's not happening to me. Because I get really, I can get kind of shaky when it gets low. Yeah, it's not on purpose. It's a really interesting thing that happens, where if I get involved in a disagreement with something, and it doesn't have to be like people like standing on either side of the room going red, blue, it's not like that. It's just like, if something happens, and it hits me, and I'm not able to prepare for it. When my when my ferritin is low like that, I start having responses out loud, that I don't feel in my heart or think in my head. Right, I come off like a real. And while it's happening, my brains going, why are you saying that? We don't think this, like, why is this happening? And I stopped myself. I'm like, I'm sorry. I don't feel this way. Like, I'll just and I have to, I can't stop myself. And I'll get foggy and dizzy when it gets really bad. And my muscles go to jelly. And I lose my ability to digest food. Well, like everything goes to hell. It's really crazy. So I have a lot of empathy for your kids and your husband and especially for stuff like this. And because it's bread and my god bread, so good.

Sarah 21:20
Yeah, that was that was hard at first, I think actually, we we always joke that we think what put him over the edge for his celiac diagnosis, because that came like think, two or three years before he got diagnosed with diabetes. But he had gotten me a breadmaker for Christmas one year. And so I was making bread, like every other day. And just the two of us were consuming an entire loaf of bread every other day. And then he started getting really sick. So I think it was the bread machine that actually

Scott Benner 21:56
like, like his, his, his celiac friendly belly was holding on by the by just by the skin of its teeth. And you were like I can fix this with nine loaves of bread a month.

Unknown Speaker 22:07
Exactly. Yeah, she's

Unknown Speaker 22:08
I mean, looking.

Sarah 22:08
He knew looking back on it. He had it as a child too. But nobody knew about it back then, like his mom had taken him to the doctor. And you know, it wasn't because she wasn't trying. It was just nobody knew what that was.

Scott Benner 22:22
Jeff was just the kid that after pizza disappeared for an hour.

Sarah 22:26
Yeah, you know, he didn't even have, he said he didn't have any of the digestive stuff. But like, his joints hurt all the time. And like, you know, he's I think six foot two now, but he was five foot two until he was 18 years old. And that's another one of the things that happens with celiac as kids like they just grow really late.

Scott Benner 22:47
Yeah. Is that something? Anything else? I don't mean to pile on. But anybody got a hypothyroidism or is there any other things going on there?

Sarah 22:56
So he has hypothyroidism and so this is mom. So we're kind of waiting for that. That one to drop on my Oh, we know that'll be coming. Yeah, I think that's it.

Scott Benner 23:10
You're in luck. Because, well, family Well, before this posts, I'm going to have an episode up with a really great doctor for hypothyroidism. And I have been looking for that person for my wife and daughter's entire life. And I found her this year. And I am she's going to come on the podcast and I am going to grill her because no one understands it well enough that, you know, a lot of people who treat people with hypothyroidism are just saying, Look, your labs are falling in a range or out of range. Here's a pill it's back in range. You're fine if anything else is wrong. It's not your hypothyroidism and that's not true. And I'm I found the lady. I found her. So awesome. Yeah, I'm excited about that. Okay. Nuts and Bolts in your day. What do you do to cook for people who have celiac? What are your meals look like in a week?

Sarah 24:02
You know, I don't even really think about it anymore. Because it's it's been such a part of our life. You don't really it's like most most basic foods that don't include obvious wheat or gluten free. You know, meat, rice, potatoes, fruit. You know, there are a lot of good gluten free products out there now. So Foster Farms makes these gluten free corn dogs that the kids are obsessed with. So that's been lunch a lot of days since we've been home. And I don't know if it gets easier once you've been shopping a while but I do remember the first few trips to the grocery store. After Jeff was diagnosed, it was like two hours reading labels and it was really not fun.

Scott Benner 24:51
Do you have a fundamental increase in your cost for food?

Sarah 24:55
Oh my gosh. Yes. How?

Scott Benner 24:57
How much do you think like what percentage Do you think your bill went up having to go shopping like this?

Sarah 25:04
I would bet. If I had to guess I'd say like 30%.

Scott Benner 25:10
Whoa, that's not okay. Yeah, that's it, your health insurance to cover that?

Sarah 25:16
Well, and and honestly, if it weren't, so if we weren't shopping for kids also, like, Jeff doesn't eat the frozen gluten free waffles and all that stuff. Like, we wouldn't be buying those things. But you know, when you have two kids, you want them to be able to eat as normally as possible and not have to feel like they're missing out.

Scott Benner 25:37
You don't want to suck all the joy out of their life. Yeah, but we're okay with Jeff not being happy. But the children should have some joy. I hear what you're saying. He just

Sarah 25:44
doesn't even care about that stuff. You know, that's not what he enjoys eating anyway. So we would eat a lot more simply, I think, Well, I

Scott Benner 25:52
think the good news is the two of us, then the good news is you do figure it out. The bad news is you figure it out, and it costs more money. And if you're working for people in your family, I mean, I'm not asking you what you pay a month, but that's, that's a fair amount of money. So it's a lot. Yeah. Oh, geez. This, this is a this isn't fun. It doesn't have any impact on diabetes care, insulin use, things like that.

Sarah 26:22
You know, the only thing we've ever noticed, is like if either Jeff or Maya, get glutened. You know, it can kind of mimic like if you have a stomach bug coming on, and your insulin needs go down for a few days. But other than that, we haven't really seen a big impact on diabetes management.

Scott Benner 26:45
I feel like you're trying to name this episode, get gluten. Get gluten. I don't know if it's gonna happen or

Unknown Speaker 26:51
don't don't get gluten.

Scott Benner 26:55
I think Sarah got gluten by these three people is what I'm saying

Sarah 26:59
that Yeah. Sarah got anti gluten or,

Scott Benner 27:03
hey, I have to ask you just quickly, you're on Instagram, right?

Unknown Speaker 27:06
Yes.

Scott Benner 27:07
So you realize that in my mind, you are that Instagram handle? Like that's your name?

Unknown Speaker 27:13
Ah, okay. That's what you were talking about at the

Unknown Speaker 27:15
beginning talking

Sarah 27:16
about because my name is in my Instagram handle. But

Scott Benner 27:21
okay, do you want people know what your Instagram is? Or? No, no, I don't. So it's Sarah joy dances, right?

