#1868 Doomed From the Start

Jordan ignored severe weight loss and fatigue for months before a shocking Type 1 diabetes diagnosis at 25. Listen to his humorous, cautionary tale about his slow-onset honeymoon phase.

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Key Takeaways

  • Jordan was diagnosed with Type 1 diabetes at 25 after ignoring months of severe symptoms, including a 40-pound weight loss, extreme fatigue, and excessive urination.
  • A trip to the dentist for oral lesions (lichen planus) was an early warning sign of a potential autoimmune issue before his official diagnosis.
  • Despite his age, Jordan's primary care doctor quickly suspected Type 1 diabetes, promptly ordering GAD-65, c-peptide, and zinc transporter antibody tests.
  • Jordan is currently experiencing a slow-onset "honeymoon phase," requiring only a small basal insulin dose and frequently experiencing lows due to intense exercise and rebounding beta cell function.
  • Basic health maintenance, such as taking vitamins and digestive enzymes, can be crucial for overall well-being and managing the systemic inflammation often associated with chronic conditions.
FULL EPISODE TRANSCRIPT

Introduction and Sponsors

Scott Benner (0:00)

Welcome back, friends, to another episode of the Juice Box podcast.

Jordon (0:14)

Hello.

My name is Jordan.

I am from Maryland, and I have type one diabetes.

I was diagnosed close to a year ago.

I am about to turn 26 years old.

Scott Benner (0:29)

If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group.

Juice Box Podcast, type one diabetes.

But everybody is welcome.

Type one, type two, gestational, loved ones, it doesn't matter to me.

If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook.

Scott Benner (0:54)

If you're living with type one diabetes, the After Dark collection from the Juice Box podcast is the only place to hear the stories that no one else talks about.

From drugs to depression, self harm, trauma, addiction, and so much more.

Go to juiceboxpodcast.com, up in the menu, and click on after dark.

There, you'll see a full list of all of the after dark episodes.

Nothing you hear on the juice box podcast should be considered advice, medical or otherwise.

Scott Benner (1:24)

Always consult a physician before making any changes to your health care plan.

This episode of the juice box podcast is brought to you by my favorite diabetes organization, touched by type one.

Please take a moment to learn more about them at touchedbytype1.org on Facebook and Instagram.

Touchedbytype1.org.

Check out their many programs, their annual conference, awareness campaign, their d box program, dancing for diabetes.

Scott Benner (1:53)

They have a dance program for local kids, a golf night, and so much more.

Touchedbytype1.org.

You're looking to help or you wanna see people helping people with type one, you want touched by type1.org.

Today's episode is also sponsored by the Tandem Mobi system with Control IQ plus technology.

If you are looking for the only system with auto bolus, multiple wear options, and full control from your personal iPhone, you're looking for Tandem's newest pump and algorithm.

Scott Benner (2:25)

Use my link to support the podcast, tandemdiabetes.com/juicebox.

Check it out.

The podcast is also sponsored today by the Eversense three sixty five, the one year wear CGM.

That's one insertion a year.

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Scott Benner (2:42)

And here's a little bonus for you.

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A Slow and Ignored Onset

Jordon (2:51)

Hello.

My name is Jordan.

I am from Maryland, and I have type one diabetes.

I was diagnosed close to a year ago.

I am about to turn 26 years old.

Scott Benner (3:05)

Oh, well, about to be happy birthday.

Good for you.

Jordon (3:08)

Thank you.

Thank you.

Scott Benner (3:09)

Maryland, the state that connects easily to Pennsylvania, no one realizes it.

Jordon (3:13)

That's right.

Yeah.

Mhmm.

Sometimes it, depending on how far into Pennsylvania, it could be, like, an hour drive or a four hour drive to get there, though.

Scott Benner (3:23)

Yeah.

My son went to college in Central PA.

Jordon (3:26)

And Oh, really?

Scott Benner (3:26)

Yeah.

And he had he's a friend that lives in Maryland, his parents would show up at baseball games, and I'd always be like, how long did it take you to get here?

And they were like, oh, forty five minutes?

And I was like, wait.

What?

Scott Benner (3:36)

Long.

Yeah.

That's okay.

Jordon (3:39)

That's kinda bizarre.

Scott Benner (3:40)

I kinda don't understand the map, Jordan.

That's all.

Jordon (3:43)

But, yeah, me neither.

Scott Benner (3:44)

What precipitated this diabetes thing?

Was anything going on?

Was your health weird, or did it come on all at once?

What was the process?

Jordon (3:51)

Truthfully, Scott, do not know.

I used to think that I was super in touch with my health.

Truth be told, I just kinda got sick December 2024, and then it was like I I never knew if I was gonna wake up in the morning and feel perfectly fine or feel like death.

Mhmm.

And it took me a good six months before I went in to the doctor, and I I just went in for a physical.

Jordon (4:20)

I wasn't even prepared to to be like, hey.

I've been feeling ill for a little while.

I just thought, you know, we'll see how things go.

Scott Benner (4:29)

Were you, like, 24, 25 years old at that point?

Jordon (4:33)

Yeah.

So I just I had just turned 25 when I got diagnosed.

Scott Benner (4:37)

Any health issues throughout your life prior to that?

Jordon (4:40)

Asthma, allergies.

That's pretty much it.

Just the asthma and allergy.

Scott Benner (4:44)

Nothing that makes you predisposed to just accept not feeling well randomly for no reason?

Jordon (4:50)

Correct.

Yeah.

Yeah.

Nothing like that.

Scott Benner (4:51)

Why'd you do that then?

Think I I know we've been talking for two minutes, but, like, think on that for a second.

Like, how come you felt so horrible periodically and were just like, I

Jordon (5:02)

have never been, like, perfect in terms of of, you know, eating well, exercise you know, like, I'll I'll eat a crappy meal with my friends kinda frequently, you know, interspersed with my healthy meals and stuff like that.

So I kinda figured, like, hey.

Maybe I'm I'm just so inconsistent with my health that, you know, I'm just some days, I wake up feeling crappy, and sometimes I feel good.

Scott Benner (5:30)

This is what it feels like when your body's processing a half a pizza and a bag of Doritos.

Jordon (5:34)

Exactly.

Scott Benner (5:35)

I see.

And are you living at home or alone by then?

Jordon (5:39)

I, live at home.

Scott Benner (5:41)

Okay.

So so so you there are people around.

Like, you could turn to your mom and say, I don't feel good, but you just kinda don't do that.

Jordon (5:50)

Yeah.

Unless it was, like, really taking its toll on me unless, you know, I was staying in bed for five hours longer than I usually did, then she you know, it would be obvious to everyone else, but I I just didn't really mention it.

Scott Benner (6:06)

And that was happening sometimes?

Get up in the morning, you're like, I can't I can't function?

Jordon (6:11)

That happened more frequently, towards the diagnosis.

So, just for reference, I usually wake up around seven in the morning.

There were a couple mornings that I woke up at eleven or noon.

It just it didn't make sense to me, and that was worrisome.

I was like, what the hell is you know?

Scott Benner (6:33)

Oh, wow.

Like, you'd open your eyes and think, how is it possibly 11AM something's wrong?

Jordon (6:38)

Yeah.

There was one morning I think I woke up at, like, nine, and I was I couldn't move my body.

And so I was like, maybe I just need an extra thirty minutes to sleep, and then I woke up at one in the afternoon.

Scott Benner (6:52)

Because you know how frequently people wake up and can't move.

Jordon (6:57)

Honestly, though, that had never happened to me.

Scott Benner (7:00)

Yeah.

That's why I should have panicked you.

Jordan, what's Why is everyone not as worried about themselves as I am?

I wake up and I have that feeling.

I immediately I'm screaming.

Scott Benner (7:12)

So what?

Everybody here shot.

Jordon (7:13)

You know?

Scott Benner (7:13)

I need help.

Yeah.

Yeah.

Well I Okay.

How long does this go on for, Jordan, before you, like, you speak up or do something?

Jordon (7:23)

I would say probably, like, two months.

Like, from my birthday in springtime to I was diagnosed in June.

So, yeah, a couple months.

Scott Benner (7:36)

Wow.

Jordon (7:37)

But I think from the first sorry.

I don't I don't wanna be gross or too specific here.

But

Scott Benner (7:42)

No.

Definitely be gross and too specific.

Jordon (7:44)

Go ahead.

In December so I was diagnosed in June 25.

In December 24, I went over to a friend's house, and we were just hanging out for most of the day.

And it was Christmas time, so they had those, like, Godiva snowmen or whatever it is.

Mhmm.

Jordon (8:07)

And I was, like, I was housing on the sky.

Like, I ate enough to kill a baby elephant and went home later that night, and I threw up for probably, like, five hours.

I was going to the bathroom, like, every ten minutes maybe.

Scott Benner (8:29)

Jordan, what what they call, coming out of both ends?

Jordon (8:32)

No.

No?

No.

Nothing was

Scott Benner (8:35)

were peeing and throwing up?

Jordon (8:37)

I was just throwing up.

Scott Benner (8:39)

Oh, you say oh, going to the bathroom.

I thought you meant when you say going to bathroom.

Jordon (8:42)

I'm sorry.

Scott Benner (8:43)

No.

Don't be sorry.

That's me.

I thought you meant

Jordon (8:45)

I made it to the bathroom.

That's why I added it in the story.

Scott Benner (8:48)

The vomit.

Okay.

Jordon (8:50)

Yeah.

People give you a,

Scott Benner (8:51)

like, side eye because those things are kind of expensive, those little chocolates where they're like, what's up with him?

You you know what I mean?

Jordon (8:57)

Yes.

But I have always I've always been the kind of guy that, like, if I'm hungry, I'm gonna eat all the food and I don't really care.

Scott Benner (9:05)

Anybody thinks about it?

Yeah.

Yeah.

I mean, DKA.

Right?

Scott Benner (9:10)

No.

No?

Okay.

Go on.

What happened?

Jordon (9:13)

This was this was six months before I went to the doctor.

Scott Benner (9:17)

Oh, okay.

Keep going.

Jordon (9:18)

So I was like, oh god.

Dying.

Called out of work for the next two days, but, honestly, I was fine.

That little bout finished up.

I woke up the next morning fine.

Jordon (9:30)

It was so weird.

I think I went on being okay for another few months before that, like, terrible fatigue set in.

Scott Benner (9:39)

Yeah.

Jordon (9:39)

And then I was like, okay.

Let's let's schedule

Scott Benner (9:43)

I go to doctor.

Yeah.

Hey.

You call out of work.

Do you say, hey.

Scott Benner (9:47)

I ate a bunch of, Santa Claus chocolates and threw up.

I can't come in, or you just make something

Jordon (9:52)

Scott, I'm a master at making up excuses for getting out of work.

I don't remember what I said, but they were like, oh my god, you know, please take care of yourself.

Yeah.

Scott Benner (10:03)

I I don't know many people are gonna have contacts for this, but the comedian, Arty Lang, used to be on the Howard Stern Show, and, there'd be there's calls of him, like, calling and saying he couldn't come in to do the show that day, he was like, hey.

I'm I'm not feeling great.

He was on heroin.

He was on heroin, by the way.

It was like he would but he would do he would do a little cough.

Scott Benner (10:24)

Yeah.

Jordon (10:26)

Who knows what they thought of me, but I, again, didn't care.

Scott Benner (10:30)

Don't make me sit back, Jordan, and think about the arty days on the Stern Show.

They were perfect.

Jordon (10:34)

Oh my god.

Scott Benner (10:35)

But you have no idea what I'm talking about.

It's okay.

Jordon (10:37)

I don't.

Scott Benner (10:38)

You should Google Arty Lang's nose at some point in your life.

Jordon (10:41)

For it now.

Yeah.

Scott Benner (10:42)

Yeah.

Just to see what just to see what the cocaine could do to you.

Jordon (10:45)

Right?

Yeah.

Exactly.

Scott Benner (10:46)

Jordan, are your parents not involved at all?

How are you just what if you just set up a physical?

Jordon (10:51)

I've been like this since I was younger.

I always just kinda took care of business before it could get to my parents.

And then when they found out things were going okay, they were like, oh, good job, Jordan.

Scott Benner (11:04)

You know?

Lot of kids?

Lot of brothers and sisters?

Jordon (11:07)

Nope.

Just me and one older brother.

Scott Benner (11:09)

What are you protecting them from?

Jordon (11:11)

Oh, god.

I don't know.

Scott Benner (11:14)

Come on.

Does it about seem like she can't take it?

She get upset easily?

What it's it's simple psychology.

Figure it out, Jordan.

Scott Benner (11:20)

Why do you keep it from them?

Jordon (11:22)

Yes.

What you said is is pretty spot on.

Scott Benner (11:25)

Okay.

Alright.

Jordon (11:26)

I just to to kind of save them from stressing out because they're both emotional people, and I'm an emotional person.

So I think it also stressed me out when my parents got concerned.

Scott Benner (11:39)

Makes sense.

Jordon (11:39)

So I was just like, let me take care of this.

And especially at 25, I was like, you know, I can I can schedule my own doctor's appointment?

Scott Benner (11:50)

Well, you feel like an adult, first of all.

And secondly, you're not, by the way, but you feel like an adult.

And, by the way, I think I had a kid when I was 27.

I wasn't an adult then either.

But also That's crazy.

Scott Benner (12:00)

Yeah.

Also, you want to yeah.

I know younger people now are like, when did you have children?

That's not happening.

Jordon (12:05)

Hard to imagine.

Scott Benner (12:06)

Yeah.

Yeah.

But you you, you know, you're like, look.

I'm old enough to take care of this.

Also, I'm a healthy person.

Scott Benner (12:12)

There's nothing really wrong.

You just keep thinking it's gonna go away.

Right?

Right.

Correct.

Scott Benner (12:16)

Yeah.

I gotcha.

Okay.

So you head off to the doctor.

Do they pick it up at the physical?

The Dentist and the Physical

Jordon (12:22)

Well, you know, the in the the office, my visit with the doctor was fine.

Blood pressure was good, heart, lung, blah blah blah, all that crap.

But I oh, I forgot to mention this.

I am gonna backtrack.

Sorry.

Jordon (12:35)

But it it

Scott Benner (12:35)

Go ahead.

Don't be sorry.

Jordon (12:37)

Fills in the story nicely.

I had gone to the dentist a couple months earlier, and she found she used the word lesions, which creeped me out.

Some lesions in my mouth and said this looks like oral lichen planus.

I don't know if you've ever heard of that.

Scott Benner (12:55)

Okay.

Jordon (12:56)

But she said it can often be triggered by an autoimmune issue.

And I was like, I I don't have any autoimmune issues.

And the hygienist was like, have you been to the doctor recently?

Got your labs look good?

And I was like, well, yeah.

Jordon (13:11)

They looked fine three years ago.

Scott Benner (13:13)

Three years ago?

They

Jordon (13:15)

were perfect.

That was the last time I had been to the doctor.

So I was like, you know, I was just I was panicking a little bit and just trying to still cover it up at that point.

Scott Benner (13:26)

If I can I just say for dentists who are listening, the reason we don't trust you, and we should, dentists are a good first line of defense for bigger issues?

Yes.

But we don't know if you're trying to upsell us some peroxide trays or if there's really a problem.

You understand?

Jordon (13:39)

Seriously.

Yeah.

Scott Benner (13:40)

You seem like a Charlton once in a while, dentist.

Try not to don't be so thirsty with the money all the time, and maybe we'd listen to you when you said there was

Jordon (13:49)

a problem.

I don't trust you.

Scott Benner (13:50)

Mhmm.

I know.

I know.

Go ahead.

Jordon (13:52)

So yeah.

But because at first, was like, oh, this could be precancerous and blah blah blah blah blah, and then she came up with the autoimmune thing, which also didn't make sense to me because I'm like, why would I have mouth cancer or an autoimmune issue?

Scott Benner (14:08)

Do you have any context for what autoimmune means when she's saying that?

Jordon (14:12)

No.

Scott Benner (14:13)

Okay.

Jordon (14:14)

Not none whatsoever.

And, so I figured this was in about April, I think.

So two months before my diagnosis, and that's when I set up my physical because I was like, okay.

It's, you know, probably best to see.

So I mentioned into this.

Jordon (14:31)

Yeah.

Why not?

What the hell?

Scott Benner (14:33)

Just in case my lesion is mouth cancer, why don't I maybe take a looky loo and see what happens?

Right.

Right.

What's your expectation going to that doctor?

Are you thinking, like, there's nothing wrong, or do you are you worried something's really up?

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Jordon (16:59)

Oh, I'm absolutely thinking nothing's wrong.

Even though I'm sleeping until noon, have lesions in my mouth, and yeah.

Yes.

And by the way, I've lost 40 pounds.

And yeah.

Scott Benner (17:16)

I think this podcast is just a look into all of your stupidity and anxiety.

Not you, Jordan.

Everybody everybody listening.

I love I love these first of all, I'm glad you're alive.

But, like Thank you.

Scott Benner (17:27)

You know, like, listening back in con like, you know, with some context in hindsight.

Mhmm.

Really, like, I everyone's listening going like, oh my god.

What a dumbass.

Why didn't he go to the doctor?

Scott Benner (17:38)

But you all do the same thing.

So yeah.

I'm the only one who screams the minute something's wrong.

Jordon (17:44)

Yeah.

Yeah.

And so I well, I had lost all that weight, but I also began working as a personal trainer shortly before that point, and I started rock climbing, like, pretty intensely.

So I was doing all this crap, and I figured, hey.

Maybe maybe all of this is because I'm I'm overtraining a little bit anyway.

Scott Benner (18:08)

Can I interject one more time?

I'm sorry.

I know I'm choppy up here, but but, like, I want everyone to listen to what just got said there.

Jordan, 25 years old, has turned into a personal trainer.

You're out there giving him your money.

Scott Benner (18:21)

He can't figure out what's

Jordon (18:22)

how to take care of myself.

Scott Benner (18:23)

He can't take care of himself, and you're paying him to help you take care.

Just open up chatty p t and ask it for a workout plan.

Okay?

I'm sorry Jordan's out of business now, but, like

Jordon (18:33)

Do it.

Scott Benner (18:33)

Stop thinking everybody knows something.

You shouldn't trust me.

I don't know what you're doing right now.

Like No.

Go ahead.

Scott Benner (18:40)

Go ahead.

Sorry.

Jordon (18:43)

Oh, but yeah.

That was that was pretty shameful moment for me.

So I'm in the doctor.

I got the blood drawn, and I walked out.

It's springtime.

Diagnosis and the A1C Shock

Jordon (18:54)

It's beautiful outside, Scott.

And I left the doctor.

I was like, I am so healthy.

You know?

I'm feeling great.

Jordon (19:01)

I just, just went to the doctor.

I'm a big boy now doing that by myself.

And, so the lab results start coming in later that afternoon.

And it's like, oh, that looks good.

Electrolytes were a little bit off, but nothing crazy.

Jordon (19:21)

And then the, whatever it's called, metabolic panel comes in, and it's like, good.

Good.

Good.

Good.

And then glucose is three fifty seven.

Jordon (19:30)

And I was like, oh, well, that's, you know, that's a bit high.

Scott Benner (19:35)

Seems wrong.

Could be feeding those lesions, maybe, all that sugar.

Jordon (19:39)

I was like, maybe.

I I came up with everything, every excuse, and I was in the car with two friends at the time.

And one of them is is very smart, still love her, but at this point in time, I was I was ready to jump back and strangle her.

But she was like, oh, you know, like, if you're if you eat late at night, you know, maybe your food wasn't didn't have time to digest, and so you have and I was like, yeah.

But it's 03:57.

Jordon (20:09)

That's pretty

Scott Benner (20:10)

Shut up, Patty.

You don't know what you're talking about.

Jordon (20:12)

Yeah.

I was like I don't know.

I I was, like, shivering, I swear.

And my friends were just kinda like, what's wrong with you?

And then I went home and told my mom, and she just looked at me, like because my mom is she spent a lot of time working in the center for biologics, and, you know, she's she's familiar with, like, islet cell transfers.

Jordon (20:40)

So she knew all about diabetes and all that stuff before I did, I guess.

She her face was not very comforting, just to say the least.

Scott Benner (20:50)

Yeah.

Jordon (20:51)

And so I was like, okay.

It's fine.

You know, we'll wait for more.

And then the a one c came in, and I almost passed out because it was fourteen point five.

Scott Benner (21:03)

Wow.

Jordon (21:04)

And I was just kinda like, okay.

So I guess

Scott Benner (21:09)

I have diabetes.

Jordon (21:10)

That's that's something Yeah.

Scott Benner (21:12)

Connected there?

Do you say I have diabetes when you see the a one c?

Jordon (21:16)

I think I knew, but verbally, I was not acknowledging it.

I knew, but I was still trying to, I think it goes back to, like, not wanting to, you know, have everyone be concerned and stuff.

Scott Benner (21:31)

You all think backwards.

Can I just say can if you put me in this exact situation, here's what happens to me?

I have something I I get a little bit of, what they call information.

Then and then if it's enough to actually be concerned about, which is where you are, then I deep I deep dive it, and I make sure I understand all the possibilities, whether they're uncomfortable or not.

And then I wait to get the rest of the information so that when the rest of the information comes, I can apply what I've learned to the info the new information I have and come to a reasonable conclusion.

Scott Benner (22:00)

Then whatever that conclusion is, we move forward.

Jordon (22:03)

Well, listen, Scott.

Scott Benner (22:04)

Yeah.

Jordon (22:05)

Congrats on being level headed, but some of us, when we do a deep dive, get even more crazy and anxious and paranoid.

Scott Benner (22:14)

That doesn't happen to me.

I just got because I think I've been through so much.

I'm expect something terrible to happen.

I'm okay.

I just wanna I just wanna know, like, what am I supposed to do when that occurs.

Scott Benner (22:26)

Yeah.

And then if it doesn't occur, it's like winning the lottery.

Jordon (22:30)

Yeah.

Scott Benner (22:30)

Yeah.

Like, everybody's like, oh, I I found a lump.

I didn't wanna get I didn't wanna get it looked at.

Get it looked at.

It's probably nothing, and you're gonna feel like you won.

Scott Benner (22:37)

Like and if it and if it is something, maybe it saves your life.

Yeah.

Little bit of bad news

Jordon (22:43)

happening here.

Scott Benner (22:43)

Little bit of bad news, lot of good news afterwards.

And Yeah.

Sure some people die.

But, like, if that's me, I also I I also won't care because I'll be dead.

Do you understand how it's so simple.

Scott Benner (22:55)

I can't explain the world to you people every day.

Okay?

This is very, simple.

That's all.

You're either gonna live or you're

Jordon (23:03)

gonna gonna say something like this to me when I talk.

Scott Benner (23:06)

Oh, Jordan, you're a listener.

That's nice.

I appreciate your support.

Jordon (23:09)

I am yeah.

Yeah.

Scott Benner (23:10)

Okay.

Yeah.

It's very simple.

You're either gonna live or you're gonna die.

If you're gonna live, do it as well as you can.

Scott Benner (23:15)

And if you're gonna die, it doesn't matter.

Do you understand?

You'll be dead.

Jordon (23:20)

Yeah.

Scott Benner (23:20)

You know who's not worried about how they feel right now?

Benjamin Franklin.

Jordon (23:24)

Dead.

Dead.

Scott Benner (23:25)

Yeah.

Yeah.

He couldn't possibly care less nor would he be able to if he could.

Do you understand?

He's gone.

Jordon (23:31)

Very true.

Scott Benner (23:32)

I can't anymore, Jordan.

That's it.

This is the last it's the last episode.

I can't do it anymore.

Okay?

Scott Benner (23:36)

It's all so simple.

The one that ended the podcast.

No, Jordan.

It's everybody together.

It just it came together cumulatively, and this is where it exploded.

Scott Benner (23:46)

I just can't alright.

Alright.

Fine.

I'll stop.

Let me relax.

Scott Benner (23:49)

Hold on a second.

Let's put an ad here.

Jordon (23:52)

Let's do it.

Yeah.

Okay.

What do you

Scott Benner (23:54)

think it'll be?

US med?

Omnipod?

Who knows?

Jordon (23:56)

We'll find out.

Scott Benner (23:57)

We'll find out in a second.

Okay.

Go ahead.

I'm sorry.

Continue on.

Scott Benner (24:00)

I'm gonna stop.

But I get no.

No.

I felt like I pulled a soapbox out.

I didn't mean to do that.

Scott Benner (24:04)

Go ahead.

Jordon (24:04)

Not at all.

So got yeah.

A one c came back, and it was ridiculous.

And so I just had to wait because the doctor was out for the day.

It was, you know, after 05:00 at that point, she'd gone home.

Jordon (24:17)

Mhmm.

So I I wasn't expecting it, but I I got a call at, like, 09:00 in the morning, and she was like, are you okay?

Like

Scott Benner (24:27)

The are you okay call?

Jordon (24:28)

Yeah.

Are you feeling okay?

Because it looks like you have diabetes.

And she asked she then asked me all of the, like, have you been eating a lot more sugar in the last three months?

Have you been well and I was like, yes.

Jordon (24:44)

I don't know.

Because at that point, I'm like Yeah.

My god.

I gave myself diabetes because I have

Scott Benner (24:49)

so that Santa Claus'?

Jordon (24:51)

Exactly.

Scott Benner (24:52)

Yeah.

Jordon (24:53)

So I said yes even though it wasn't really true.

I mean, I I eat really well.

Mhmm.

I asked her, like, what type is this?

And she was like, I I have no clue.

Jordon (25:05)

We're gonna do some more testing.

And see this, I've listened to, you know, a million episodes of the podcast and have heard about how people's doctors have treated them, you know, especially, like, young adults being diagnosed and initially misdiagnosed.

Scott Benner (25:24)

Yeah.

Jordon (25:24)

But that man, this woman, she put in the GAD, 65 Right away.

Immediately.

Scott Benner (25:30)

Good for you.

Jordon (25:31)

So I I went in that after that phone call the next morning, got another blood draw in my, I think I was at, like, two seventy five fasting.

Mhmm.

And I had probably been not eating, you know, ever since seeing those numbers, and so two seventy five was high.

Scott Benner (25:50)

Two questions.

How did you know to ask what type it was?

Jordon (25:53)

Because something just didn't seem right.

I mean, I, you know, I went to to school for nutrition science.

You know?

I took anatomy, physio blah blah blah.

And I was just kinda like, I'm 25 years old.

Jordon (26:08)

I am at a normal weight.

I eat pretty well, and I'm I'm ridiculously active.

So, like It would be

Scott Benner (26:15)

odd if I had type two diabetes.

Yeah.

Okay.

Jordon (26:17)

Yeah.

Even even though I'm not perfect with my diet.

Scott Benner (26:21)

Mhmm.

Okay.

Jordon (26:22)

I have two friends with type one.

Scott Benner (26:26)

Oh, okay.

Jordon (26:27)

So I was Well, that's helpful.

I I I'm I'm aware of type one even though I I I didn't know too much

Scott Benner (26:32)

about it.

You all don't live on the same street next to a toxic waste dump or something like that, do you?

Jordon (26:37)

Hey.

We live pretty damn close, so there might be something there.

Scott Benner (26:40)

No kidding.

Okay.

Keep going.

Jordon (26:42)

Yeah.

So she she told me we would do some testing, and the GAD it came back.

I think the reference value was, like, normal is less than five international units or something, and mine was, like, 15.

So I was like, oh, so that's positive.

They said it's kind of, like, on the low end of positive, but still.

Jordon (27:04)

You know?

Scott Benner (27:05)

Mhmm.

Jordon (27:06)

And then they tested c peptide, which was also, like, just under normal, the low end of normal, and that was after eating.

And then they did the zinc transporter antibody.

Yep.

And that one was also positive, but on the low end.

So I that kind of all made sense with the fact that I was not in DKA yet.

Scott Benner (27:29)

Yeah.

The slower the slower diagnosis that was happening to you.

Jordon (27:33)

Yes.

Yeah.

Let me just say again, I I wanna give a lot of credit too, but this was my primary care.

Scott Benner (27:40)

Wow.

Wow.

Jordon (27:41)

Yeah.

Young lady, which I think had a lot to do with it, she just put all that in right away, got me on insulin right away.

Scott Benner (27:49)

You think because she was young, she's motivated to do a good job.

She's still interested in in her work, that kind of thing.

Is that what you're saying?

Jordon (27:55)

Correct.

Yeah.

Because she left, actually, I was very upset because I got an email saying that she was no longer with Kaiser.

And I don't know if it doesn't matter if I say that out loud.

But No.

Jordon (28:08)

Anyway so I had to choose a new one, and I chose an older man who we talked about the fact that it was type one.

Yes.

Antibody positive.

But I looked back at the clinical notes after my appointment, and I was so pissed off because he had written down that I needed here I am sitting in his office, a hundred and thirty pounds.

I'm, like, five nine.

Jordon (28:32)

And he writes down that I need exercise counseling and diet counseling.

And, like, he's he's talking to me as if, oh, yeah.

I bet you're doing all that exercise to try to, you know, like, lower your blood sugar and keep your weight in check.

And I was like, not really.

I I lost 40 pounds without trying.

Scott Benner (28:55)

Yeah.

Yeah.

One thirty on a five nine frame.

You must have looked like a 12 year old girl.

Jordon (29:00)

Oh my god.

Yeah.

Yeah.

Yeah.

So this was one one of the things that really made me upset, concerned before I made the doctor's appointment was I went to a baseball game with my friends, and we took a group picture.

Jordon (29:15)

And I was on, like, the side, so I had to, like, lean in.

And my neck, ugh, it looked so gross.

It was, like, so skinny and long, and my face, my cheekbones were sunken in.

Scott Benner (29:29)

I'm five nine, Jordan.

And the last time I weighed myself, I was one seventy six, and I look thin.

Like like Yeah.

Jordon (29:38)

Yeah.

You know what I pictures of you since you've, since you've lost weight.

And I'm like, wow.

That guy's that guy's thin.

Scott Benner (29:43)

Photograph well.

But, like, I'm telling you in person, like, I I look like, I look thinner.

Like and I can't imagine.

If you took 40 more pounds off of me, I'm trying to imagine what that would be like.

Jordon (29:54)

Yeah.

I go to this brewery with my friends.

We play, like, trivia and stuff there, and they have these terribly uncomfortable wooden chairs.

Scott Benner (30:04)

Oh, yeah.

Jordon (30:04)

And I started to have to get up, like, every few minutes to, quote, go to the bathroom.

But, well, I was doing that because I was peeing all the time.

Scott Benner (30:15)

But your butt hurt.

Jordon (30:16)

Yeah.

My Yeah.

Hurt.

And I could see my hip bones.

I could see my my shoulder points were just yeah.

Scott Benner (30:25)

Yeah.

Yeah.

I have trouble on a plane.

Some of the airline seats are really uncomfortable now because I my ass is gone.

Like, it just yeah.

Scott Benner (30:33)

I'm not even kidding.

Jordon (30:34)

Cushion.

Scott Benner (30:34)

Yeah.

They're they're they're yeah.

No kidding.

Yeah.

Like so it it's no joke.

Scott Benner (30:39)

Your bones are pushing on your skin.

Yep.

Yep.

Oh, Jesus.

Jordon (30:43)

And

Scott Benner (30:44)

Look at you.

Jordon (30:44)

And that yeah.

I know.

But, you know, the funny thing that I just I gotta be honest.

I gotta mention it.

I got out of the shower one day and was like, damn, dude.

Jordon (30:56)

Like, you have been doing a great job, you know, killing it in the gym.

Scott Benner (31:01)

Yeah.

I am ripped.

Look at me.

Jordon (31:04)

So at the on the one hand, you know, cancerous lesions in my mouth and vom all that stuff.

Scott Benner (31:10)

But look how thin I am.

Yeah.

Jesus.

Yeah.

Usually the way, a number of people have said that to me over the years.

Scott Benner (31:17)

It's usually women.

I just want you to know.

But, like, it's, today, it's you.

I like that.

I'm like, you're like, oh, look at me.

Jordon (31:22)

Well, I I've always been healthy, but always had a my it's funny.

My grandfather always said I had baby fat, and that always pissed me off.

Yeah.

So I was like, damn.

I'm finally, it took me until 25, but I lost my baby fat.

Family Health History and Autoimmune Links

Scott Benner (31:37)

Is he is he still alive?

Did you go show it off to him?

Jordon (31:40)

He is still alive.

And, you know, I this, kinda off topic off topic, but he was one person I thought that I would really be able to talk to about the diabetes, but he didn't even understand.

Scott Benner (31:53)

Why'd you think you'd be able to talk to him about it?

Jordon (31:55)

I don't know considering he was making, you know, asinine comments about my weight and body composition when I was a child.

But

Scott Benner (32:05)

Great generation.

The greatest generation.

You know what I mean?

Jordon (32:08)

Yeah.

Seriously.

He's a a guy who fancies himself to be wise.

I can I'm trying to put it as nicely as I

Scott Benner (32:16)

can.

So when you were younger, you were like, I think this guy knows something.

He tells me he knows something.

Then you went to him, you're like, you don't know anything about this.

Jordon (32:23)

Correct.

Scott Benner (32:23)

Yeah.

Yeah.

He's what they call, foolish.

Jordon (32:26)

Yep.

Yeah.

Some might say.

Yeah.

Scott Benner (32:30)

That's awesome.

Your dad's mom or your mom's mom?

Jordon (32:33)

My dad's mom.

Scott Benner (32:34)

That's okay.