Unknown Speaker 27:27
Yes, it is. What's

Scott Benner 27:29
the dancing about? Is that you dancing, trying to escape the grocery store without paying? Or, you know,

Unknown Speaker 27:34
you would you would think that lady's running off with fake bread?

Sarah 27:41
No, so I grew up dancing. And up until just a couple years ago was doing adult ballet classes. So I just loved dancing. So that's my Instagram handle.

Scott Benner 27:53
But you just need to understand and this is meaningless in your life. But in my life, your Sara joy dances, there's no right like I if you paid me to know your last name would never happen, even though we've emailed a number of times. And I've seen it I just It doesn't matter. It pops up in my head like that over and over again. It's just very, it's very interesting how social media does that. Like I could? Yeah,

Sarah 28:16
it does. Yeah, yeah. You totally attach those names to people.

Scott Benner 28:21
I just think that when people say like, oh, the guy on the podcast said, I think that's reasonable. Because functionally I am the guy on the podcast guy. Yeah, I feel like they know my name and they don't care. And I feel similarly about when I meet people in odd ways. So anyway, that's all I had to say that out loud because there's something about the the I like the bounce of the words. Now, if that makes sense or not, there's a pantalla. Sarah joy dances that makes me happy when I read that. So okay, I don't know if he did it on purpose at

Sarah 28:52
it. I did not. I just, I think I chose it because I enjoy dancing. But I'm glad that it rolls off the tongue. Well,

Scott Benner 29:01
it also makes me feel like you're happy even though I'm just assuming it's your maiden name.

Unknown Speaker 29:07
Though. What's my maiden name?

Scott Benner 29:09
is Joey your maiden name?

Unknown Speaker 29:10
It's my middle name.

Scott Benner 29:11
your middle name? Got it? Yes. Okay. Okay. Yep. So you always seem happy to me? Because my brain is really simple.

Sarah 29:21
I don't know. Yeah. Maybe less so over the last five months of being stuck at home. But yeah,

Scott Benner 29:28
just telling your story in my mind. You're that little girl from the peanuts who just is dancing and dancing and dancing and dancing. I'm sure your life has nothing like

Unknown Speaker 29:36
I'm not No, I would say I'm not quite there. Do you

Scott Benner 29:39
find that now? We should figure out which girl in the peanuts is the dancing girl or whatever. You know what I mean, though, right? Yeah.

Unknown Speaker 29:51
Yes. Yeah.

Scott Benner 29:54
Tell me a little bit about Don't worry about it. I'll google it for you. Tell me tell me a little bit about About your daughter's diagnosis, please.

Sarah 30:03
So she has a really interesting story. And I think this is kind of why I had contacted you, you know, with interest in coming on, because she was a super early diagnosis. And I found when she was diagnosed, I couldn't find anyone that was in our situation. So Maya, let's see, she was diagnosed in August of 2018. So we're coming up on two years. And the only thing that clued us in that there was something going on is we had gone to our state fair, we live in California, and the kids right before we left, they wanted to get a treat. And so they got one of those, like dole whip, like that frozen yogurt kind of stuff made with pineapple. And so they each had, you know, this big dole whip. And then on the drive home, I kept saying, she felt really weird. Strange, you know, and, you know, the whole way home, she kept saying, I feel really strange, something's wrong. And so we got home. And it wasn't like, we were regularly checking her blood sugar normally, like, because we hadn't seen any signs of diabetes really ever. And so we pulled out Jeff's meter and like, let's just check your blood sugar because he did just eat, you know, a lot more sugar than you normally one sitting. And I think it was like 225 or something. So it was it was high wasn't considering what she ate. You know, she ate something like that. Now with no insulin, it would be

Scott Benner 31:50
I was gonna say faster. your perspective? No, yeah.

Sarah 31:53
Yeah. Yeah. But it was like, Okay, I knew that wasn't right. So. So I think we, we got her in, I think first to see a pediatrician. And they happen. They checked her a one C and that came back and it was 5.4.

Scott Benner 32:12
So we just caught it at the beginning, then.

Sarah 32:14
Yes. So but because we had, you know, the incident after the state fair, we kind of kept checking her blood sugar, especially after eating Carvey meals and it was regularly getting over 200. So we're like, Okay, this isn't right. So I think at that point, we asked for them to check her antibodies, and those were positive. So then we were able to get her in to see an endocrinologist. But yeah, it was like, the strangest experience because really, her diagnosis just consisted of a normal office endocrinology visit. We went in on a I think it was a Friday afternoon. Because our family, our tradition is on Friday evenings, we do pizza, and we eat dinner on the living room floor and watch a movie. And so I remember it was Friday because it was pizza night. And they literally just sent us home. They're like, here's your prescription for some insulin. We want her to take, you know, this really small amount. I think they started her on like a it was like a one to 50 carb ratio. And no basil. At first. She took no long acting, acting for probably two months. Yeah, and we just we went home and picked up the insulin at the drugstore. And did you get that? Is it on the floor? Yeah.

Scott Benner 33:44
Question about that. This is very important to me. It's gonna seem like a sidebar to you but hardwood or carpet.

Sarah 33:51
So we have hardwood but there's a big rug down.

Unknown Speaker 33:53
Okay, pets. Yes, dog.

Sarah 33:58
So we have one dog now, but at the time we had Well, we still just had one dog at that time, but it was different talk.

Scott Benner 34:07
Would you like a bizarre look into my mind? I would love to sit on a rug. But when I own a dog, I can't bring myself to do it. There you go. That's it right there. That's that's the entire ball of wax. I just I'm like, I don't know there's hair down here. I don't want to be a part of it.

Sarah 34:24
So I do have to say, and this is gonna sound kind of gross.

Scott Benner 34:29
Finally say something gross. Okay,

Sarah 34:32
so the rug, the rug that's in front of the TV. That's like, that's the good rug. We have another rug that's like out closer to where our sliding doors in the backyard are. And when things happen with the dogs, it tends to be the other rug.

Scott Benner 34:48
There's a good there's a fitness and there's a dog get over there. Snoopy rug.

Sarah 34:54
Yeah, there's like the rug that the dogs gravitate toward when something's wrong. And then the one They they leave alone. Gotcha.