Okay.

Is your dad the same way, is your dad like

Jordon (32:37)

Sorry.

My dad's dad.

Scott Benner (32:38)

Your dad's dad?

Sorry.

Yeah.

And that was me.

I led you wrong there.

Scott Benner (32:41)

Is your father similar, or did he go different path from your grandfather?

Jordon (32:45)

Actually, he took a a worse path.

So my dad my dad has early onset Alzheimer's.

Oh, god.

Sorry.

Been, yeah.

Jordon (32:54)

Thank you.

That's he was diagnosed about three years ago, but the whole process has been probably about a decade long.

Scott Benner (33:01)

No kidding.

How old is he now?

Jordon (33:03)

He is 50 about to turn 57.

Scott Benner (33:08)

Oh, that's harsh.

I'm sorry.

Jordon (33:10)

Yeah.

But, no, my dad was not anymore

Scott Benner (33:14)

Learned in his time?

Jordon (33:15)

No.

Correct.

Scott Benner (33:18)

Jordan's like, listen.

We're on our own.

Okay?

Jordon (33:20)

Yeah.

I can't You know, going back to it, that's another reason I I, like, I have tried to take care of stuff myself is because I'm just like, I I can't.

Scott Benner (33:31)

Do you think that's because don't you think everybody feels like that about their parents to some degree?

Jordon (33:36)

Probably.

But I also know a lot of people whose parents like, I I mean, I listened to you talking about how you still you know, if if Arden needs help, you know, you're there to help.

Not that you're there all the time or your son, But it's just I don't know.

I guess everyone's a little different.

Scott Benner (33:54)

But, you know, they don't see it that way.

Right?

That you listen to me and you think if my father had half on the ball, this guy does, I'd be better off.

But my kids think I'm an idiot too.

Sure.

Jordon (34:05)

Yeah.

Yeah.

Yeah.

But that's that's because they grew up with you.

That way, they're not used to it being the I I wonder if they would feel differently now that they've, like, been to college, been out of house.

Jordon (34:15)

I mean, I'm sure they

Scott Benner (34:17)

feel surprised.

Yeah.

Well, listen.

I'm sure at some point, but I think it's part of the the natural, like, separation process.

The at some point, you have to feel like because I'm gonna go make my way in the world, and I know things.

Scott Benner (34:27)

And if you if you keep thinking, like, well, they're smarter than me.

I'll just sit here.

It's what's it?

Infanalyzing?

Is that the word?

Scott Benner (34:34)

I think it's a natural part of, like, leaving the nest to think that the the nest you're leaving is not as good of a situation as you could create for yourself.

Jordon (34:42)

Sure.

I there is there's some truth to that because I I you know, parents always say, like, I want you to have a better life than I did, and I think that to some extent, that's that's usually the case.

Right?

Scott Benner (34:54)

Like Yeah.

I mean, I tell my kids, good luck creating this life as good as I've created for you.

I don't think have to get out there and work your ass off because I've been working nineteen hours a day my whole life, so good luck.

Jordon (35:04)

Right.

Scott Benner (35:04)

Yeah.

Jordon (35:04)

Yeah.

Yeah.

Yeah.

I that's one thing that actually my mom my mom is super supportive, and, I mean, I've I've learned pretty much everything from her.

Scott Benner (35:16)

That's awesome.

Jordon (35:17)

She definitely supports me in that kind of, like, go out there and and try to try to do better, you know, where you can.

And I I think it's a lot more pertaining to, like, emotions and, like, just well-being.

Not, like, go out there and figure out how your career is gonna blah blah blah, this and that.

Mhmm.

It's generally more like how can you create, like, a fulfilling life for yourself, take care of yourself.

Scott Benner (35:45)

Well, that's

Jordon (35:46)

that's thoughtful.

Scott Benner (35:47)

I bet you her perspective is probably growing significantly since your dad's issues too.

Jordon (35:53)

Absolutely.

Because, I mean, I'll be blunt.

He's not an easy man and never has been to be around.

Scott Benner (36:03)

And now it's harder.

Jordon (36:03)

It's worse now.

Scott Benner (36:06)

Yeah.

Yeah.

Jordon (36:07)

It's funny because my mom's told me some people say that, like, their, you know, their parent or grandparent, whatever, was a nightmare, and then the disease hit, they became so sweet and blah blah blah.

And I'm just like

Scott Benner (36:20)

He doubled down.

For you.

Yeah.

My dad doubled down when he got it.

That's terrible.

Scott Benner (36:26)

Jeez.

That's horrible.

Yeah.

Ugh.

Well, hey.

Scott Benner (36:29)

Are there other autoimmune issues in your family?

Jordon (36:31)

See, I knew this was coming, and I was really excited for

Scott Benner (36:33)

it.

Go ahead.

Jordon (36:35)

My mom's brother has RA and hypothyroidism.

Scott Benner (36:40)

Mhmm.

Jordon (36:41)

And their uncle my mom's uncle passed away from MS.

They had another uncle who had diabetes that was so severe, he lost now this was supposedly type two, but I have some speculation about it.

He lost both feet and died at, like, you know, way too early.

And since my diagnosis, my mom had lunch with a cousin, and her cousin was like, oh, yeah.

I have Crohn's, and my daughter has type one.

Jordon (37:14)

So I was like, oh, okay.

So this goes like

Scott Benner (37:17)

Yeah.

It's a lot.

Have you considered getting the hell out of Maryland?

What's going on?

Jordon (37:20)

Seriously.

Oh, yes.

Absolutely.

Scott Benner (37:22)

Could be the marshes.

There are marshes there

Jordon (37:24)

on here.

Yeah.

Yeah.

Yeah.

The nasty soggy air.

Scott Benner (37:28)

And what is your what's your dad's diagnosis?

Jordon (37:31)

Early onset Alzheimer's.

Scott Benner (37:33)

Just that.

That's it.

Okay.

Jordon (37:35)

Yeah.

So no autoimmune from that side of the family.

A lot of type two, but, of course, everyone these days has type two diabetes.

So

Scott Benner (37:44)

It's just the thing to do.

Do you think you you well, that's in your do you think you know, there are plenty of people who would listen to this and go, I don't know one person has type two diabetes, I think.

Jordon (37:53)

You think?

Yeah.

Yeah.

Yeah.

Yeah.

Jordon (37:54)

I've always been, maybe it's a cultural thing.

My dad is black, and we come from, like, a, I would say, a southern family.

Mhmm.

So, you know, all of those kind of comorbidities, I guess, as they say.

You know, it got the high blood pressure, high cholesterol, all that kind of stuff.

Jordon (38:17)

So type two is I mean, it wouldn't make sense to not have it.

Scott Benner (38:23)

Yeah.

No.

I was talking to a a guy in his, like, late thirties yesterday.

He's of Spanish descent.

He was talking about how much type type two is in his family.

Scott Benner (38:31)

Yeah.

Yeah.

It's Yeah.

It's something I I did a little, just a a quick Google here.

Alzheimer's not classified as an autoimmune disease.

Scott Benner (38:40)

It is generally considered a neurodegenerative disease marked by brain changes such as beta amyloid plaques and Mhmm.

Tau tangles.

What is true is that immune systems seem to play a role in Alzheimer's.

The National Institute on Aging notes that inflammation and immune system problems have been linked to development of Alzheimer's and related dementias, and newer research is looking closely at immune dysfunction in the disease.

So, you know, there's a connection just you know, Alzheimer's isn't considered an autoimmune issue.

Jordon (39:13)

Right.

I mean, I think you you mentioned it a lot, systemic inflammation.

Scott Benner (39:18)

Just the bad news.

Jordon (39:19)

I mean, it may not something may not be autoimmune in nature, but you know?

Scott Benner (39:25)

I can't take obviously, you can't take Advil every day, okay, as an example.

But there are days if I take it, I just do feel better a little bit.

And Sure.

Like, I and I I just do wonder if I don't have, like, inflammation related issues that I maybe aren't autoimmune specifically, but you take that with me and my wife having, you know, thyroid and you mix it together and you get Arden.

You know?

Scott Benner (39:50)

Yeah.

Jordon (39:50)

There you go.

She was doomed from a

Scott Benner (39:52)

Doomed from the start.

Jordon (39:54)

Doomed from the start.

That's what I think sometimes.

Like, did you two not, like, look at each other's breeding papers before

Scott Benner (40:01)

you know?

Your mom and your dad?

Jordon (40:02)

Yes.

I'll tell

Scott Benner (40:03)

you right now.

If they were puppies, no one would have put them together.

Jordon (40:07)

Seriously.

Seriously.

But I I think a lot of that has also come to light later.

You know, my uncle is twelve years younger than my mom.

So I think I don't remember him having those issues when I was younger.

Jordon (40:21)

Maybe he did.

Scott Benner (40:22)

Mhmm.

Jordon (40:23)

All but I know that it's kicking his ass now.

Uh-huh.

Like

Scott Benner (40:27)

Yeah.

I'm sorry.

It's a lot of health issues.

It's it it overwhelms a overwhelms a family and a life.

You know?

Jordon (40:34)

Yeah.

But, you know, he's if you saw my uncle, this guy's, like, the healthiest looking person, positive.

He's a gym teacher.

Scott Benner (40:42)

Yeah.

Jordon (40:42)

You know?

Scott Benner (40:43)

Do you think about that?

Do you think about maybe I'll just put a stop to it and not have kids?

Jordon (40:47)

Oh, yeah.

Scott Benner (40:48)

You do think about

Jordon (40:49)

I have no plans to have kids because I've just well, like, not just the diabetes, but, like, mental health, all of it.

Scott Benner (41:00)

What about the mental health part?

Jordon (41:02)

I don't wanna have to have my own children that see me in that state or I mean, my my dad's parents are alive.

Scott Benner (41:12)

Mhmm.

Wait.

What about your mental health?

Don't I understand?

Jordon (41:16)

Oh, mental health, sorry, just meaning, like, the Alzheimer's and stuff

Scott Benner (41:20)

like kind of stuff.

Okay.

Jordon (41:21)

Like, that stuff does it does seem to run-in the family.

He's the first, I think, with early onset.

You know?

Everyone else has been old.

Scott Benner (41:30)

This is also something you're worried about for yourself then?

Jordon (41:33)

Yeah.

Not like I'm not going crazy about it.

Scott Benner (41:36)

Good.

Jordon (41:38)

I you know, you take care of yourself.

You do what you can.

You know, there's a lot of information out there.

See, I've changed my tune now.

I'm like, let's let's not play around.

The Honeymoon Phase and Insulin Adjustments

Scott Benner (41:49)

Two years later, Jordan's a different person.

Yeah.

You you wake up five hours late.

You're calling 911.

You're like, something's wrong with me.

Scott Benner (41:56)

Come yeah.

Get over here right now.

Jordon (41:58)

I need a helicopter.

Yeah.

Scott Benner (42:00)

Matter of fact, out of here.

Jordon (42:03)

Yeah.

Yeah.

So I I have kind of taken some of the lifestyle changes to heart that, you know, may lead to me a healthier life in preventing those issues.

But but to, what you were saying about kids, I don't I wouldn't want them to have to take care of me.

I wouldn't and I was saying, like, my dad's parents are alive, and it is really tough for them.

Jordon (42:28)

Like, I I that would kinda break my heart too.

And Yeah.

And on top of that, I don't I haven't even we haven't gotten there yet, but I haven't progressed to full on type one yet.

You know?

I'm honeymooning.

Scott Benner (42:41)

Oh, you are still in

Jordon (42:42)

the honeymoon.

So, I can only imagine, like, having to deal with myself and someone else's diabetes.

Scott Benner (42:49)

Jordan, you're having a very, very slow onset then.

Jordon (42:52)

I am.

Scott Benner (42:53)

Yeah.

How long has it been going?

A couple years, almost a year and a half?

Jordon (42:57)

So I was diagnosed in June, so it's been ten months.

Scott Benner (43:00)

I would also Just about.

I would also argue the six months prior to that.

Oh, yeah.

Yeah.

Yeah.

Scott Benner (43:05)

Yeah.

Basically.

Six months prior to that.

Yeah.

Some something's going on there too, obviously.

Scott Benner (43:08)

Oh, so what's it look like?

Are you are you using a pump?

Are you MDI?

What are you doing?

Jordon (43:14)

I just do one shot.

They started me on basal immediately.

It was, like, seven units.

Scott Benner (43:21)

Oh, okay.

Jordon (43:22)

And so I went from I was testing, the like, all the time initially, and I was I went from, like, 3 hundreds to 100 to in the nineties, like, in two days.

Scott Benner (43:41)

Mhmm.

Just with seven units of basil a day?

Jordon (43:44)

Yeah.

Scott Benner (43:45)

Okay.

Jordon (43:45)

So that it'd be and I was still confused about, like, type one, type two, but, like, from what I understand, that's it's it's a characteristic of maybe even though it went on for a long time, we kinda caught it early.

I have some some remaining beta cell function there.

Scott Benner (44:04)

You have you have lot Lotta probably.

Is that what they're calling it?

Jordon (44:07)

Lot.

Yeah.

Scott Benner (44:08)

Yeah.

Jordon (44:08)

And I I asked my endo about that, and she was like, I don't care what you call it.

Just just you know?

Scott Benner (44:15)

You have type one on a train that's taken forever to get in the station.

And yeah.

Yeah.

Did they mention GLP, like, low level GLP to help?

Jordon (44:24)

She was convinced that I would disappear if I started on a GLP and lost any weight, even if it was a microdose, I guess.

Scott Benner (44:34)

Okay.

Jordon (44:35)

I don't know.

But I I asked about, god, can I say it correctly, teplizumab or whatever it is?

Scott Benner (44:42)

Yeah.

Yeah.

Yeah.

TZL.

Jordon (44:43)

The yeah.

Mhmm.

The the drugs that prolong the honeymoon, and she was just I don't know.

Maybe it was the the a one c of fourteen point five that she was just kinda like, I think you're maybe a little a little too far gone.

Scott Benner (44:57)

She's like, the train is going slow, but it's pretty far out of the station.

Jordon (45:01)

It's here.

Yeah.

Yeah.

Gotcha.

So she said just continue with that.

Jordon (45:05)

And and so I was actually having a lot of lows because I exercise like crazy as well.

Yeah.

So I was just always always low.

And back in February, couple months wait.

Yeah.

Jordon (45:22)

Basically, last month, I was like, I can't keep doing this.

I'm at, like I just had food.

I shouldn't be at 55 and, you know, arrow down.

Scott Benner (45:32)

So on days when you're exercising hard, even though seven units of basal are too much?

Jordon (45:37)

Yes.

Scott Benner (45:38)

Yeah.

It's interesting.

Jordon (45:42)

Yeah.

It's confusing to me.

Scott Benner (45:44)

I would be so I have to tell you, not a doctor, not advice.

I would be super interested to see what micro dosing GLPs did for you.

Yeah.

2.5 is the smallest pen I'm talking about, way less than that.

And, like Yeah.

Scott Benner (45:55)

Just to see what what like, if if there's a if there's a tipping point in there where it could affect your blood sugar without affecting your hunger.

Jordon (46:03)

I would like to see that too because I I don't know.

It just doesn't I tried to stop taking insulin, which I I know you're not supposed to do, but I was really desperate here because I was I was getting scared.

Scott Benner (46:13)

Because of how low you were getting?

Jordon (46:15)

Yeah.

Like, it was every day at the same time, 55 double arrow down.

Like and I didn't believe it.

I was like, I need to finger prick because

Scott Benner (46:24)

And sure enough.

Jordon (46:25)

This is probably wrong, and I was in the forties every time.

Scott Benner (46:29)

Yeah.

You probably have the basal running, and all of a sudden, your pancreas is like, hey.

I can help now.

Jordon (46:35)

Yeah.

I'm here too.

I'm still going.

Yeah.

Yeah.

Jordon (46:37)

Which also I my c peptide rebounded after three months.

Scott Benner (46:43)

Interesting.

Jordon (46:43)

It went from being low to being normal.

They they said that's yeah.

You're honeymooning, and I was like, okay.

So I stopped taking the insulin.

Yeah.

Jordon (46:54)

It was February because I went to a Super Bowl party, and I had fun eating, let's just say.

And I I left the party at, like, my blood sugar was at, like, two seventy five.

And I was like, oh, yeah.

That's that's pretty high, but, you know, the basal always kicks in.

And whatever beta cell function I have left kicks in usually and brings me back down.

Jordon (47:20)

And then I woke up the next morning, and I was still at two seventy five.

Scott Benner (47:24)

Oh, and that did not work.

You didn't get that one.

Maybe it was because the Super Bowl sucked that your body didn't wanna help.

Jordon (47:30)

Right.

It was just so upset.

Yeah.

Yeah.

But, yeah, I was like, okay.

Scott Benner (47:35)

Not like that beautiful Super Bowl that my Eagles put on the year before.