Scott Benner 35:01
I'm gonna ask you in a minute about the differences between Maya and your husband's management. But before I do, I'm going to show you the very strange thing that I learned about the peanuts while I was online. So I found an article called like, it's something about like, the peanuts characters you don't know are the names you forgotten. And I see that the two little girls at the play who are dancing, who were the ones I was thinking of, are twins. And I was like, Ah, that's odd. And then I noticed this 55595472 it says one of the most bizarre characters in the peanuts universe was 55595472, or five for short, introduced in September 1963. Five explained that his father was so upset about being seen as just a number, he renamed the entire family as a series of digits. This is probably from the comic strip, right. The last name is taken from their zip code, though when spoken, five insists there's an accent on the for the zip code, by the way, is actually the real one for Sebastopol, California, where Charles Schulz lived at the time. five sisters three and four made a few appearances in the strip before disappearing, but five was occasionally a background character until 1981. You've probably seen three, four and five already and didn't even know it. All three appear in the famous dance sequence in a in a Charlie Brown Christmas, which is where I know them from. And the four Okay, three and four are the twin girls in purple dresses. So, anyway,

Sarah 36:45
that will be the most random thing I learned all day.

Scott Benner 36:48
I think that that's the strangest thing I've ever said on this podcast, too. And anyway, I and most people have been like, what are the peanuts? But Snoopy?

Unknown Speaker 36:59
I'm old enough to know the peanuts. Yeah,

Scott Benner 37:00
Lucky you. celiac and old.

Sarah 37:04
Right? Yeah, I tried turned 40 this year, when I'm proud of it. I'm happy with it. So let

Scott Benner 37:09
me tell you what I told my son the other day when I turned 49. I said there are two options. Turn 49 or die. I was like, Oh, yeah, I'm gonna go with 49 It sounds okay. Right.

Sarah 37:20
Not everyone gets to reach that age. So flip

Scott Benner 37:22
it upside down means I'm still going. Not that 49 is old by any point. But you know, know, when your kids 20 they look at you like you're 1000 when they say you're 49. So yeah, a lot of fun. Alright, so we've learned something about the peanuts. We've learned a lot about celiac. And now And now I'd really like to know. Is there are there multiple management styles in the house? Does your husband do it one way your daughter does another way are we all on the same page, MDI pumps, glucose monitors etc. pumps, glucose monitors and etc. My my I have that here. Let's start with the etc. It's easy, touched by type one.org. Check them out at that address or on Facebook or Instagram. And don't forget I'm doing a little thing for him on February 26 2021. I'd love to see you there. Now pumps. Arden has been using the Omni pod tubeless insulin pump since she was four years old. At that point, she had had diabetes for about two years, and she was getting ready to go to kindergarten, my wife and I decided that we didn't want her to go using syringes. So we did our due diligence, we looked hard at all the other pumps that were available. And at that point on the pod seemed like the clear choice to us. In no time we knew we made the right decision. And now even in hindsight, I can say I'm glad we chose the Omni pod. As a matter of fact, if I had to make the decision all over again today, I would do the exact same thing. Omni pod has come a long way in 12 years. And I'm pretty excited about where it's headed in the future. So listen, how you going to take my word for it right? This is an advertisement. Somebody's paying me to say this. Well, you could find out for yourself. You can go to my omnipod.com forward slash juicebox and Omnipod will send you a free, no obligation demo. It's a non functioning pod that you can wear and see what you think for yourself. Right? You put it on your shower. Oh yeah, you can shower with your pump on if you have an omni pod. You can go swimming. see other things you can do with other insulin pumps swimming. You also might have a hard time with other insulin pumps walking past the doorknob without getting your tubing caught on it and ripping out your infusion set. That won't happen with the Omni pod because the Omni pod is tubeless but you don't need me to sell it to you you need to see it my Omni pod.com forward slash juice box links in the show notes. Links at Juicebox Podcast comm give it a try and see what you think. Would you love a continuous glucose monitor? You don't know where to begin? For me? I'd begin@dexcom.com forward slash juicebox Arden has been wearing some version of the Dexcom for Evers forever. I don't know how to get But she's worn oh my gosh, the G six which she has now she's one of the G five version before the g4 the version before that there was a seven plus before that not sure how they went from seven to four to five to six. But that's nothing to really talk about right now. The point is, Arden has been wearing the Dexcom for four generations of the product, and it just keeps exceeding expectations over and over again. dexcom.com forward slash juicebox check it out for yourself, right. That's what this is all about. I'm going to tell you about it. You go take a look. Don't take my word for it. See what you think. But what I can tell you for sure about Dexcom is this. I can see Arden's blood sugar on my phone. I am not holding my phone right now I've picked it up. I've swiped up, I've put on this Arden's blood sugar is 102. As a matter of fact, I can see that for the last 12 hours, Arden's blood sugar has been between 80 and 102. Right now, it's pretty amazing, isn't it? I see that on an app on my iPhone, I could also see that on an app on an Android if I had one. As a matter of fact, up to 10, people can see that if you want, like a school nurse, or your mother, or somebody to help anybody you want to have involved in your care. I know what you're thinking, that's a pretty good number, right 80 to one though, it is. We do that by using the data that comes from Dexcom to make Bolus decisions that we make through the Omnipod. Sometimes their Temp Basal increases or decreases or extended Bolus is depending on the meals. It really, you know, there's so much that we learned from the data, it just makes dialing those settings, getting them right. So, I mean, I just find it to be so much more easy. So much more easy, easier. Have a made up a word. So you didn't have to say so much more easy. That makes a lot of sense. Listen, our results are ours and yours may vary. But I know one thing for sure, having great tools and knowing how to use insulin is the basis for success with Type One Diabetes. Get yourself a free no obligation demo of the Omni pod today at my omnipod.com forward slash juicebox. And learn more about the Dexcom and get started@dexcom.com forward slash juicebox. And of course, don't forget touched by type one.org. Back to Sarah, Sarah, Sarah. I'm having trouble talking.

Sarah 42:19
So my husband has always been MDI and he does really well with it doesn't have a lot of incentive to change. He likes the simplicity of it. And with Maya, we got her on an omni pod, I think about two months after she was diagnosed, maybe three. And really early on, it was kind of out of necessity. We found it was really hard. Because she has always been in this honeymoon phase, you know, it was really hard managing on just these half unit increments that we could do with the pens. So pretty much right away, we were talking to the endo about getting her on a pump and listening to this podcast. And you know, just all of the contacts that I have with people on Instagram, I realize how lucky we are with her endocrinology practice. They've been super supportive of pretty much anything we wanted to try. And they didn't pull the whole like, Oh, you need to be MDI for six months or any of that or, you know, hear people talk about the endo not wanting to put them on a pump until they're using a certain amount of insulin per day. We didn't encounter any of that.