Jordon (47:38)

That's right.

Scott Benner (47:40)

Where they trounced the Chiefs and made everybody in the country happy except for Kansas City.

Jordon (47:44)

See, I am not an Eagles fan, but I'm with you on that one.

Scott Benner (47:48)

It's okay.

Jordon (47:48)

I enjoyed that game.

Scott Benner (47:49)

I understand how you feel.

Jordon (47:50)

Was a great game.

Scott Benner (47:51)

I understand how you people feel down there.

I know what's going on.

Don't worry.

Jordon (47:54)

Hate the Chiefs even more.

So

Scott Benner (47:55)

Everyone does.

And it's it's Yeah.

It's because of what's his name.

Jordon (48:00)

Oh, yeah.

What's his name is just yeah.

Yeah.

We gotta get him off, all the commercials.

Scott Benner (48:04)

I've never seen such a good quarterback get hurt and everybody go, okay.

I'm alright with it.

Yeah.

Yeah.

It It's his time.

Scott Benner (48:10)

He's he's done he's done a thing.

He's he's made people not like him somehow.

It's interesting.

Jordon (48:15)

Yeah.

Yeah.

For sure.

Scott Benner (48:16)

Yeah.

Talented guy.

But nevertheless yeah.

Yeah.

It's the crybaby stuff, don't you think?

Jordon (48:22)

It is.

That's and people don't wanna hear that after you've gotten everything you could ask.

Scott Benner (48:28)

One yeah.

One did did you see in those, the betting scandals, especially around basketball?

They're talking to the referees that have been involved in it, And a lot of them are saying, like, look.

Nobody directly comes and tells you we want the Lakers to win, for example.

You know, we want we want we want this team to win.

Scott Benner (48:46)

We want that team to win.

But he's he's like, you understand what's good for the league, and you make those calls, and then the league assigns you to more games.

He's like, so nobody ever asks, but it kinda gets done like that.

Yeah.

And I'm telling you that that, the year before, like, like, three Super Bowls ago, I think, one, three Super Bowls ago, you watch that AFC championship game.

Scott Benner (49:11)

It feels like the ref is like, I am gonna throw this flag until the Chiefs win.

And Yeah.

Like, and it was really does.

It really does.

I mean, from an outside perspective, I I not I I had no skin in the game.

Scott Benner (49:22)

Like, I'm just watching it.

I'm like, man, it just feels like that guy's like, look.

If I gotta throw this flag on the ground one more time to make sure the Chiefs go to the Super Bowl, then that's what I'm gonna do.

Damn it.

Jordon (49:31)

I'm doing it.

Scott Benner (49:31)

Because Taylor Swift's boyfriend has gotta be successful.

And That's right.

Jordon (49:35)

Yeah.

Maybe everyone's just like, hey.

My daughters are really big Taylor Swift fans.

Scott Benner (49:41)

Yeah.

Yeah.

I would love to see him.

You know, right at the Chiefs making the Super Bowl, Taylor Swift will come.

I'll bring my daughter.

Scott Benner (49:46)

It'll be a whole and I don't think it's maybe conscious or not.

Like, I'm just saying, trust no one.

And

Jordon (49:52)

No.

Yeah.

I'm a huge conspiracy theorist, Scott.

Scott Benner (49:54)

I'm not at all.

I don't think that's a conspiracy.

I don't think that's a conspiracy to think that, like

Jordon (50:00)

It's just right in front of our faces.

Scott Benner (50:01)

So feel like you understand what is expected.

You have sway over it.

You make sway.

People then like you.

You get more things.

Scott Benner (50:10)

Like, I you know, it just feels like feels like that's kinda how the brain works.

There's a a pleasure center you're you're feeding a little bit.

Do you wear CGM?

Jordon (50:19)

I do.

So that's another thing.

Praise Kaiser or praise this doctor.

You know how they use the language that the medical language that no one understands, and it they don't mean anything by it, but everyone was like, Humalog, Basal, CG, and I'm just like, yeah.

Scott Benner (50:34)

Right.

Jordon (50:35)

Whatever.

Fine.

And so after finger sticking, like, 50 times a day for a week, I talked to my this was when the, the GAD results came back, and she was like, yeah.

It looks like you have type one.

And she was like, have you gotten the CGM yet?

Jordon (50:53)

And I was like, you mean the finger stick thing?

Like, yeah.

I have that.

I'm testing.

And she was like, no.

Jordon (50:59)

A CGM, it, you know, goes on your arm and stay and I was like, oh, that that might be nice to have.

So I don't know.

Yeah.

This was weird because I got diagnosed over the phone, went to the pharmacy, picked up my you know, it wasn't a whole thing.

So a lot got lost in a lot of information got lost on its way to me, I guess.

Jordon (51:21)

And, but, she got me on the g seven, the Dexcom g seven right away.

Podcast Impact and Final Thoughts

Scott Benner (51:28)

Because you brought this up, may I just plug the website for a second?

Juiceboxpodcast.com/interactive-dd.

It's also in the menu.

You can just click on the menu at the top right.

It's interactive defining diabetes.

Scott Benner (51:42)

It's, like, all the episodes from defining diabetes, but, like, broken down, like, just very simply.

Jordon (51:49)

Uh-huh.

Okay.

Scott Benner (51:50)

English, Spanish, French, German, Hindi, a bunch of different languages if you wanna go look at it that way.

So, basically, like, I'm looking top left a one c, your ninety day big picture report card, though it doesn't show the daily roller coaster of highs and lows.

You click on it.

It says a blood test measuring average blood glucose levels over the past two to three months via glycated hemoglobin.

And then you can if you want to click off of it or click listen to episode, it'll take you to the defining diabetes episode that defines a one c.

Jordon (52:21)

And Oh, crap.

Scott Benner (52:22)

Uh-huh.

And at the top, there's a little button that says challenge.

And if you click on challenge and then you hit start, it starts asking you questions.

An early morning increase in blood glucose caused by natural counterregulatory hormones.

Dawn phenomenon, algorithm, c peptide.

Scott Benner (52:37)

I say Dawn phenomenon.

Yes.

And then it goes to next one, and there's this little bar that runs down.

I think it takes, like, ten seconds.

It gives you time to answer to get to the next one.

Scott Benner (52:44)

So you can play, like, a quiz to learn the the definitions around diabetes.

Jordon (52:49)

Wow.

Scott, you're a digital creator if I've ever seen one.

Scott Benner (52:52)

I am on it.

You should see.

I just basically I just basically sit here now recording the podcast and working on the website, trying to turn the website into this great thing, which I think it is.

But now I'm about to start starting now to try to get the word out about it, and I'm gonna start with you.

So interactive dash d d if you wanna take the defining diabetes challenge or check out some terms that you might not know the definitions to.

Scott Benner (53:16)

Thanks.

Jordon (53:16)

That's perfect.

Scott Benner (53:17)

Look at me.

Jordon (53:18)

Yeah.

I I I used my own craziness to kinda learn everything I could.

Scott Benner (53:25)

You know, I tell this story constantly, but, like, the first time somebody on the podcast said, like, I don't I somebody said basil to me, I didn't know what the hell that was.

Like, you know, like, I didn't even know I was using basil insulin, but I was apparently.

And and Yeah.

If you don't have context for these words, it all be it's more difficult.

Jordon (53:42)

So I kept hearing the word bolus, and I was like, you mean, like, a bolus of food that, like, you swab,

Scott Benner (53:49)

Bolus you is my bolus dirty?

No.

No.

No, honey.

It's in the sink.

Scott Benner (53:56)

We already cleaned it.

Yeah.

Yeah.

Yeah.

Yeah.

Scott Benner (53:58)

I you people run out all the time.

I'm hungry all the time.

It's like I got diabetes.

I'm hungry all the time.

Hungry all the time.

Scott Benner (54:03)

Go figure out what amylin is.

There you go.

Like, they now now you have more context.

You can build bigger stories for yourself and and maybe change your pathway and understanding and get yourself to something better.

I don't wanna sound like a

Jordon (54:16)

That said, I had, no clue that, I think you and Jenny were talking about it that, like, the diabetes effect on your pancreas also extends to, like, hunger hormones and signaling.

And was like, oh my god.

That makes

Scott Benner (54:29)

so sense.

Yeah.

Because you are a you're a hungry little monkey sometimes, aren't you?

Jordon (54:34)

Oh, yeah, man.

I'm I'm thinking about food all day long.

My god.

Let's call

Scott Benner (54:39)

your episode hungry little monkey.

Can we do that?

No.

I don't I don't know.

We'll figure it out.

Scott Benner (54:43)

I I what the other one was good too.

What was the other title I said?

Jordon (54:48)

Oh, shoot.

Something about lungs.

Scott Benner (54:51)

Oh, no.

That's because I know your last name and no one else knows it.

And we're not gonna share we we're not gonna share your last name, so I can't use it.

Because it what do it's it's on it literally is without context.

So I'll figure something

Jordon (55:05)

out.

Yeah.

Scott Benner (55:05)

Don't you worry.

Yeah.

Everything's gonna be fun.

Jordon (55:07)

Yeah.

Yeah.

Yeah.

I gotta find some more interesting stuff

Scott Benner (55:11)

to talk about.

What what else what what made you wanna come on the podcast?

Jordon (55:15)

The shock and the very sudden, change in my lifestyle that was forced upon me.

Just kinda I was like, I have to like, I can't be the only one, so I gotta find somebody.

And I I found the podcast because my mom was like, I'm sure you could find a podcast that yeah.

So I looked up type one diabetes, and the first episode I found was the the dirty toilet bowl.

I don't know if you remember that one, but the the guy was, like, 25 and diagnosed around the same age.

Jordon (55:54)

And, like, seemed like he noticed a lot of the same signs.

And I was like, I don't know.

As time has gone on, I have kept, like, putting pieces of the puzzle together, listening to the podcast, and, you know, that's helping me piece things together even more.

So I I really wanted to just kinda come on and and

Scott Benner (56:15)

tell myself.

Glad you did.

And you're talking about

Jordon (56:17)

Yeah.

Scott Benner (56:17)

He had an there was an overgrowth in his toilet bowl because of all the sugar he was dumping.

Yes.

Jordon (56:23)

Yes.

And I actually had a friend see, we have, this mutual friend who has type one, and they've known each other since they were, like, really little.

And I think because she mentioned the black ring in the toilet bowl to me.

I was like, you know, whatever.

I sorry.

Jordon (56:43)

I didn't clean the bathroom.

You know?

Now hindsight, she was like, yeah.

I was actually wondering, like, if someone in the house had diabetes because I know that.

And I was like,

Scott Benner (56:53)

goddamn.

I never heard Yeah.

Jordon (56:58)

But, yeah, just funny stuff like that that I heard when I first started listening to the podcast, and I was like, no way There's someone who had the same thing that I thought was so bizarre happened to them.

Yeah.

Yeah.

Scott Benner (57:13)

It happens to people all the time.

So and and and where else are you gonna hear about that?

No one's gonna tell you about that.

That's not a not that's not a thing you're gonna read in a book or even

Jordon (57:23)

No.

We don't sit around the dinner table talking about our our

Scott Benner (57:26)

Have you all noticed the black ring in the toilet bowl?

Seems like it seems like something's growing in there, doesn't it?

It's something you guys okay?

Everybody alright?

Jordon (57:33)

I was, you know, having doing my own little science experiment.

That's

Scott Benner (57:38)

can I tell you something I was thinking about the other day?

I think this kind of I think it'll dovetail nicely into this.

So while you were talking earlier, I watched a, this is gonna here's a lot of words nobody's gonna care about.

Tacodermis smaradensis.

It's a small Japanese grass lizard with a long tail.

Scott Benner (57:54)

I have a a a I have a colony of them living in a tank over here.

And, one of them was trying to get up on this big leaf, like, running but slipping.

It looked like it was on a treadmill for a while.

It was absolutely absolutely delightful.

This is not why I bring them up.

Scott Benner (58:12)

But I I was looking at them the other day, and there's females in there, and they're gonna start laying eggs pretty soon.

And lizards are pretty simple animals.

Right?

Like, they need calcium.

And for some reason in captivity, they cannot get calcium the way they live in captivity, the way they get it out in the world.

Scott Benner (58:29)

So when you give them food Yeah.

You dust their food with just calcium.

Dust.

Right?

Yeah.

Scott Benner (58:34)

And if you don't do that Yeah.

They don't die right away.

They don't die in a week or a month or, like but their bodies slowly are lacking the nutrients, the building blocks, the necessities to keep them healthy.

And then if the females lay eggs, that uses up most of their calcium stores to create the eggs, and then they'll sometimes pass after that if they don't have enough calcium.

Or they can get bone, like, something called metabolic bone disease.

Scott Benner (59:00)

Like, there's all these things that can happen that will lead to their death, and it's just about calcium.

Removing yourself from the the I can't believe I said it correctly.

Tacidermis smaradens.

I I never can say it out loud, I got it right this time.

Thank you.

Scott Benner (59:15)

We putting them aside, like, there are so many little ingredients inside of you that you need to be healthy.

And you can take some of them away and not die, but it doesn't mean you're optimal.

And, you know, the Right.

Jordon (59:33)

And you might not notice it for a long time.

Scott Benner (59:35)

The lizard doesn't die the first day it doesn't have the calcium.

But the day that it rears its head, it's too late then.

And you seem okay every day between we stopped giving the lizard calcium and it died.

It seems I swear to god, they seem fine right up until they fall over dead.

And I think Yeah.

Scott Benner (59:54)

I don't know.

I was thinking about that the other day, and I don't know that people associate simple things like vitamin d, you know, your insulin.

These are things that are additive to your body that you need to add in in the right amounts to put yourself in an optimal situation.

And I it's hard to think about it that way, but keeping the lizards simplifies it for me.

And and

Jordon (1:00:20)

You understand it better.

Scott Benner (1:00:22)

Just for having watched one of them

Jordon (1:00:24)

Implementing it on a small scale.

Scott Benner (1:00:25)

For watching one of them have lived well with it and healthily, and, you know, I've had animals die too, and you don't know why exactly.

But I don't know.

I just I wish everybody Arden's friend called the other day.

They're on the phone.

She's she's of Indian descent.

Scott Benner (1:00:40)

She's brown person.

She just moved to, like, somewhere really cold, and she started talking about issues on the the the FaceTime talking.

The FaceTime.

Look at me.

Like, a thousand years old.

Scott Benner (1:00:50)

Yeah.

But bring the box on so I can see, I could see the Merv Griffin show.

Jordon (1:00:54)

Bring the box.

Scott Benner (1:00:55)

So I'm talking to her, and she's she's feeling a little run down.

I said, are you taking vitamin d?

And she goes, no.

I'm like, you're a brown person living where there's no sun.

Please take vitamin d.

Scott Benner (1:01:04)

What are you doing?

Jordon (1:01:05)

Your body's not too happy with you.

Scott Benner (1:01:07)

So I said I said, what are you doing?

And so I'm texting her a link.

I'm like, you buy this right now.

Take one every day.

Don't make me come up there and yell at you.

Scott Benner (1:01:14)

There's simple thing you just don't realize until, you know Yeah.

It's too late.

Or, by the way, it's never deficient enough to actually hurt you significantly, but you have a lessening of what your health could look like throughout your entire life.

You know what I mean?

Yeah.

Scott Benner (1:01:32)

And and just for for what?

Mhmm.

Like, eat an egg once in a while.

Have a little bit of red meat.

Have some chicken.

Scott Benner (1:01:38)

Do the thing.

Take a vitamin.

It's Jordan, please.

Are you taking vitamins?

Jordon (1:01:44)

Yeah.

Good.

Scott Benner (1:01:45)

Good job.

Thank you.

I appreciate that.

I appreciate that.

Every day, it's not hard.

Scott Benner (1:01:51)

They're right in front of me.

Right here.

I keep them on my desk.

Jordon (1:01:53)

It's funny.

I actually listened to the supplement episode recently, and, and started being a little more regular with them and taking digestive enzymes and all

Scott Benner (1:02:05)

that stuff.

Better?

Jordon (1:02:07)

Yeah.

Good.

I do.

Yeah.

I was having a not quite sure if I might be having my second of the the autoimmune trifecta flare up now, but I feel like I don't digest food anymore.

Scott Benner (1:02:21)

Well, you do you think it's celiac?

Do you think it's just you having losing some of that functionality from your pancreas with digestion?

Jordon (1:02:28)

Oh, the latter.

Because celiac, from what I understand, is would be a little more obvious after eating

Scott Benner (1:02:36)

Stuff like that.

Jordon (1:02:37)

Gluten in it, and and I don't necessarily have those symptoms.

Care

Scott Benner (1:02:41)

of It's not that difficult.

Look.

Really look.

Listen.

Jordon (1:02:44)

I'm just

Scott Benner (1:02:44)

I'm just taking out my vitamins right now.