Scott Benner 43:46
You just they just were helpful and understood. Yeah, we're in the Yeah, we're in the country. Do you live?

Sarah 43:52
So we live near Sacramento? Okay. We're kind of right in the middle of California. The hospital that we go through, you know, so Research Hospital. So I think the mentality is a little bit different.

Unknown Speaker 44:10
very progressive, and yeah,

Sarah 44:13
a lot more a lot more progressive. Because even now, when I, when I think about them sending us home with insulin, you know, when she was needing so little, like, I kind of freaked out. And in my mind, I'm like, Oh my gosh, like, I can't believe they just sent us home. But But you know, that's what she needed. And you made it work.

Scott Benner 44:35
Do you think some of that is just because your husband had type one and they were just thinking like, well, they must know what to do.

Sarah 44:40
I do wonder that? Yeah, I I suspect that that probably had something to do with it. I think if we hadn't had that background. You know, because Maya wasn't in bad shape physically. I don't think that they would have I don't think they would have admitted her to the hospital. But could see, you know, having had a much more in depth visit,

Scott Benner 45:04
but they might just feel comfortable about it.

Sarah 45:07
Yeah, it could be.

Scott Benner 45:08
Yeah. And so if they had that assumption, was that a fair assumption is your husband's like, like, how does he manage? Does he make out? Well?

Sarah 45:19
Yeah, he he does awesome. Actually, it's kind of funny because he and my daughter will like compare their clarity reports. And I think his agency might be sitting just a little bit lower than hers right now. But I won't show her that because she'll get competitive. Oh, that's interesting. But yeah, he does he he manages to stay under six on MDI.

Scott Benner 45:44
That's excellent. Yeah, does he and it sounds like they're looking at clarity. So they're paying attention to to time and range and yeah, all that stuff. That's excellent. Yep. So it's, it's a healthy competition, then. Do you think

Sarah 46:00
it is? Yeah. No, they don't get too weird about it. But

Scott Benner 46:05
nobody, nobody flips out? No, no. They don't they don't fight the 50 yard line or anything like that.

Sarah 46:13
Nobody peels off somebody Omni pod or, you know, like, I'm

Scott Benner 46:16
ahead of you now. Your blood sugar's gonna go up, I'm gonna win. That probably wouldn't be okay. Or healthy. But I think it's so they have this in common. Do you notice a bond with them? That's that wasn't there before? Or is it stronger now?

Sarah 46:31
I do. Yeah, I do. And I think that's made a really big difference in Maya's ability to cope with it is knowing that she's not the only one in the house. I think that's been huge.

Scott Benner 46:47
I think I'd have to agree that that that seems like a bonus, honestly.

Sarah 46:51
Now, actually, I think if I talk about it too much, I'll start crying. But yeah, just having, you know,

Scott Benner 46:58
I could use some tears. It's good for the podcast.

Sarah 47:01
He's, he's a good role model. He's good. He's, he's shown her, you know, that it's important to pay attention and care what your blood sugar is. And you know, not that you have to deprive yourselves of things. But, you know, every once in a while, there are going to be circumstances where it's like, oh, I really wanted to eat ice cream right now. But I should really Wait. Let my insulin kick in. Right? That kind of thing.

Scott Benner 47:27
While you were talking just now I devised an incredibly mean way to make you cry. And I'm not going to do it. I just want you to, but I could, if I wanted to. I was gonna start with terrible strife in the world, go to global warming. Ask if you ever think there's going to be an end to this COVID-19 pandemic? There's a lot right now. Yeah. And then I was just gonna ask you again about the connection between your daughter and your husband and then listen to your cry. And

Unknown Speaker 47:50
right now would be a good way to do it. I don't

Scott Benner 47:53
need you to cry. And that's a beautiful thing. I wonder this? Because you said and then need to dig into this a little bit to ask the question. But you said you think fins on his way did you have his antibodies tested.

Sarah 48:05
So the interesting thing with him, he is antibody negative right now,

Unknown Speaker 48:11
okay.

Sarah 48:12
However, he goes through phases, and they seem to come and go, where he has blood sugar regulation issues. So our endo pretty much thinks. So I was always under the impression that usually the antibodies preceded the blood sugar management issues. But I guess it can actually go the other way around. Also, where sometimes people will actually have trouble regulating their blood sugar before the antibodies show up. So that's essentially what our endo thinks is probably happening. For him, we just kind of have to keep an eye out. So we get as a one c checked a couple times a year. And they antibodies. So right now, it's like he's been sitting at about a 5.6 5.7 a one C. So it's like, just bordering on that pre diabetes range.

Scott Benner 49:16
How I have a question here, and I don't know how to form it. How does it present low blood sugars or high blood sugars? And does he feel like

Sarah 49:24
high blood sugars? Yeah, and he'll feel it he'll actually says he feels shaky. Which is kind of funny. But yeah, like there have been a number of times where he's like, yeah, I feel funny, and we check his blood sugar and it can easily be, you know, 180 he's had times where he he will hit 200. So when he's going through one of those phases, we just kind of have to watch the carb intake.

Scott Benner 49:53
How long do they last the the phases?

Sarah 49:57
You know, it seems like it's been like in Two or three month little stints that seem to happen. Like he'll go through a phase where we have to really watch his diet. And then we'll go through a phase where it's like, nothing's wrong.

Scott Benner 50:10
It took me by surprise there. I didn't think you'd say that long. That's interesting. Yeah, Fox, I'm sorry. Huh? Will he wear a glucose monitor? When it happens?

Sarah 50:24
Yeah. So we actually, when this first started happening, or when we first caught on to it, we had hoped to get approval, even just for short term to just throw a Dexcom on him and see what was going on. But without a type one diagnosis. The insurance companies won't cover it. So

Unknown Speaker 50:46
that was nice.

Sarah 50:48
Yeah, which is fine. I mean, he doesn't seem to mind the finger sticks. Actually. He's, he's funny. It's like, he's very much an engineering kind of mindset. And he likes data. So he actually like he enjoys pricking his finger and seeing the number and like, oh, what does that mean? You know, how old is he? Again? He's, he turns eight on Saturday. So we're two days away from his eighth birthday.

Scott Benner 51:14
Well, congratulations, and Happy birthday.

Unknown Speaker 51:17
Thank you,

Scott Benner 51:18
the acceptance part. Does he think he's getting diabetes at some point?

Sarah 51:23
He does. It's been kind of kind of tricky to talk to him about it. You know, because we don't even know what's going on. And so you know, we just kind of have to say, it looks like you might have diabetes. Like, like dad and Maya someday. And you know, he, he seems generally okay with it. Sometimes less than others, but

Scott Benner 51:49
yeah, I don't see where I would be okay with it.

Sarah 51:52
Yeah, it's, it's tough.

Scott Benner 51:54
Yeah. Or any bad news that crystal balls me when they were like, oh, guess what, when you're 35 hairs gonna fall out? Don't worry, you know, is that good that? You know? I don't think so. Thank you. So that's it. Yeah.

Sarah 52:07
But then again, it's like, you look at our household. And, you know, the three of them have celiac. So if the three of them have diabetes, it's like, you've got good company.

Scott Benner 52:18
Well, you should at least have a clan of people there who understand how to support each other in that.

Unknown Speaker 52:23
Exactly. Exactly. Well,

Scott Benner 52:26
yeah. Probably going to be probably going to be really interesting. I'm going to need to keep this podcast going another 10 years, at least I'd like that Finn on when he's getting ready to go to college. Yeah, that's my new goal. By the way, 10 years to get fit on right before college. I want to hear this.

Sarah 52:43
Oh, yeah, I'm like, I if we can delay it as long as possible. I'm happy with that.

Scott Benner 52:48
I would like to get him back on and have them go, you know, I never got diabetes. I just think

Sarah 52:54
that would be fantastic. Yeah,

Scott Benner 52:55
that'd be pretty cool. But that's, that's super interesting. So I think I think as we enter into the last quarter of the hour, after hearing all this, I got to understand if you're okay, and what you're doing for yourself.

Unknown Speaker 53:12
Um, yeah, I mean, I think

Scott Benner 53:15
smoking weed or something like what are you doing exactly, to relax?

Sarah 53:21
So funny that you mentioned that. Not that that's what I'm doing to cope. But my my husband, Jeff, he's actually a commercial hemp breeder. So he works on he develops high CBD, varieties of hemp. And he also works on lettuce and a little bit on raspberries. So yeah, he's a plant breeder, so.

Scott Benner 53:46
So let us raspberries and hemp.

Sarah 53:48
Yes. And he comes home smelling like hemp.

Scott Benner 53:51
So you got to slow down your what you said gives me questions. What do you go to college for to be able to do that?

Sarah 53:58
So he studied plant breeding. So for many years, he worked on melon. And then he, he loves to work at a small company where he now works on multiple crops, and his cluding

Scott Benner 54:14
family. Bunch of hippies like how do you like it? I'm trying to think about how much I send to college and it's cold told me I'm going to really dive deep on plant breeding. I'd be like, that doesn't sound like you're getting my money back. But it seems like first of all just doing really well. And it's just something that I don't understand. But

Sarah 54:32
yeah, it's just it's a super cool job. So ya know, his family. They're definitely not a bunch of hippies. Actually, it's, it's, it's kind of funny. He kind of like, Yeah, he doesn't talk a ton about his new job with his mom, but

Scott Benner 54:53
she doesn't like the hem part.

Sarah 54:56
I think she's I think she's getting comfortable with it.

Scott Benner 54:58
Let's give her some romaine. She'll be out Oh, yeah,

Sarah 55:01
no, the Romans fantastic. Here's the question. Do you guys have a garden at your house? We we do?

Scott Benner 55:08
Is it ultimate? Like, is it just the ultimate most successful home garden in the world? Or

Sarah 55:14
it's a pretty good home garden. And I'm not responsible for any of it. I I do not do well with keeping plants alive. So

Scott Benner 55:24
you're just eating the lettuce and I'm making quotes around the lettuce, because I'm assuming it's the wheat. But you know, just

Sarah 55:30
actually, it's mostly tomatoes and eggplant. Yeah. So do you live in California?

Unknown Speaker 55:37
Do you use CBD yourself?

Sarah 55:40
I have, um, I don't know that I've really noticed much of an effect. I know it's supposed to be good for certain things and have anti inflammatory properties. But yeah, I don't know that I've ever really noticed a big effect.

Scott Benner 56:00
You don't have to keep going. I want your husband to have a job. I'm just I'm trying to understand everything here. Because I've tried it in the past. And I thought to myself, I don't notice anything happening here. But I know people who run around yelling about it constantly.

Sarah 56:12
Yeah, no, I know, people that swear by it. And even a lot of people who I would think would not touch anything related to that plant that are are huge proponents of it.

Scott Benner 56:22
It's helpful for them. Yeah. Listen, whatever works is the answer. It's just interesting that your husband had joint pain. And he works with CBD. And I thought,

Unknown Speaker 56:30
right, right.

Scott Benner 56:32
Calling was he like, oh, finally I can help myself a little bit. That's really an interesting. Oh, can I get him here? Because my wife bugs me about a garden a lot. And I don't do it for it. And I feel like I would mess it up. And it seems like a lot of work to if I'm being perfectly honest.

Sarah 56:49
It is a lot of work. Yeah, he spends a lot of time out there. But yeah, we're all thankful for it when we have fruit and vegetables to pick, I would imagine. And you're

Scott Benner 56:59
in a good part of the country to do it, too.

Sarah 57:01
We are Yeah, yeah. You didn't grow just about anything here.

Scott Benner 57:06
I'm in the month in New Jersey, that if you walk outside, it just feels like someone like spritzed you with a hose. You're like, Oh, good. I'm wet. It's wonderful.

Sarah 57:16
Yeah, we, we don't have that humidity here. It's hot. But we don't have the humidity cold had

Scott Benner 57:22
a game the other night. And it went forever. It ended like 1115. It didn't start till like eight. And the humidity never broke. It was just like 89% humidity the entire time we were standing out there. The kids were soaked and it was unpleasant. And it was like I got home. My wife's like, hey, do you on like shower, getting a shower? Please? Don't getting a shower. Talk to you afterwards. You know? It's terrible. Yeah, I really want to go somewhere with low humidity. And not too much snow. That's where I would like to live out my days. If I can find that.