I'll put them on my desk so that when you and I are done, I can take them.

I can I tell you the a funny vitamin story?

Because we are we're getting into it now.

Okay.

Jordon (1:02:54)

Yeah.

Do it.

Scott Benner (1:02:55)

So I'm driving I don't know.

I think I was driving home from Georgia when Arden was in school there.

Mhmm.

And, I bring my vitamins with me.

I'm a I'm an I'm a I'm one of those old people who just throws a pill in their pocket.

Scott Benner (1:03:07)

I have no problem with it.

I'm driving home, and I think, oh, I haven't taken my vitamins.

I just ate something.

I'll take my vitamins now.

And I take them, but I must not have drank enough with them and didn't realize it.

Scott Benner (1:03:20)

So

Jordon (1:03:21)

Yeah.

Scott Benner (1:03:21)

It's a half an hour later.

This is such a weird this is one of the weirdest experiences of my life.

I burped, and this powder cloud came out of my mouth.

And I thought

Jordon (1:03:36)

I've had the metamucive burst.

Scott Benner (1:03:37)

Thought, oh my god.

I'm gonna die.

This is it.

Like, right like, right here.

Oh, like, maybe I should pull over so I don't crash my car.

Scott Benner (1:03:44)

When when obvious imminent death happens to me next.

And I panicked for a second, and I was like, what the hell just happened?

And then it took me a minute, and I put two and two together, and I'm like, I don't think I drank enough with the vitamin if the capsule opened up in my way.

I don't know where.

Like, I'm not good enough with, like, with how the body is designed to actually, like

Jordon (1:04:07)

Yeah.

Like, in your esophagus?

Scott Benner (1:04:09)

Sub.

Right?

Like, that it's insane.

But I was, like, puff the magic dragon there for a second.

Yes.

Scott Benner (1:04:16)

It's like, oh, look at this.

It's really great.

Nevertheless, drink a lot of water with your with your pills.

That's what I wanted to say.

Jordon (1:04:23)

Yeah.

Good note.

Scott Benner (1:04:24)

Good note.

Good note.

I'm older than you by, like I'm, like, twice as old as you.

So do you like the information from the podcast enough to put up with listening to an old man's podcast, or does it not feel that way to you?

Jordon (1:04:40)

For sure.

I think well, my, my style of, like, communication is a little different, I think, from a lot of the younger people I'm around.

So I I feel like I I do kinda click with, like, your sense of humor and stuff a little bit more, so I I don't have a problem listening to it.

And I like the messages.

You know, every now and then I I'm like, oh, Scott.

Scott Benner (1:05:08)

You know?

Here he is.

Jordon (1:05:10)

But but, no, I I really enjoy it.

I think the way that you because the way people talk online, it's like, oh, this guy telling everyone to, you know, just take a bunch of insulin and blah blah blah, but you've repeated, you know, over and over about how like, that's not what you're telling me.

Scott Benner (1:05:29)

Right.

Jordon (1:05:30)

Do you encourage people not to just take your word as law?

And, that's that's exactly how I think.

Like, I'm not just going to settle for for one opinion, but I'll absolutely take good sounding advice and and try to look for

Scott Benner (1:05:48)

on me online?

I don't look.

Is that happening still?

Jordon (1:05:51)

Actually, you know what?

What I saw might have been from a couple

Scott Benner (1:05:54)

years ago.

There was a couple of years ago where, like, that I think people, like, misunderstood the idea of, like, that bold with insulin message.

And, like

Jordon (1:06:03)

Yeah.

It was seemed like it was around, like, heavy coke.

Scott Benner (1:06:06)

Yeah.

But, yeah, extra crazy during COVID.

Jordon (1:06:08)

Yeah.

Scott Benner (1:06:09)

Yeah.

Yeah.

Jordon (1:06:10)

Yeah.

Well, I mean

Scott Benner (1:06:12)

yeah.

Well, no.

Listen.

A lot of listen.

You don't realize how much of the crazy gets focused on, like, day to day life stuff.

Scott Benner (1:06:17)

And then when you take away the day to day life stuff, they got extra crazy, you gotta point it somewhere.

Jordon (1:06:22)

Yeah.

Yeah.

Well, and what do they call those people that are supposedly so pissed off with you, but they probably listen to every single episode and they Yeah.

Scott Benner (1:06:30)

I'll take it.

Jordon (1:06:31)

Yeah.

Scott Benner (1:06:31)

I don't care.

I don't I Yeah.

Possibly mean couldn't mean less to me.

I I I need the downloads.

We're good.

Jordon (1:06:37)

Alright.

Scott Benner (1:06:37)

It's a pretty it's a pretty simple system.

You know what I mean?

You listen.

I sell ads.

I get to keep making my podcast.

Scott Benner (1:06:44)

So Yeah.

Yeah.

Keep listening.

Thank you.

Jordon (1:06:47)

Whole life.

Scott Benner (1:06:50)

Have you ever seen the lion king?

Jordon (1:06:52)

Oh my god.

Scott Benner (1:06:53)

Do know Arden's never seen the lion king?

Jordon (1:06:55)

Yeah.

No way.

What is

Scott Benner (1:06:56)

how old

Jordon (1:06:56)

are you?

Scott Benner (1:06:57)

She'll be 22 in a couple months.

Jordon (1:06:59)

Oh my god.

Yeah.

Scott Benner (1:06:59)

She's try we try so hard to get her she's like, I don't care.

I'm like, okay.

So she really

Jordon (1:07:06)

I mean, she'll feel differently after she fight.

It's inevitable.

It's inevitable.

Scott Benner (1:07:10)

I don't think so.

Jordon (1:07:12)

She'll be like, what's wrong with

Scott Benner (1:07:13)

She's very stubborn.

Jordon (1:07:14)

This.

Yeah.

Scott Benner (1:07:16)

Very, very stubborn.

Jordon (1:07:18)

I love hearing the way that you guys you guys talk to each other.

It's hilarious.

Scott Benner (1:07:22)

I wish she'd come on the podcast more.

She's busy.

Jordon (1:07:25)

I was like

Scott Benner (1:07:26)

Going to college.

Jordon (1:07:26)

I was surprised to hear it how she spoke about diabetes in the podcast, but I understand it, and I think it's really funny.

Scott Benner (1:07:33)

Yeah.

She really is, she's got a different way of thinking about it.

That's for sure.

It's her own way.

So I I think it's a good I think it's a good lesson, though, to hear that, you know, whether you're an adult or a person who's, you know, taking care of a child with diabetes, your expectation of how people are gonna deal with things or think about them or even feel about them, your expectation has probably very little to do with how they're actually going to respond.

Scott Benner (1:07:58)

So

Jordon (1:07:58)

Oh, for sure.

Yeah.

Yeah.

Because I thought my one close friend with type one when I was diagnosed was like, oh my god.

I'm so excited to have, you know, someone else.

But then but I really like talking about it, honestly.

Jordon (1:08:14)

Mhmm.

And maybe that's because I'm so new, and and she's been in it for a decade.

But it it's just I I'm not met with the same energy, you know

Scott Benner (1:08:23)

She don't

Jordon (1:08:23)

about it and Yeah.

She doesn't care.

Yeah.

And, and that's fine.

Scott Benner (1:08:29)

Yeah.

No.

I just think it's I think it's valuable because I think a lot of times either people can judge themselves against others.

Like, I guess this is how I should feel about it or this is how I should think about it.

Or parents, I think, put their feelings about it onto their kids.

Scott Benner (1:08:42)

They're like, well, this is how they're gonna deal with it or I know they're gonna grow up fine.

Like, you you don't know how anybody's gonna grow up with Like, this is not a Right.

This is not a preplanned thing.

Just because it's the way you handle it doesn't mean it's the way they're gonna handle it.

You might be better or worse at it than they are or will be, and there's not a lot you can do about that.

Scott Benner (1:09:00)

You you know?

Jordon (1:09:00)

No.

Not at all.

Because I mean yeah.

Yeah.

Yeah.

Jordon (1:09:04)

I'm sorry.

I just saw it's a long time.

Scott Benner (1:09:06)

Yeah.

Yeah.

Jordon (1:09:06)

Been talking for a long time.

I'm sorry.

Scott Benner (1:09:08)

No.

Don't be sorry.

What are sorry about?

But we will we will wrap up, though.

This was lovely.

Scott Benner (1:09:13)

I do really appreciate Alright, man.

Hold on one second for me.

You were terrific.

Thank you for doing this.

I really appreciate it.

Jordon (1:09:18)

Thank you, Scott.

Yeah.

Scott Benner (1:09:26)

Today's episode of the Juice Box podcast was sponsored by the new Tandem Mobi system and Control IQ plus technology.

Learn more and get started today at tandemdiabetes.com/juicebox.

Check it out.

This episode was sponsored by Touched by Type one.

I want you to go find them on Facebook, Instagram, and give them a follow, and then head to touchedbytype1.org where you're gonna learn all about their programs and resources for people with type one diabetes.

Scott Benner (1:09:56)

Today's episode of the juice box podcast is sponsored by the Eversense three sixty five.

You can experience the Eversense three sixty five CGM system for as low as $199 for a full year.

Visit eversincecgm.com/juicebox for more details and eligibility.

Okay.

Well, here we are at the end of the episode.

Scott Benner (1:10:19)

You're still with me?

Thank you.

I really do appreciate that.

What else could you do for me?

Why don't you tell a friend about the show or leave a five star review?

Scott Benner (1:10:28)

Maybe you could make sure you're following or subscribe in your podcast app, go to YouTube and follow me, or Instagram, TikTok.

Oh, gosh.

Here's one.

Make sure you're following the podcast in the private Facebook group as well as the public Facebook page.

You don't wanna miss please, do you not know about the private group?

Scott Benner (1:10:48)

You have to join the private group.

As of this recording, it has 74,000 members.

They're active talking about diabetes.

Whatever you need to know, there's a conversation happening in there right now.

And I'm there all the time.

Scott Benner (1:11:01)

Tag me.

I'll say hi.

Check out my algorithm pumping series to help you make sense of automated insulin delivery systems like Omnipod five, Loop, Medtronic seven eighty g, Twist, Tandem Control IQ, and much more.

Each episode will dive into the setup, features, and real world usage tips that can transform your daily type one diabetes management.

We cut through the jargon, share personal experiences, and show you how these algorithms can simplify and streamline your care.

Scott Benner (1:11:32)

If you're curious about automated insulin pumping, go find the algorithm pumping series in the Juice Box podcast.

Easiest way, juiceboxpodcast.com, and go up into the menu.

Click on series, and it'll be right there.

Hey.

What's up, everybody?

Scott Benner (1:11:45)

If you've noticed that the podcast sounds better and you're thinking, like, how does that happen?

What you're hearing is Rob at Wrong Way Recording doing his magic to these files.

So if you want him to do his magic to you, wrongwayrecording.com.

You got a podcast?

You want somebody to edit it?

Scott Benner (1:12:03)