Sarah 57:57
Yeah, most of California fits that.

Scott Benner 58:01
Yeah, I want to be able to afford it too. So yeah, there's that I feel like I need I feel like I need a Montana house. For the certain times of year, I would like some open space. And then I need to run somewhere else in the winter where it won't snow. But right that again? Sounds like I'd have to have a lot of money. So that's probably not, you know, less you guys listen to the podcast more. That'd be nice. You want me not to be moist in the summer, you could just tell more people about the podcast and help me

Unknown Speaker 58:30
exactly.

Scott Benner 58:31
I'll tell you everything. It was that easy to get to that I I don't know what I would do. But that doesn't seem like it's that easy. But no, seriously, so we never really got to how you chill out like, what do you do?

Sarah 58:46
What do I do? I exercise a lot. I think that's been one of the one of the upsides of working from home and having kind of a, a different schedule that's not quite as rigid as when we were having to get everybody out of the house is I can throw on my headphones and go for a long run. You know, it's like all the gyms are closed right now. But the one I belong to does outdoor classes right now. And that's kind of my thing.

Scott Benner 59:22
If you didn't have that, and I am probably gonna, at some point make you cry here. But if you didn't have that, would you think you'd be overwhelmed with the idea of this isn't fair, or, I mean, how does it really hit you viscerally?

Sarah 59:38
I don't know. I mean, thinking about it. It's like if I were to write everything on paper, that that we deal with. It might look like a lot, but I think a lot of people deal with a lot more than we do.

So I guess I've just never seen it that way. And I think it's all kind of come on one piece at a time, too.

Unknown Speaker 1:00:00
But

Sarah 1:00:01
yeah, it's like we didn't get hit with everything all in, you know, within one year or something like that. So yeah, I don't know. I just I'm sorry. Okay. It's just, it's our life. And I guess I just haven't, haven't seen it. So I guess we have our challenges that we deal with. But then I see my friends and they have their own challenges that don't pertain to diabetes or celiac, it's like, they have totally different things going on that are equally as challenging.

Scott Benner 1:00:32
Yeah. No, I don't mean. So I think there's a couple of interesting thoughts in there. One is the idea of like, other people have it worse. But I don't think other people's bad stuff makes your bad stuff. Not hard. Yeah, no. But so do you use that? Is that sort of a? Is that sort of a crutch? like to say, look, other people have it worse. So I'm not going to let myself feel bad about this? Or is that a real kind of just life motto? Like keep going things are okay. Do you think

Unknown Speaker 1:01:04
it could be kind of a defense mechanism?

Scott Benner 1:01:10
Six months, like, Sarah was in a home, she she couldn't handle it anymore.

Sarah 1:01:16
I often say I'm like, Okay, if, if we ended up with a third kid, that would be what would put me into the loony bin right now. But no, I think, I don't know. And I think just so I'm, I'm a scientist. And I think I'm just very, like, I see things kind of in a practical way. And so I see, you know, I see diabetes, and it's like, Okay, what can we do to make this easier? Let's do that. And that's just kind of my approach to things. So I think that that helps kind of take some of the emotional component out of it.

Scott Benner 1:01:56
That's excellent. I mean, it's a lot going on whether like, it's like you said, writing it down might look worse than living it. But it's still, it's still a lot. There's time that's lost. There's energy that's lost. And all this stuff impacts other parts of life. And, you know, I've done it, and I'm sure other people have done it, too. You sit back, and it's almost like paying your taxes, right? You're like, what would I have done with that extra money? Like, what would I do with that extra time or, and now you're not having to worry about things like, I'm wondering what I'd be in that space, I'd probably just be watching television, but I like to imagine that I'd be doing something amazing.

Sarah 1:02:31
You spent I mean, your brain gets so good at dealing with diabetes at the same time as everything else in life that you just don't realize how much time? Yeah, you're devoting to it because it becomes second nature. But you know, all day long, I'm glancing down at the Dexcom app or nightscout. And, you know, even if I'm not having to do anything, to intervene, it's like, it's just always there.

Scott Benner 1:02:59
How involved are you with Jeff? Not? I mean, from your description of how he manages, I would think he's not looking for help. But I'm wondering,

Sarah 1:03:06
not at all I mean, I have him, like I have him on Dexcom follow. But he just, he just takes care of it. And I think it was kind of funny, when Maya got diagnosed, I thought like, Okay, I know a little bit about diabetes because of Jeff. But he doesn't talk about it a lot. And so I think I didn't realize, like, I knew nothing about the nuts and bolts. And so I thought I knew more than I did. And, you know, it's like, it only took a couple days to realize that, like, Oh, my gosh,

Scott Benner 1:03:46
well, you know, an episode went up today with a woman who said the exact same thing about her husband. Okay, yeah, just the exact same thing. And then her child was diagnosed, and then it made it more of a thing that was spoken about in the house. But

Sarah 1:04:00
yeah, yeah, I mean, he just he's always just dealt with it. You know, it's like if he has to take three or four injections to correct a high blood sugar, he just does it. You know, he doesn't doesn't whine about it.

Scott Benner 1:04:15
Does it ever impact his mood? And is it hard to remember for you when it does?

Sarah 1:04:22
I think the only times I really noticed it is if he's low. Like he'll he'll get a little chippy.

Scott Benner 1:04:32
Can he can he hear your loving, wifely direction when you're telling him that when he's lower? Can he not respond? Well, it's usually best

Sarah 1:04:43
just to not say anything. Okay. No, he doesn't go like you know, it's not like one of those

Scott Benner 1:04:51
slowly I tell our stories of people

Sarah 1:04:53
yeah, people that like totally turn into a different person and no, it's not anything like that, but

Scott Benner 1:04:59
you don't bring up some or vacation plans are no, no, no, definitely

Sarah 1:05:02
don't bring up anything that's touchy.

Scott Benner 1:05:05
Yeah, that's interesting. I mean, I just again, it's something that you have to consider that I don't think that most people would. would believe. It's almost like when you have kids, and you're like, you need to say something to them you think and you know what they're upset right now. Now's not the time, or they just got home from school, or I'll let them eat something first. You know, it's, it's just another one of those things, to me at least like you just don't, you know, and life doesn't always like do that. Like, sometimes you can walk into a room thinking, you know, we need to buy a new washer and dryer. And I need to say that out loud so that we can get this process going. And Yep, not everybody has to look up and think. I wonder what Jeff's blood sugar is, before I bring it up buying a thing that no one in the world wants to buy, get you exactly

Unknown Speaker 1:05:47
the stuff.

Scott Benner 1:05:49
It's, I just find it really interesting. And I think more so because of the iron thing, because now I have this appreciation for the fact that my personality changes, but my iron gets too low. And then right. I didn't know that. And and I'm grateful for the knowledge because otherwise. I mean, imagine if this was 200 years ago, I would just be the, you know, the guy who gets mad for no reason and sleeps more than he should? You know, and then that's my story forever. Right? Who I Am.

Sarah 1:06:17
Yeah, it's unfortunate that you had to do all the research yourself. No,

Scott Benner 1:06:21
internet wasn't that tough by research? I mean, I sat in this chair and googled things. So I found out what to do. But I also you think about people who wouldn't think to do that? Or would come up and get into the first answer that they get? And if they I guess maybe I have diabetes to thank for that a little bit, honestly, that I didn't. The first thing they said, you know,

Sarah 1:06:41
well, yeah, I mean, I just, I think about that every day, you know, people, people that I meet that have diabetes that are having a tough time, you know, because they go with what the endocrinologist says, it doesn't have to be that way.

Scott Benner 1:06:57
Yeah, no, you can keep looking and learn more things. And I mean, the podcast is a good example of that. Really? Yeah. I didn't ask you at all. But do you like this podcast? Like, why are you on it?

Sarah 1:07:10
Yes, yeah. No, I, we definitely listen. This was like, I think, probably what helped me the most in getting off the ground with helping my good because it's like, I just I knew nothing about, you know, the nuts and bolts of managing diabetes. And all we had was the information that we left the endocrinology office with, which is pretty much that standard, like, use this much insulin, treat a low with 15 grams of carbs, that kind of thing. Which I don't I in no way want to be little, the office that we go to? Because they are fantastic. And I know why. I know why they probably only give you that much that first day. But But yeah, it it's the problem is when

Scott Benner 1:08:03
the first day turns into the six months, and then you're much more than that. And yeah, you've only seen them for 30 minutes, and so far, and you're trying to figure things out, and things are happening every hour and every minute. It. It's not like, it's just a strange thing to say to somebody like, you know, I'll see you in 90 days. And like, well, I'm gonna have a problem every 30 seconds, so that 90 days is gonna wait a long time, you know?

Sarah 1:08:27
Yeah, no, we're, we're super fortunate we, we actually just had a video visit last week. And I was so nervous because we started looping a couple months ago. And our office is, you know, they're super, super supportive and always have been, and I think one of the nurses is actually looping herself. And so I didn't think it would be a big deal. But still, it's like, there's always that anxiety that, you know, they'll be nervous about it or not want to help you with it. But they were, they were super excited for us and even offered to help us if we need it, which I think is almost unheard of, from what I've heard often say,

Scott Benner 1:09:10
yeah, that's the office then for sure. Yeah.

Unknown Speaker 1:09:12
Good for you. Oh, they're awesome. I

Scott Benner 1:09:15
mean, honestly, for somebody with let me just count real quick here. celiac type one, hypothyroidism, celiac? type one celiac, probably celiac. 123456. For a person living with seven different elements in their home. You're doing great. Thank you. You really are Yeah, anything wrong with you, by the way, the doesn't bend right. Anyway,

Sarah 1:09:38
I have some of my own autoimmune issues, but it's not celiac. And it's not type one. So yeah, I have other stuff going on. So hopefully that doesn't also make its way into the kids. But that's TBD.

Scott Benner 1:09:52
Well, we still have plenty of weed for them if they are suffering hippie.

Unknown Speaker 1:09:56
That's true.

Scott Benner 1:09:59
I I don't want to ask you, isn't it funny? Like I had no trouble asking you about three other people's health concerns. And then when you said I have other things, I'm like, Oh, she doesn't seem like she wants to talk about those, I want to ask what they.

Sarah 1:10:11
So it's funny because I don't mind talking about it at all. It's kind of, it's funny to talk about because there's never really been like a name attached to it. So I have a lot of the things that come along with lupus, but I don't have enough of the different symptoms for a lupus diagnosis. Okay. So I kind of have like, lupus light.

Scott Benner 1:10:36
What is what are the symptoms that, that people?

Sarah 1:10:41
So I went through a lot of years with, like, constant fevers, and just like general signs of inflammation in my body. And fevers all the time, like, achy skin, like almost when you have the flu, and it hurts when you're close touch you. That kind of thing. Yeah, it was just kind of a bizarre set of symptoms, just like constant fatigue. Yeah,

Scott Benner 1:11:14
that sucks. Jesus, you guys all found each other. It's good. It's good that you found each other? Honestly, it is. Yeah, no, he's a nice support system here. Somebody who doesn't have any symptoms of anything might be like, I like Sarah a lot. But she says that her shirt hurts her arm. So I'm getting out of this. But

Sarah 1:11:31
like, the funny thing is, I think of us is a really healthy family. Because everyone manages what they have going on. None of the things going on stop us from doing anything. We're all active and healthy. Like, I don't think of us as having various ailments, even though we do.

Scott Benner 1:11:53
I have to tell you how much I agree with you. Because I think of Arden is an incredibly healthy person.

Unknown Speaker 1:11:59
Yeah,

Scott Benner 1:11:59
yeah. And she does have stuff, you know what I mean? Like there's Yeah, don't working through her her thyroid. Like settings, actually, she's got to go get blood drawn, today or tomorrow to look again. And that's one of the problems when you're getting these things adjusted. It's like you almost have to go give blood like it's constant so that the doctor can can really like narrow it down. And I would not describe hardness sick. And never, it never occurred to me, actually.