You want Rob.

```
Read More

#1867 Dexcom CEO and CTO on G7, G8, and What’s Changing

Dexcom CEO Jake Leach and CTO Peter Simpson discuss G7 sensor performance, gooseneck fixes, adhesive improvements, customer support, replacement policies, and self-calibrating G8 technology shaping diabetes care at scale forward.

Proudly supported by
Omnipod
Dexcom
Cozy Earth
US MED
Contour Next
Minimed
Tandem
Touched By Type 1
Eversense
ABLEnow
Omnipod
Dexcom
Cozy Earth
US MED
Contour Next
Minimed
Tandem
Touched By Type 1
Eversense
ABLEnow

Key Takeaways

  • Dexcom formed a Customer Advisory Council to gather direct feedback on user experiences and improve communication.
  • The "goosenecking" sensor deployment issue was identified and heavily minimized, with further improvements coming soon.
  • Day one sensor inaccuracies are often caused by the body's natural wound-healing response creating temporary interference.
  • Dexcom is revamping its support systems and replacement policies to reduce user friction while preventing open-market resale fraud.
  • The upcoming Dexcom G8 sensor will feature multi-analyte capabilities and a proprietary self-adjusting algorithm to reduce variability.
FULL EPISODE TRANSCRIPT

Welcome & Introductions

Scott Benner (0:06)

Welcome back, everybody. (0:07) Today, I'm speaking with Jake Leach, president and CEO of Dexcom. (0:12) Jake is joined today by Peter Simpson. He is the executive vice president and chief technology officer. (0:18) Jake, Peter, and I are talking about the goosenecking issue with g seven, different ideas around their support and replacement policies.

Scott Benner (0:26)

We'll talk a bit about accuracy around g seven, a little bit about fifteen days, some adhesive stuff, and I even sneak in a question at the end about the g eight sensor coming up sometime in the future, but probably not as far away as you think. (0:41) While you're listening, please remember that nothing you hear on the juice box podcast should be considered advice medical or otherwise. (0:47) Always consult a physician before making any changes to your health care plan or becoming bold with insulin. (0:53) And if you're new to the podcast, check me out at juiceboxpodcast.com. (0:58) We have content for everybody living with type one diabetes, adults and caregivers alike, juiceboxpodcast.com.

Scott Benner (1:05)

Are you newly diagnosed? (1:06) Check out the bold beginnings series. (1:09) And if you're working on making things better for yourself, check out the diabetes pro tip series. (1:14) There's that and much, much more available at juiceboxpodcast.com. (1:18) Listen on Apple Podcasts, Spotify, or wherever you get audio.

Jake Leach (1:25)

Hey, Scott. (1:26) Jake Leach. (1:27) Pleasure to be here. (1:28) I'm the president and CEO of Dexcom.

Scott Benner (1:30)

Jake, I appreciate you coming back. (1:31) You brought somebody with you today. (1:32) Who is this?

Jake Leach (1:34)

This is Peter Simpson. (1:35) I'll let him introduce himself. (1:36) But one thing I'll tell you is that so Peter and I have been working together at DexCom since the day I joined, and he is one of the the founders of our technology, an amazing person, but also an incredible scientist and engineer. (1:51) And really, a lot of the the advancements you've seen, he he has led almost all of them when it comes to sensor performance.

Scott Benner (1:57)

Oh, wow. (1:58) Well, it's nice to meet you, Peter. (1:59) Also, there's no video here, Peter, so this is just audio. (2:01) You don't have to sit up and smile the whole time if you don't want to.

Peter Simpson (2:06)

Alright. (2:06) Awesome. (2:07) Scott, it's a pleasure, meeting you. (2:09) My name is Peter Simpson. (2:10) I'm the chief technology officer here at DexCom.

Peter Simpson (2:13)

And, as Jake mentioned, I've been here for going on twenty four years. (2:16) So I've been involved in all of the generations of the product and really seeing the evolution both of CGM and but also the impact that all these new technologies have had on people with type one diabetes. (2:27) So it's been amazing to be a part of that evolution and really excited about the future as well.

Scaling & Customer Focus

Scott Benner (2:32)

I I would imagine too you both have a perspective that is almost uncommon in a in a business like this. (2:39) Right? (2:39) I mean, you're from the beginning till now, you guys have seen it all. (2:42) You have kind of an institutional memory of it. (2:44) How does that help you?

Jake Leach (2:46)

It's, you know, it's it's it is really a significant benefit. (2:50) One, because, you know, we we're intimately familiar with all the things that have led to the success of the company and the success of the technology. (3:00) And, you know, it's not like you're trying to learn that while also trying to figure out where the next, you know, place we wanna go is. (3:06) And so I think that is that is a significant benefit. (3:09) And also, you know, when it comes to my role, a big part of what I do is, making sure that we've got the right culture within the company.

Jake Leach (3:17)

And, there's some parts of our culture that have made us successful over time that we wanna keep. (3:23) And then there's parts of the culture you wanna continue to evolve, particularly as we scale. (3:28) It was very different days when we were Peter and I actually used to go down watch them ship the sensors out the door for that day to the users. (3:35) Right? (3:35) And we're talking about hundreds of sensors.

Jake Leach (3:38)

Right? (3:38) And now, you know, we're shipping millions and millions of sensors every week. (3:42) So, you know, it's very different than the things that are important when you scale. (3:45) You need to, you know, have those capabilities. (3:47) And so and and how you look at it is it all continuously improving and all that.

Jake Leach (3:51)

So that that is a a big part of, you know, what I do, and and I lean on the history and the experience. (3:57) And the other thing too is things aren't always easy. (3:59) I mean, we've we've done it's been many decades of very hard work and really persevering through lots of challenges. (4:05) You know, when things happen and don't go as planned, you kind of fall back on the, yeah. (4:10) This we've been here before, and this is how we're gonna fix

Scott Benner (4:12)

What's it like to try to keep that culture of patient first worrying about people, worrying about customers, but then scaling up in the way that you did? (4:22) I don't you'd talk about how many sensors you ship a year now versus back then?

Jake Leach (4:26)

Well, we're well north of a 100,000,000 sensors. (4:29) We have more than three and a half million active users, you know, in in using the sensors today, and that number grows. (4:35) You know, we grew that by 20% last year in terms of the number of people that use Dexcom every day. (4:39) So and we're gonna continue to grow. (4:41) It you know, it's actually it's interesting.

Jake Leach (4:43)

The the patient centered focus for DexCom, because it's so core and it's always been there, we've always been a customer focused company, that's actually the easy part in terms of it. (4:54) I don't you know, you don't have to convince anybody. (4:55) People come here because they are passionate about our mission, and they they want to they know, you know, what we're trying to achieve for our users. (5:03) I think the hard part is making sure we always show up that way. (5:07) Like, the intent is there.

Jake Leach (5:08)

Right? (5:09) The intent is to always be user focused and we, you know, meet the needs of the user. (5:13) But when you scale and grow, you have to start changing the way you do things to better match the scale. (5:19) And there's lots and lots of examples from manufacturing all the way through customer support where we need to keep evolving and improving. (5:26) And we can't, you know, keep doing things that what worked for a smaller number of users doesn't work when you get to the large number of users for lots of different reasons.

Jake Leach (5:33)

So I think that's the part that is harder but very achievable. (5:38) You know, as the new CEO, it's like, is something we're gonna show up. (5:41) We're not adding to people's burden. (5:42) We're relieving the burden of diabetes or at least helping to relieve that. (5:46) We should never be adding to your burden as a user.

The Customer Advisory Council

Scott Benner (5:48)

Can that be a pothole? (5:49) Like, you're you're focused on who you are, you know what you think you're doing, but somehow it gets away from you and you don't realize it right away? (5:55) Or is it a thing you see, like, gotta get to that, but we're so busy? (5:59) When those things ebb and flow, how do you keep your eye on them when they're moving? (6:04) You know what I mean?

Scott Benner (6:04)

Because your intention's the same. (6:06) So yeah.

Jake Leach (6:08)

I I think it's really the feedback mechanisms. (6:10) That's the number one thing, that helps you understand how you're doing is real the appropriate feedback mechanisms. (6:14) And it's actually one of the reasons why we started the customer advisory council is because we have many feedback mechanisms we've developed over time. (6:21) But I was, you know, wanted to hear more from community around, you know, all the things that we're doing well that we can double down on, but also the things that we're not, know, where we're not meeting users' needs, where we're not showing up the way our users want us to. (6:35) And so that we put the advisory council together, which you're a participant in, Scott, which I really appreciate you doing that.

Jake Leach (6:41)

And it was you know, it's a diverse group, and we wanted to hear straight talk, like, are we doing well? (6:46) What are we not? (6:47) So that we improve it. (6:48) And the goal is to make sure that the feedback from that council shows up in the actual experiences our users are having, whether it's product or support or anything around your experience with Dexcom. (6:59) Wanna make sure it's meeting everybody's needs.

Jake Leach (7:02)

You gotta have those mechanisms.

Scott Benner (7:03)

Well, I can say for sure that you wanted to hear the feedback because I didn't just bring my own. (7:07) I brought feedback from the audience, which was pretty extensive, and I was invited back to the second meeting. (7:12) So I figured you actually wanted to hear about it.

Jake Leach (7:15)

It's working.

Scott Benner (7:16)

So so that's what we're here to talk about a little bit today. (7:18) Right? (7:18) You guys are putting out a report based on these meetings. (7:21) Can you explain to people what all this is and and what did it turn up?

Jake Leach (7:26)

Yeah. (7:26) Hey, Peter. (7:27) Do you wanna take do you wanna take that one?

Peter Simpson (7:28)

Yeah. (7:29) You know, we've had two of these meetings so far. (7:31) First one is to make sure that we were listening, and then the second one was where we kinda played back what we were hearing and gave a little bit of information about how we were, responding to some of those commentary. (7:42) We're about to publish this, report out that basically captures that and and talks about some of the commitments that we're making as a company to our customers about the, product performance, the transparency, the communication, and, you know, even things like our, replacement policy and and and such. (8:01) Mhmm.

Peter Simpson (8:02)

You know, that I think it's very important for us to listen to our customers, but also to know that they they are listened to. (8:08) And I think that this is just a piece of that that we can communicate out to to make sure that they know that we are listening to them and really want their feedback.

Addressing Goosenecking

Scott Benner (8:17)

Yeah. (8:17) How can you kind of close the time between when the customer realizes something's going on, but you don't realize it? (8:24) And then you have to react and, I I would imagine, figure out what to do and move forward, and there's no communication in that time, which I don't even know what you would be communicating. (8:32) I use the like, the goosenecking is a great example. (8:34) Right?

Scott Benner (8:35)

Like, think Arden was using g seven, like, maybe week one. (8:39) And one of our first sensors, it happened to. (8:43) And I don't know. (8:43) I just I said, call it in. (8:45) Put on the next one.

Scott Benner (8:46)

I didn't even think twice about it, really. (8:48) I just and then suddenly, you hear other people talking about online. (8:51) But how long does it take you to hear rumblings? (8:53) Like, and what would you say to people who would say, well, why is that not something you already knew was going to happen? (8:58) How does something in a manufacturing supply chain like, how does that happen?

Scott Benner (9:02)

Bring people into that idea.

Jake Leach (9:04)

So what I would say, Scott, first of all, is for that particular deployment issue, we saw it we see you know, because our devices are connected and we constantly monitor feedback from the performance, we actually saw it start increasing early in '25. (9:20) So beginning of last year, we started seeing it increasing, and we saw that signal. (9:24) What we didn't immediately understand is what was causing it. (9:27) So we jumped on it, and the the Tiger team has put together. (9:31) And specifically, I'll let Peter describe a little bit about what we found there.

Jake Leach (9:35)

But that was an example though of something that we monitor. (9:38) But what we've also continued to do is that experience taught us that there's other aspects of the product that we can be monitoring in real time in the field. (9:49) And so we've continued to enhance our analytics capabilities so that with all of if you think about data technologies, artificial intelligence ability to spot patterns that maybe we don't immediately spot as a data scientist, that is some of the technology we're trying to apply to be able to monitor performance because, you know, we have so many users. (10:10) We can see when something is going out of out of range and then we can jump on it. (10:16) But that one sensor deployment issue challenge that we had, happy the team jumped on it, happy that, you know, we've corrected it, moving forward, but that was a hard one.

Jake Leach (10:25)

Peter, do wanna describe a little bit about that?

Peter Simpson (10:27)

Yeah. (10:28) So, what you're referring to is is I think you've called it gooseneck. (10:32) This is where our sensor during the deployment process, it brings the sensor and the needle down to under the skin and then bring retracts that needle, leaving the sensor behind. (10:42) What happens in those cases is the sensor gets pulled back with the needle, and then it's no longer in the body. (10:48) So you essentially have an out of box failure or failure for the sensor to connect or to to sense the glucose.

Peter Simpson (10:55)

Now, our algorithms are able to detect it, so it's not a safety concern, but it is a usability concern. (11:01) It's a very it's a serious one. (11:02) You're expecting this product to work, and that's your expectation, and we need to live up to that expectation. (11:06) So when we see those failures, even if it's a small amount, we take them very seriously. (11:10) When we detected into the field, it was very early on, and we we put together what we call tiger teams.

Peter Simpson (11:15)

And these are groups where we take them off of their projects. (11:18) They're dedicated to figuring this thing out. (11:19) They're meeting on a day, sometimes twice a day basis to to understand what's going on in the manufacturing floor. (11:25) Is there any changes that were made that could cause this to spike up? (11:29) And, over time, we did figure out what was causing it.

Peter Simpson (11:32)

And, you know, a lot of it, similar to other issues that we've experienced in the past is when you're scaling, you get more variability in your process. (11:40) And when you identify that variability, it's pretty straightforward or or it let me not say easy, but you can you can fix it once you've identified where it's coming from. (11:48) And that's what happened in our in this case is the Tiger team was able to figure out what the root cause was and gotten it back down to a very low level. (11:56) We still have some improvement to do, and we've got technology that's gonna come out later this year that's gonna make it even even to, you know, to the best level that we've ever had in in g seven. (12:05) And so while these teams work really aggressively, you know, we have to find we have to find the issues quickly, and we have to respond to them quickly.

Peter Simpson (12:12)

And then the most important thing is to get those improvements out into the field so that the customers are getting the best product every time with every sensor that we're making. (12:21) You know, I think what what Jake mentioned and through this process, we've learned a lot as a company in terms of being just really on top of everything that's going on in the field. (12:30) And Jake mentioned some of the improvements that we're implementing where we're doing, you know, real time monitoring on not just that one, but dozens of other attributes that we're we're monitoring in real time. (12:41) And as soon as we see something that's that's out of just slightly off, we'll we'll react. (12:45) We'll get a team that's on it and and really jump on these problems before they hit the field.

Peter Simpson (12:49)

So I think that's what we're we're continuously improving, and we're gonna be working harder and harder and and doing more of that going forward to make sure that every product is meeting the customer expectations because that that's what's required.

Scott Benner (13:00)

A couple of follow ups. (13:01) So what you're saying is it's only really a problem if you don't learn something from it. (13:05) And so this it showed you a way that you could actually track other things as well. (13:09) So, yes, it was a problem, but you're gonna get something out of it.

Jake Leach (13:12)

Yeah. (13:12) Absolutely.

Scott Benner (13:13)

And I wanna tell you and, and Peter, if you have any kind of time in the future, I saw the explanation of how the goosenecking happens, I would sit down and geek out for an hour talking to you about what you figured out and what was happening. (13:25) I find it really fascinating. (13:26) And I don't know if everybody would, but, you know, in that council meeting when you guys came back in that second in that second meeting and said, oh, here's the answer to how that happened. (13:36) I thought that was fascinating. (13:37) I think the other thing that was fascinating was a description of how the interstitial fluid and the wire works.

Scott Benner (13:42)

If you want, I'll do a I'll do a retrospective series with you about that. (13:46) I'd be so interested to talk about that, but I don't wanna press you. (13:49) So okay. (13:50) So you guys figured that out. (13:51) Still improvements made.

Scott Benner (13:53)

Does that mean some people still might see this happen?

Jake Leach (13:57)

Yeah. (13:57) I think, you know, one of the things I loved about this project, you know, while it was challenging and we were it was we're trying to solve this issue, it led to new innovations that are gonna drive the improvements even farther. (14:09) So we're well back to kind of historic levels for this failure mode, which is very, very low. (14:14) But there's even more technology teams working on to drive it even so even further improvement beyond where we've historically been. (14:22) So I think that's one of the things that's exciting about anytime you you learn something, new ways to prove the product and apply it.

Jake Leach (14:28)

And so, you know, it does happen very rarely still, but we we wanna try and drive as close to zero as possible.

Customer Support & Replacements

Scott Benner (14:33)

Let's move on to, like, support and replacement stuff. (14:37) Because I know you have a bunch and I have a couple of questions here. (14:39) I don't wanna keep you guys too long. (14:41) What's changing about how this is gonna work? (14:44) So break it up into two pieces for me.

Scott Benner (14:46)

Is support changing, improving, being different going forward from stuff you've learned from this council? (14:52) And what about how you're gonna replace devices when they when they fail?

Jake Leach (14:56)

Sure. (14:56) So a couple things I'd I'd add there is that, yes, our support teams are continuing to evolve. (15:02) One of the things that we've done is the new MyDexcom account, as well as the tools that our agents have to be able to interact with our users around their experiences are continually improving. (15:14) And the goal there is to ensure that the user has the right experience from kind of an empathy perspective and also the information provided to the user by our agents, the tools that we've been launching and we're continually evolving. (15:29) But we've done some pretty major, new, launches in the last six months here.

Jake Leach (15:33)

Should result in more consistent experiences and more experiences meeting expectations. (15:38) There's a lot of great experiences out there, but we tend to hear more about the ones when they don't go right. (15:42) And that's one of, you know, there's always a learning there for us in terms of what we could do better. (15:48) Also, sometimes patients felt like they're being asked the same information over and over, and a big part of that is just making sure we understand what the issue is, but we shouldn't be placing that burden on the user. (15:59) Our system should capture that and then transfer it to the next individual who's working working with the user.

Jake Leach (16:04)

So there is a lot of change going on there. (16:07) I mean, we're gonna continue to innovate there. (16:09) One of the three pillars I put forth when I took over as CEO, as I said, we want to set the standard for excellence in customer service for the whole category. (16:19) Right? (16:19) So we want to be the best and we want to continue improving on the best.

Jake Leach (16:23)

And I feel like that is a really important part of making sure that customer we have customers for life. (16:28) Right? (16:29) They should should trust XCOM forever. (16:30) We should always be improving and living up to that. (16:32) So that is going on.

Jake Leach (16:34)

The thing about the replacements, I think the main thing here is just being much more clear in our messaging around replacements. (16:41) And, you know, unfortunately, there are instances where we have people calling us who are not users, who are trying to get replacement sensors that they can resell on the open market. (16:50) And that happens, like, you you would be surprised, Scott, but it I

Scott Benner (16:53)

mean, I am surprised.

Jake Leach (16:54)

It it happens. (16:55) Right? (16:56) And it's one of the things that we we don't want that to happen, but we also don't want to cause an experience at the expense of a user. (17:02) Right? (17:02) So sometimes I think users feel like they're being interrogated, but a big part of that is we need to make sure you're actually a customer who needs an actual replacement.

Jake Leach (17:10)

And so that's just one example of coming up with new systems to make sure we can authenticate users with less friction so that we can get them the sensors they need. (17:20) And then the last thing I'll just mention is one of things I think that's clear is the performance of the sensors. (17:25) Some of the, what would be considered a sensor failure is really just physiology. (17:29) We're at the end, know, we're continually pushing the envelope here on CGM technology with the most accurate, longest lasting sensor. (17:35) Not all sensors last.

Jake Leach (17:36)

When they don't last, we need to make sure the user gets a sensor. (17:40) But, you know, it's often not necessarily the quality of the sensor. (17:43) So when it says sensor failed, was nothing wrong with the physical sensor. (17:46) Was just, it wasn't able to sense glucose anymore, for example. (17:49) The body started encapsulating the sensor, over those, that period of time that the patient's wearing it.

Jake Leach (17:54)

And that happens to people at different rates. (17:56) It's uncommon, but it can happen, right? (17:58) So, but our number one goal is to make sure patients always have sensors. (18:02) Customers always need their sensors. (18:03) We don't want anybody to go a day without it.

Jake Leach (18:05)

So we're continuing working on systems on how to enable and and facilitate sensor replacements so that they always have that sensor. (18:13) And and we've made some improvements, and we're gonna keep making improvements to reduce friction.

Scott Benner (18:16)

So not that it would be comforting to a person who it was happening to, but what's the reality versus the Internet? (18:23) Meaning, like, how many people put it on? (18:25) I'm just gonna I've said this before. (18:27) I I almost feel bad saying it out loud. (18:29) My daughter wears a g seven for ten days plus the bonus time.

Scott Benner (18:32)

Works great the whole time. (18:34) I always just assume that means her physiology pairs well with the device, and I just I count it lucky. (18:40) But for someone who says, hey. (18:42) Mine shuts off on the seventh day. (18:44) I never make it past the eighth day.

Scott Benner (18:45)

It gets fuzzy on the whatever they say, I don't know how to ask the question. (18:48) How many out of a 100 people is that happening to? (18:51) Do you know those numbers?

Jake Leach (18:52)

Yeah. (18:52) Well, it's basically I mean, in in our clinical trial data, which is just a sample of patients, right? (18:57) But generally our performance in the field, because our clinical trials are large enough, we could generally see, you know, we track sense of survival. (19:05) And I'd say the fifteen day sensors are doing a little better than we did in the clinical study in terms of survival. (19:10) You know, most sensors do make it out to ten days, but not all, right?

Jake Leach (19:14)

Occasionally you have an experience where one doesn't. (19:16) And most of the time, again, it's based on the physiologic environment. (19:19) But our goal is kind of making sure that at least 80% of the sensors make it to the full sensor wear time. (19:28) And, you know, a lot of them, you know, it'll be day 14 or maybe day 13 where we start to detect that it's not sensing accurately. (19:35) But the vast majority today of users are getting, you know, the full full sensor wear.

Jake Leach (19:41)

But, you know, it's not occasionally, sensor falls off, something happens with the adhesive, something happens with the sensor not being able to sense glucose anymore because of the body. (19:49) So I think for us, it's around whatever experience you have as a user, whether every sensor goes ten days or maybe or fifteen days or some end early, we gotta make sure that people always have that sensor they need. (20:02) And that's when you sign up for Dexcom, that's that's our goal, to make sure you get get the sensors you have and and and that you need.

Scott Benner (20:08)

So is this a little bit of the idea that people don't go to the Internet to celebrate things going well? (20:13) And that when you see somebody complaining, it's mostly because they're having

Jake Leach (20:17)

It's probably part of it. (20:18) Yeah. (20:19) I mean I mean, I think that those you know, we don't often I mean, myself as a consumer, I don't often celebrate all the successes I have with products. (20:27) I'm I'm usually, you know, more vocal about the ones that didn't go right. (20:29) So I think that's that can happen.

Jake Leach (20:31)

It's valid. (20:32) Yeah.

Scott Benner (20:33)

Yeah. (20:33) I'm just trying to understand it even just from a personal experience because, I'm I'm telling you, on one hand, I can count the amount of these sensors that hasn't lasted ten days. (20:40) And I'm not saying we're doing something right or better. (20:43) I just, you know, I just assume that's the situation. (20:45) But okay.

Jake Leach (20:47)

One thing I have seen though is over time, people who have experience with sensors figure out what works best for them. (20:52) And so one of the things I do notice is that, like, and we see like earlier, when you're brand new to sensor therapy and technology, it, you know, you may have some learnings around how to make sure that that sensor stays adhered, stays functioning the whole time. (21:07) Right? (21:07) And so whether it's over patches or different types of skin prep, yeah, I think everyone kind of has there's different options out there, which, you know, one of the things we can do continue to do is make sure people are familiar with what the options are out there to help them continue to get the the full wear life.

Understanding Sensor Accuracy

Scott Benner (21:22)

Can you explain a little bit about accuracy? (21:24) So this is another thing we did in the council, and it's, I think, in the report too. (21:28) So I guess with the fifteen day or the seven day, it doesn't matter to me how you talk about it, but explain to people day one accuracy and maybe give them a little insight on how the algorithm, I'm gonna say scrubs the data it's getting. (21:43) I'm sure that's not the word you use. (21:45) But how does the algorithm make sense of what it's seeing, and why does what it's seeing why is it more sensible as time moves on after that first day?

Jake Leach (21:53)

Peter's a, expert at this. (21:54) I'll let, I'll let him talk about one.

Scott Benner (21:56)

Peter, did I ask that even reasonably clearly?

Peter Simpson (21:59)

Yeah. (21:59) Scott, so I'll explain a little bit of the the challenges that our sensor can experience, specifically on day one. (22:06) So accuracy in general, obviously, accuracy is super important, you know, for our customers and having consistent performance and something that we work on all the time. (22:15) Our sensors on the benchtop are really accurate. (22:18) I mean, we're we're, like, in the two to 5% MERD, super accurate and very consistently accurate.

Peter Simpson (22:23)

It's when you go into that biological environment that you you tend to see that variability and the inaccuracy start to occur. (22:30) And from a biological perspective and and, again, I wanna you mentioned it, but, you know, what we see is these these sensors that work exactly the same on the benchtop. (22:37) You put them on 10 different people, and you can get 10 different experiences. (22:41) And so part of the technology on our side is to develop, you know, that that interface, that membranes, and the coatings that work on all the different biologies that people have.

Scott Benner (22:50)

Okay.

Peter Simpson (22:51)

And, again, most people don't have problems on day one, but some people do experience some inaccuracy on day one. (22:57) And what's going on there is when you insert the sensor, it's essentially creating a very small wound pocket or a wound environment. (23:04) So your body goes through this wound healing response. (23:07) And what it's doing is it's kind of sending sending some cells in there to clean up this this environment. (23:13) And when that happens, you know, these cells tend to be very metabolically active.

Peter Simpson (23:17)

So the sensor itself is working perfectly fine, but the the body is interfering with the ability of the glucose to get to the sensor.

Scott Benner (23:24)

Okay.

Peter Simpson (23:24)

So that's what you're actually experiencing when you have those challenges on day one oftentimes. (23:29) And, you know, after that process takes its place, the sensor really, then stabilize or that wound healing environment in the interstitial fluid is really stable for for a long period of time. (23:40) And then just to close it out at the end, why some people don't get their sensors to work last all fifteen days, it's because the body over a long term starts to encapsulate that sensor and basically start with the sensor of glucose and oxygen, the things that it needs to do. (23:54) And in in that case, we you know, what we do with the algorithm on both these cases is we are looking at that environment, looking at the sensor signal to make sure it's of high quality. (24:02) And if it detects that it's not of high quality, then it will, either blank the data temporarily or it will shut off the sensor, especially at the end the end use.

Peter Simpson (24:11)

And and that's what it's saying. (24:13) You know, I don't trust the data. (24:14) I'm not gonna, present in a what may be inaccurate data to the customer, so the algorithm then shuts the sensor off. (24:21) So that's what we're doing, and we continue to evolve both the sensor technology to make it work better and better in a a larger population, but also advance the algorithms so that it can often then correct for those those issues and improve the performance of the system.

Looking Ahead to Dexcom G8

Scott Benner (24:36)

Well, I have a question I I hope is a kind of a thoughtful way of asking about g eight. (24:40) I know we're just getting this to fifteen day g seven, but if g eight was your first sensor ever, none of the other ones would have existed. (24:47) What of today's conversations and or problems that we have would never have existed if g eight was first?

Jake Leach (24:54)

I mean, obviously, g eight is the next big advancement for us from a glucose sensing perspective, and we're adding multi analyte to it as well. (25:03) You know, I think some of the variability that we see in performance, it certainly is going to attack that. (25:08) I mean, it has brand new technology in it that's is proprietary first of its kind where we have additional signal that we can measure from the sensor to basically self adjust. (25:19) You can think about it like calibrating. (25:21) Mhmm.

Jake Leach (25:22)

You know, you can finger state calibrate when needed or when you want to for for g seven. (25:27) And one of the it's one of the unique characteristics of our of our sensors. (25:30) Think of it being able to do that on its own. (25:32) So it's it's slow it's self adapting while you're wearing the sensor. (25:36) You know, this is just an algorithm technology.

Jake Leach (25:38)

It's algorithm and and trunks that measure an additional signal. (25:41) So it's very exciting. (25:43) Think that would so basically, some of the variability that folks have experienced in the past obviously wouldn't be there. (25:49) Obviously, the G8 adhesive is pretty phenomenal. (25:52) We've learned so much over time with adhesives.

Jake Leach (25:55)

We're in the middle of launching the third version of the G7 adhesive. (25:58) It's already starting to roll out to the field. (26:00) People are experiencing it. (26:01) We're already seeing the impact out there. (26:03) We'll roll that across all of the portfolio.

Jake Leach (26:06)

And a GA took those learnings and took it even farther. (26:09) So quite a bit. (26:10) I mean, there's still a little variability on the first day that you're gonna see. (26:13) You know, we've always been trying to minimize that. (26:15) There'll be an improvement, but that's why we say there's always opportunity for us to continue to innovate here and, you know, provide the absolute best experience.

Scott Benner (26:23)

Jake, you're a pro because I skipped my adhesive question because of time, and you still were able to fold it in there at the end. (26:28) I thought that was fantastic.

Jake Leach (26:29)

I didn't know. (26:30) Sorry. (26:30) Thank you for that. (26:31) Great.

Scott Benner (26:31)

You don't have my questions in front of you. (26:33) I just I had to pick something to skip for time. (26:35) And Peter, I wasn't kidding. (26:37) If you wanna come back and really talk, like, dig deep about this stuff anytime at all, I'll I'll do it while you're having lunch if you want. (26:43) Doesn't matter to me if it doesn't eat into your day.

Scott Benner (26:45)

But I really appreciate you guys doing this with me and continued success. (26:49) We love the product. (26:50) It really does change our lives every day here. (26:52) I I can't begin to say enough different ways about how it's made our lives better at my house. (26:57) So thank you very much.

Jake Leach (26:59)

Thanks for the time, Scott, and thanks thanks for being part of the the advisory committee that's really helping us.

Scott Benner (27:05)

Oh, no. (27:05) I appreciate it. (27:06) I I'm excited for the next one. (27:07) It's been an interesting process to actually hear other people's perspectives about what works, where they have rough spots, and the reasons behind the parts that they're worried about. (27:18) It's interesting to come into a space where you think that the thing you're saying is gonna be the thing everyone is saying.

Scott Benner (27:23)

And then when that's not the case, you go, oh, wow. (27:25) There's more to this than I even imagined. (27:26) And I'm thinking about it way too much. (27:28) Thank you again. (27:29) I really do appreciate your time.

Scott Benner (27:30)

I hope you guys have a a good afternoon.

Peter Simpson (27:32)

Thank you, Scott.

Scott Benner (27:33)

Take care. (27:40) Hey. (27:41) Thanks for listening all the way to the end. (27:42) I really appreciate your loyalty and listenership. (27:45) Thank you so much for listening.

Scott Benner (27:47)

I'll be back very soon with another episode of the juice box podcast. (28:01) If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. (28:07) Juice Box Podcast, type one diabetes. (28:11) But everybody is welcome. (28:12) Type one, type two, gestational, loved ones, it doesn't matter to me.

Scott Benner (28:17)

If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. (28:25) If you're new to type one diabetes, begin with the bold beginnings series from the podcast. (28:30) Don't take my word for it. (28:32) Listen to what reviewers have said. (28:34) Bold beginnings is the best first step.

Scott Benner (28:36)

I learned more in those episodes than anywhere else. (28:39) This is when everything finally clicked. (28:41) People say it takes the stress out of the early days and replaces it with clarity. (28:45) They tell me this should come with the diagnosis packet that I got at the hospital. (28:49) And after they listen, they recommend it to everyone who's struggling.

Scott Benner (28:53)

It's straightforward, practical, and easy to listen to. (28:56) Bold Beginnings gives you the basics in a way that actually makes sense. (29:01) Have a podcast? (29:02) Want it to sound fantastic? (29:04) Wrongwayrecording.com.

Read More

#1866 Beyond the Cure

Filmmaker Rebecca Hodges joins Scott to discuss her documentary, "Beyond the Diagnosis," which explores the emotional weight, caretaker fatigue, and the ongoing race for a Type 1 diabetes cure.

Proudly supported by
Omnipod
Dexcom
Cozy Earth
US MED
Contour Next
Minimed
Tandem
Touched By Type 1
Eversense
ABLEnow
Omnipod
Dexcom
Cozy Earth
US MED
Contour Next
Minimed
Tandem
Touched By Type 1
Eversense
ABLEnow
```html