Sarah 1:12:28
Nope. No, I like when I think of our family. I think we're healthy. Yeah. No, even though I know on paper, the insurance company would disagree. But

Scott Benner 1:12:38
they'd be like, like a big red stamp. Looks like these people out of here somehow. You know, I agree with you. I am I have a very similar if not exactly the same feeling. I think that, that it's probably a bit of a fallacy that people go through life with no problems. I think some people's problems are just a little more persistent than others sometimes. And, you know, to think that you somehow got shaken out of a perfect life. It was this or something else, you know, like you weren't, yeah, it just wasn't gonna go that way. Especially, I don't want to like, you know, I'm not gonna get on a soapbox or anything, but we make a lot of processed foods. And there's a lot of factory farming in the United States. There's a lot of people here we're trying to feed, and there's a lot of fast food for people who can't afford more. And so there are good reasons for everything that exists. But it's just not natural. And I think it's been hard on us. Yeah, you know, for sure. And I think that you and your family and probably my family and a lot of other people are, are seeing what happens after, you know, a couple of generations of red dye number or whatever. Don't worry, yeah,

Unknown Speaker 1:13:47
it's just like, yeah, I've

Sarah 1:13:50
read that the incidence of type one is going up, but they don't really No, why?

Scott Benner 1:13:55
Yeah, well, I mean, the incidences of a lot of things is, seems to be rising. And, you know, sometimes you could look at it and say that there's more people on the planet. But, you know, I just I don't know how to argue with the idea that there are things that we eat, that aren't food, and that can't possibly be good for you. Right? So, yeah, Twinkies shouldn't last for 100 years. And if it does, you probably don't need it.

Sarah 1:14:20
Now, and thankfully, those are not gluten free. They don't make a gluten free version of that. So I don't have to buy those for my kids.

Scott Benner 1:14:27
I'll tell you there's a it's a video somewhere you can find online, but I think it's a McDonald's cheeseburger that someone leaves out. Oh, God never age. So you leave a real cheeseburger out and bugs want to eat it and it gets really disgusting and it starts degrading, but apparently not a McDonald's cheeseburger. It'll hang on forever.

Sarah 1:14:49
Yeah, that's just wrong. not okay.

Scott Benner 1:14:51
And by the way, McDonald's makes the best fast food french fries of the fast food restaurants in my opinion. I'm just saying. They also have

Unknown Speaker 1:14:59
yeah

Sarah 1:15:01
McDonald's. Yeah, they're not super celiac friendly. So actually, my kids have never eaten McDonald's before. Well, that's good. Like, well, yeah, I think that's very good for an American. It's kind of weird.

Scott Benner 1:15:14
There's Um, let's see. This is an article from Oh, it's so funny that if you google McDonald's fries, silicone. It said like there's a an article from 2015. You know, it's a while ago, that says something about let's see, 14 ingredients and McDonald's fries including petrol, bass, chemical and form of silicone found in silly putty. And then there's another one that's only a couple of years old. Scientists say chemicals used in cooking McDonald's fries could help cure baldness. So hey,

Unknown Speaker 1:15:53
listen, Jesus.

Scott Benner 1:15:56
I mean, you know, give a little get a little but but more interestingly, is that the third return is from McDonald's, and they've been pressed to put up a thing about silicon. Do you use silicone polymer in your frying oil as an anti foaming agent? Yes, minute quantities of Wow, dime file Polly ciloxan are present in our oil. Food great added above I have to tell you, one of the things I've done for my own health this year, is cut out processed. Any processor or heat pressed oils, I only use like cold pressed olive oil. I stopped using canola which I lived my whole life thinking was somehow better than oil. I don't use vegetable oil anymore. It's made a big difference. Like I cut those oils out and just went to an intermittent fasting schedule and like lost 16 pounds.

Unknown Speaker 1:16:52
Oh my gosh, that's all I changed.

Sarah 1:16:54
Yeah, that's like the thing right now. And I think I might die if I tried to do that. Because I'm like the eat every two hours type.

Scott Benner 1:17:02
It's 1246 here and I have not eaten yet today. My my, my, my, my time started 45 minutes ago. So the first thing I'm going to do when we say goodbye is eat something. But oh my gosh, um, but I'm smoking some turkey breasts right now, which are probably done, so

Unknown Speaker 1:17:16
I have to go. But that sounds good. Yeah,

Scott Benner 1:17:19
you were terrific. Thank you so much. You shared a lot of information that's valuable. And I can't thank you enough. Please. Thank everyone in your family for allowing you to talk about their health.

Sarah 1:17:30
Yeah, really? Yes. I had to. I felt like I needed to get clearance from my daughter. Like, yeah, how would you feel if I went on the podcast and she was super excited. Because she enjoys listening?

Scott Benner 1:17:42
Well, then she can come on whenever she wants to tell her. As long as she's interesting. You can hold up her into the conversation. I would love it.

Sarah 1:17:49
He has personality coming out of her ears. So you could let me know

Scott Benner 1:17:53
I'd be a good kid. I'd love to hear from a 12 year old about what it's like to have type one diabetes. I seriously would.

Sarah 1:18:00
So she she thoroughly enjoyed that episode with Dylan.

Scott Benner 1:18:05
Oh, he will be thrilled to pickle. Yes, he will be thrilled to know that. He really is. Well, okay. Hey, listen, let's say goodbye. And then you can send me another email and we'll set her up. All right, cool. Thanks so much for doing this. Yeah.

Sarah 1:18:20
Thank you for having me. I enjoyed talking to you.

Scott Benner 1:18:22
Hey, you were terrific. And your connections very clear. So bonus. Oh, good.

Sarah 1:18:26
Good. Because I'm yeah, I'm like, on my iPhone in the bedroom trying to stay away from all the noise and the rest of the house.

Scott Benner 1:18:33
It's really it's crystal clear. It sounds terrific. So thank you so much. Thanks so much to Sarah and her whole family for allowing her to come on and tell the autoimmune apocalypse story. Thanks also to Dexcom makers of the G six continuous glucose monitor to Omni pod makers of the Omni pod tubeless insulin pump, and of course touched by type one.org. Please visit the sponsors. Check out those links in your show notes. Subscribe in your podcast app. tell a friend about the show. Dun dun dun dun dun dun dun dun dun. Oh, are you looking for those diabetes pro tip episodes. You can check them out right here in your podcast player. They begin at Episode 210 where you can find them at diabetes pro tip.com. At that same link at the bottom are all the defining diabetes episodes. Right now the music's just gonna fade out and I'll be gone.

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