Key Takeaways

  • Filmmaker Rebecca Hodges is creating "Beyond the Diagnosis," a documentary exploring the unseen emotional weight and resilience of people living with Type 1 Diabetes.
  • The journey toward a Type 1 Diabetes cure is advancing rapidly with new transplantation research, though bringing these therapies to the general public will involve regulatory and systemic hurdles.
  • Caretaker fatigue is a significant but often overlooked aspect of the disease, profoundly affecting parents and advocates who fight for a cure 365 days a year.
  • Sharing authentic, gritty, and real stories about Type 1 Diabetes is crucial for building a deeper baseline of empathy and awareness among the general public.
  • Touched by Type 1 and similar advocacy groups play an essential role in providing community, support, and necessary funding for ongoing diabetes research.
FULL EPISODE TRANSCRIPT

Introduction and Sponsors

Scott Benner (0:00)

Welcome back, friends.

You are listening to the Juice Box podcast.

Rebecca (0:12)

My name is Rebecca Hodges.

I am a filmmaker.

And, yeah, my goal is just to to tell impactful stories and hopefully create some positive change in the world.

Scott Benner (0:24)

If this is your first time listening to the Juice Box podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all.

Look for the Juice Box podcast and follow or subscribe.

We put out new content every day that you'll enjoy.

Wanna learn more about your diabetes management?

Go to juiceboxpodcast.com up in the menu and look for bold beginnings, the diabetes pro tip series, and much more.

Scott Benner (0:49)

This podcast is full of collections and series of information that will help you to live better with insulin.

While you're listening, please remember that nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise.

Always consult a physician before making any changes to your health care plan or becoming bold with insulin.

This episode is sponsored by ABLE Now, tax advantaged savings accounts for eligible individuals with disabilities.

If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs, and many people in the diabetes community do.

Scott Benner (1:29)

With ABLE now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid.

Learn more and check your eligibility at ABLE now dot com.

You spell that ablenow.com.

Today's episode is also sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed seven eighty g system and their new sensor options, which include the Instinct sensor made by Abbott.

Would you like to unleash the full potential of the MiniMed seven eighty g system?

Scott Benner (2:05)

You can do that at my link, medtronicdiabetes.com/juicebox.

The podcast is also sponsored today by the Kontoor Next Gen blood glucose meter.

This is the meter that my daughter has on her person right now.

It is incredibly accurate and waiting for you at kontoornext.com/juicebox.

Rebecca's Journey into Filmmaking

Rebecca (2:26)

My name is Rebecca Hodges.

I am a filmmaker.

I started my own company, which is called Hodges Film in 2016.

I started it in Orlando, but now I am Boston based.

And, yeah, my goal is just to to tell impactful stories and hopefully create some positive change in the world.

Scott Benner (2:46)

Oh, that's awesome.

How do you make a decision like that?

Like, when most of us are just thinking about paycheck, I wanna maybe get me some health insurance.

I'd like to have a place to live.

How do you land on something that sounds to an outsider?

Scott Benner (3:00)

I'm an outsider.

It sounds like what you just said was, I decided to waste my time and not make any money.

And so, like but but but, obviously, ten years later, you're still doing it.

So what's the path that gets you to that?

Rebecca (3:12)

Well, the funny thing is that I I started off with a scholarship to college, and I went thinking that I was gonna go pre med.

And when I got there, my second semester, I went into a film class, and I stopped going to all of my other classes so that I could just go to my film class and spend all of my time working on my project there.

And when I finished it, the professor of the class took me aside, and he said, I think that you're quite talented, and I think that this is something that you might actually want to pursue.

And when I told my dad, I don't think I'm going premed anymore.

I think I wanna go into film.

Rebecca (3:51)

And he was like, thank god.

We didn't think you wanted to be a doctor anyway.

Oh,

Scott Benner (3:55)

really?

Well, that's nice.

Are your parents, hippies?

What what's the how come they were so accepting?

Rebecca (4:01)

No.

My dad was a lawyer and my mom was a nurse, but I think that they just saw in me that I'm a very creative person.

And even though I thought going down one path, you know, to have insurance and to have

Scott Benner (4:14)

Yeah.

Rebecca (4:15)

Money to buy a house, you know, they saw that, and they were like, we still think that that's the wrong path for you.

Scott Benner (4:21)

Isn't that awesome?

Oh, it's wonderful.

Rebecca (4:22)

Yeah.

Scott Benner (4:23)

And then when you're done with your education, how do you get into the business?

Do you end up working for somebody?

You try something on your own?

What's the first step?

Rebecca (4:31)

Yes.

So I I finished my degree actually at Full Sail in Orlando.

Mhmm.

And out of that, I was, hired into an internship.

And from the internship, I was hired to become an assistant editor.

Rebecca (4:46)

And then I told my boss, I don't just wanna be an assistant editor.

I want you to give me some more production work.

So we at the facility, we bought a camera, I started going out and producing my own projects.

Then within the next two years, I was a producer, director, and editor at that same facility.

And I when I left there in 2016 and started my own company, it was because I wanted to, you know, curate the projects that I was working on.

Rebecca (5:13)

And that's, you know, again, the storytelling that I like to be involved in is stories that are creating change.

Scott Benner (5:20)

Okay.

Well, that's really awesome.

You're a bit of a go getter then.

Rebecca (5:23)

I am.

Yeah.

I think so.

Scott Benner (5:25)

No.

It sound I mean, it sounds like it.

You're like, I I have a job in the thing I like.

Not enough.

Give me more.

Scott Benner (5:30)

This was fun.

I gotta get out of here.

You know, that's great.

That's good energy.

Rebecca (5:34)

Yeah.

Scott Benner (5:35)

Listen.

I'm not gonna lie to you.

When I was a young person, I used to think I wanted to write for movies.

I didn't do what you did.

I started I finally had an idea that I liked and I sat down and I wrote all day.

Scott Benner (5:48)

And I remember I just I think I had just been married.

We were really young.

And I showed it to my wife when she got home.

She read the whole thing, you know, and she's like, this is really very good.

And I was like, thank you.

Scott Benner (5:58)

And she goes, have you ever read A Bridge to Terabithia?

And I said, no.

Why?

And she goes, well, you're writing it.

And I was like and I went, oh.

Scott Benner (6:08)

But what I took Rebecca, instead of taking from that, that the first time I had an idea, it was it was reasonable.

You you know what I mean?

Instead of taking that, I thought, oh, everybody's already had all those ideas.

I'm never gonna have a new idea.

And I let it make me, like, disenchanted with the whole idea of the whole thing.

Rebecca (6:26)

Yeah.

Scott Benner (6:26)

It threw me.

So

Rebecca (6:28)

Finding new ways to tell an old story is, I think, something that every creator has to face.

The Genesis of "Beyond the Diagnosis"

Scott Benner (6:35)

Yeah.

Well, now I do that with people who live with diabetes.

So it it worked out well, and I brought it up so I could say that so I could segue into k.

I just like to pull the curtain back so everybody knows how they're being manipulated.

Can you tell me what you're working on right now?

Rebecca (6:51)

Yeah.

So the film is called Beyond the Diagnosis.

It's a film that follows real people living with type one diabetes and explores the parts of the disease that I don't think a lot of people get to see.

So the constant decision making, the emotional weight, and then at the end of the day, the resilience that these people are taking with them to live their life every single day.

Scott Benner (7:13)

Okay.

How long have you been working on it?

Rebecca (7:15)

Oh, boy.

The film is focused on Elizabeth Forth, who you know well, but she is the founder of Touched by Type one and Dancing for Diabetes.

I started working with her in 2014, and we worked on different stories, different awareness campaigns for years.

And I think probably after five years, I said, you know, I think that this is a bigger story.

I think that we should be making a feature film.

Rebecca (7:40)

Mhmm.

So we kinda talked about it for a while.

And then a year and a half ago, I said, Elizabeth, I'm going to put together a board to help get this film up and running.

And so at that point, we said, this is go time, and we put together a team.

She came on as my executive producer.

Rebecca (8:00)

I'm producing and directing.

Touched by Type one is a partner.

Film is in association with them.

We then brought on the Diabetes Research Institute.

So it's been growing and getting momentum ever since.

Scott Benner (8:12)

That's awesome.

How did you know Elizabeth back then?

Do you have diabetes in your family or your life?

Rebecca (8:17)

No.

I actually knew nothing about type one when I met her.

I met her through an intern at my previous job.

My intern came to me and said, I'm shooting a live dance show, and I really need some help.

And so I started working with her on that.

Rebecca (8:34)

And then she was like, I think you need to meet Elizabeth, and you need to take over.

So I met Elizabeth, and the rest is history.

Scott Benner (8:40)

Yeah.

Yeah.

No.

She's wonderful.

She's another go getter with a lot of good energy.

Rebecca (8:44)

She sure is.

Scott Benner (8:45)

Yeah.

I love the interns.

Like, I took a job I shouldn't have taken.

Was that about the vibe?

Like, I need help.

Scott Benner (8:52)

Or just because that dance show is huge.

Yeah.

But, yeah, it's quite an undertaking.

Rebecca (8:57)

Bigger and bigger every year.

Scott Benner (8:59)

Yeah.

Yeah.

Yeah.

Yeah.

Well, and that's something else.

Understanding the Emotional Weight of T1D

Scott Benner (9:01)

I want you to remind me when we're done that I have a question I wanna ask you while we're being recorded, but it's about me.

It's not about this.

So don't I wanna be greedy at the end.

Okay.

So tell me then in your time with Dancing for Diabetes and with Elizabeth and Touched by Type one, the time you've been around it, how did your understanding of diabetes grow?

Scott Benner (9:21)

And then I wanna know how it maybe moved again after you started making the film.

Rebecca (9:27)

When I started in 2014, I knew absolutely nothing.

And I actually, my very first interview, I was interviewing a little girl who was part of the Elizabeth has this program called the kids and teens dance program

Scott Benner (9:44)

Mhmm.

Rebecca (9:44)

Where she gets together groups of children and teenagers who have type one diabetes so that they can all just be, you know, normal kids together in a dance.

And I was interviewing one of the girls, and we asked her a question about how does it feel like when when you're overwhelmed, what do you do?

And she said, I talked to my sister, and then she got really quiet.

And I we said, how are you feeling now?

Are you gonna cry?

Rebecca (10:09)

And she just completely broke down.

I guess that right before she had come into class, she and her mom were reading about the search for a cure and how it's right around the corner, and she was so excited.

But, you know, you get excited, then you're waiting, waiting, waiting, and it's like this never ending journey.

And when she started crying, I just emotionally broke inside.

And I was like, I want to help these people.

Rebecca (10:33)

You know?

I'm not gonna be the one to cure this disease.

But if I can tell stories to create more awareness or to engage people with the scientific community.

Like, that's what I can do.

That's what my part will be.

Rebecca (10:45)

So I started learning with every person that we interview, with every project that we tackle.

I learn more.

Now I feel like I'm quite educated about type one diabetes.

And when I'm talking to, you know, people who don't know so much, I'm able to tell them a lot about the disease.

I will say that when we started filming, which we started filming around the the twenty fifth annual Dancing for Diabetes show this past November.

Rebecca (11:11)

And when we were filming that, what hit me really hard was caretaker fatigue and getting to know one of our protagonists, Lindsay Kiser, who has the Life on Sweet Street Facebook and Instagram for a social platform.

Mhmm.

She doesn't have type one diabetes herself, but she has three children who all have type one diabetes.

Mhmm.

And so in her sharing her stories about, you know, watching these kids grow and and taking care of them, hearing about the caretaker fatigue, and then also hearing Elizabeth give her interview the day after the Dancing for Diabetes show, and she was feeling, like, really low that day.

Rebecca (11:52)

She had you know, she works all year round for this show, and she's on such a high that night, and she's collecting dollars to go towards curing this disease.

And then the next day, she was so low, and she was saying, well, we're gonna start again for next year because we still don't have a cure for this disease.

Scott Benner (12:09)

Yeah.

Rebecca (12:09)

So we're celebrating twenty five years of this show, but we're also twenty five years without a cure.

Mhmm.

So it wasn't so much the knowledge about the disease, but really seeing, you know, how impacting it is on emotional welfare of everybody involved.

Scott Benner (12:27)

Yeah.

Rebecca, striking me how similar the decision you made was to the one I made and how Elizabeth's experience is similar to mine as well.

I you know, for context, my daughter is 22 now, but she was diagnosed, like, right after her second birthday.

And I remember thinking a year later, like, I I should help somehow.

I can't.

Scott Benner (12:50)

I'm not gonna cure this.

I'm not a doctor.

I'm not a scientist.

I don't understand any of it.

I wonder what I could do.

Scott Benner (12:55)

And and I started doing I mean, what was the beginnings of all this?

And Right.

I see it help people immensely every day.

And yet, I can really relate to Elizabeth because it's hard not to it's hard to fight off the feeling that you haven't done enough.

That that it's very real.

Scott Benner (13:15)

And you actually have to find a way to compartmentalize it or it'll take you over.

So I yeah.

But I know how and I also know how hard she works and how like, she and I probably text.

I would say we probably text a dozen times a year, you know, about something.

And she's just always thinking about how to help, how to do, how to create, you you know, it's really admirable is Yeah.

Scott Benner (13:40)

Is a word.

Anyway, I, it's nice that you fell into that feeling after having that experience.

Hard not to.

Right?

Like, not to be around another person feeling that way and not have more than just a little bit of, I don't know, of a reaction to them.

Scott Benner (13:55)

And you had a way you felt like to what?

What did you think?

Shine a light on it?

Help other people understand?

Like, when you said I'm gonna help, like, how did you feel like like, where did you think your talent would help?

Scott Benner (14:08)

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Scott Benner (14:21)

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Scott Benner (14:32)

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Scott Benner (14:58)

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Scott Benner (15:10)

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Scott Benner (15:29)

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Rebecca (16:15)

Yeah.

So I think shining a light on it, helping other people understand was the beginning, and then that grew.

So a few years later, we had interviewed Josh and Jamie Terry, who are the parents of Kisi Terry.

Scott Benner (16:30)

Mhmm.

Rebecca (16:31)

Kisi had a misdiagnosis when she was five years old, and she had strokes and cerebral edema and ended up passing away from complications of of being misdiagnosed and not diagnosed with type one diabetes on time.

And so when I when we created a story around that, what I could do at that point is share the the signs of what type one diabetes looks like.

And every year on on Kisi's birthday, we actually reshare those posts of of things to look for.

So, you know, talking about misdiagnosis, talking about signs and symptoms.

And then that shifted to, again, the the emotional health.

Rebecca (17:13)

What does it look like to be taking care of one another and and growing a community?

So every year, the goal changes, the project changes, the interviews change, but it's it's constantly shifting and just trying to figure out how to better support the community

Scott Benner (17:28)

Yeah.

Rebecca (17:28)

And how to share those stories to engage a wider audience.

Scott Benner (17:32)

You ever get I get sullen sometimes when I think of all the stuff that I've created that is sitting somewhere not doing anything anymore, but I know it would still be valuable if I could find a way to repurpose it.

Do you does that I mean, after you've been at this for a while, do you have those thoughts sometimes?

Rebecca (17:48)

Well, no.

Because this project's all about repurposing.

Scott Benner (17:51)

Yes.

But that's what you're doing really.

Right?

Is you're taking everything you've learned and putting it into one place.

Rebecca (17:56)

Yeah.

And and because this documentary is focused around Elizabeth, and I've been working with her for, you know, going on eleven years now.

We're taking footage that we've collected.

So it's a big undertaking as a filmmaker to to go through all of this, but repurposing everything that we've already created and merging it with all of the new content that we're gathering.

But I think that that's one of the powerful things is, like, look at look at how far we've come, but look at how far we still have to go.

Scott Benner (18:27)

Yeah.

Tell me something.

Don't give me a a shiny answer.

Right?

Just really like, what have you learned about Elizabeth making the film that you didn't know before?

Rebecca (18:37)

That she puts on a brave face, but that she can be sad too.

Scott Benner (18:41)

You didn't know that prior to that?

Rebecca (18:43)

No.

Because she she's so stoic.

And I tell this to her all the time because whenever I interview her, I say, you gotta let me in.

And she she always does have the shiny answers.

And it's because she's running all of these programs, and she is the go getter, and she's trying to help so many people that she doesn't let people in.

Rebecca (19:02)

But she can be sad, and she it's a type one diabetes.

It's a very lonely disease.

I think when she actually let me in and she showed me that sadness and she showed me how hard it is to fight for this twenty four seven, three hundred and sixty five days a year.

Honestly, after we filmed that day, I when I flew home, I felt like I needed to take a few days for myself because, you know, when you see people sad, it it impacts you.

Yeah.

Rebecca (19:31)

And this was, like, a very deep I don't wanna say she's depressed because not appropriate.

I

Scott Benner (19:37)

understand what you're saying.

Rebecca (19:38)

But it it was it was heavy.

It was really heavy.

Scott Benner (19:40)

Yeah.

Rebecca (19:41)

You know, she she doesn't show that to many people and being able to see that and really seeing the reality.

And that was the same thing.

Another person who's involved in this film is Chris Rudin, and he's a public speaker, and he's a go getter, and he's very positive, positive, positive.

And when I talked to him, said, I don't want all of the positivity.

Like, of course, we're gonna talk about that, and I wanna hear about all of the things that you've done to turn this disease into something that works for you every day or something that you can share, something that you can be useful with to other people.

Rebecca (20:13)

But I said at the end of the day, I also wanna hear about the the underlying challenges and everything that you're up against.

And he was like, oh, I can talk about that all day because it's every day all of the time.

Scott Benner (20:23)

Yeah.

That's not hard to find.

I've I've interviewed Chris a few times.

He's good at sharing how he feels.

Yeah.

Scott Benner (20:29)

When you talk about, like, the heaviness that came from Elizabeth, was it heaviness around what she's doing, the mission of it, or did any of her personal experience with diabetes come through?

Because she has type one.

And you're you know, it just occurs to me that you're out there pointing a camera at other people and talking to them about what it's like to live with diabetes while you're, you know, showing what Elizabeth is trying to do for those people and for type one in general.

But do we get to talk about what it's like for her personally?

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Rebecca (22:10)

Yes.

We do.

And that is one of the the main parts of this documentary is we're we're going behind the scenes.

So while the main through line of the doc is about Elizabeth putting together this twenty fifth annual dancing for diabetes show, we really get to see the different things that are happening.

Like, for instance, we see her having to do a a pod change in the car because she something was faulty, and she was getting errors.

Rebecca (22:40)

And so she had to go into her car in between interviewing other people to go and change her her sight on her body.

Mhmm.

And then, you know, we're going to interview somebody else, and she's going low.

And she keeps dropping, dropping, dropping.

Alarms are going off, and she's like, oh, well, I left my fruit snacks in the car.

Rebecca (22:58)

Does anybody have anything?

And everybody's running around looking for sugar, and it was right around Halloween.

So we were in a school, and the teacher opened up the door, and she's like, kids, we need candy.

So but, yeah, I think that there are so many little vignette that are happening here where it is focusing on what's happening behind the curtain.

That is where that sadness lies.

Rebecca (23:20)

It's in these these individual moments that are happening all of the time that people don't necessarily see.

Documentary Production and Storytelling

Scott Benner (23:28)

I'm constantly faced with the idea that the online digital world today is not the same as it was when I started all this.

And I usually tell people, like, there was a time I could have written a blog post, and it could have been read by 40,000 people in twenty four hours.

Mhmm.

And now I arguably have a a much larger platform, and it's a thousand times harder to get something in someone's hands.

Mhmm.

Scott Benner (23:53)

So what's the distribution like for this?

How are you expecting to to get it into people's hands and get them to see it?

And is it do you have a I would imagine more of a macro view of what success looks like.

Right?

This isn't it's it's not a Mission Impossible nine or something like that.

Scott Benner (24:11)

You don't expect everybody to go the first day.

Right?

Like, how so what's the do you have a plan, or is that a thing you haven't put together yet?

Rebecca (24:17)

We do have a plan.

We definitely want it to be seen, in festivals.

We're planning a premiere in a theater.

The larger distribution plan is something that I'm working out now.

I'm going to bring on a sales agent.

Rebecca (24:31)

So in the film world, working with a sales agent is where you're able to connect with distributors and and make sure that your film gets seen by a large group of people, which is the goal here.

Yeah.

But, yes, we're working on distribution plans.

The goal of the film is really to to engage the type one diabetes community because a lot of people say that this is an invisible disease, and we want those people to feel seen and feel understood.

We also wanna educate the general public and build a deeper baseline of awareness and empathy around the disease.

Rebecca (25:07)

Then we also wanna translate that awareness into meaningful change, whether that's stronger advocacy, whether it's legislative progress or, money going towards research and innovation, because we're in a global race for a cure, and so we want to also bring that to the front lines.

So I would say that those are our goals.

We also want people who are involved in the the making of the film to be able to share it with all of their followers.

Scott Benner (25:34)

Yeah.

Rebecca (25:34)

And hopefully, it just gets to gets to the people that really need to see it whether they have type one diabetes or not.

Scott Benner (25:41)

Makes its way around.

Do you think that it will resonate outside of people with type one?

Like, I mean, how much of it do have shot already?

Is it I mean, are you in the editing phase now?

Are you still shooting?

Scott Benner (25:54)

Where is it at?

And and who do you think who do you think the real audience is for it?

Rebecca (25:59)

So we're working in three phases.

We had preproduction and the production of phase one where we shot around the the twenty fifth annual Dancing for Diabetes in November.

So I would say that that's about 65 or 75% of the film that's in the can.

Scott Benner (26:15)

Mhmm.

Rebecca (26:15)

And then we're going to go around and shoot with the rest of the people who are involved in the film.

So that's Chris Rudin, Gary Forbes, the Terry family, Lindsay Kiser, Camilo Ricordi at the Diabetes Research Institute, and then Penelope Polly, who's an endocrinologist in Orlando.

Yeah.

So we're going to go and shoot we're gonna get some scientific background and some education for those who don't necessarily understand the disease.

Mhmm.

Rebecca (26:41)

And then we're going to do all of the vignettes where we explore all of those individuals' lives and what they're doing to impact people living with type one diabetes.

Scott Benner (26:50)

Oh, that's cool.

You'll do the vignettes, then the doctors will kinda be like whiteboard and explainers and then move people into another story.

Is that the idea?

Rebecca (26:58)

Yeah.

And especially, there's so much going on in this race towards a cure right now.

So, you know, I'm gonna get doctor Camilo Ricordi to explain in layman's terms what's happening, because it's really fascinating.

Scott Benner (27:11)

Yeah.

Rebecca (27:12)

So once we have all of that, that will be phase two, and then post production will be phase three.

And we're looking to premiere the film.

Our target date right now is February 2027.

So although it seems far away, it's not.

Scott Benner (27:26)

It doesn't seem far away to me.

I'm old now.

I time moves so quickly.

I just I can't believe how fast.

I have something coming up next week that I keep looking out on the counter.

Scott Benner (27:36)

I'm like, that can't be right.

I'm not so that was, like, a year away when I said yes to that.

So it's Wednesday.

I gotta go on Wednesday?

So I should probably think about this for half a minute before I head over there.

Scott Benner (27:50)

No.

No.

That's really it's really lovely.

So when you're setting, do you kind of like I don't know.

Do you do you imagine it in your head before you shoot it, or do you start talking to people and then see what you get?

Scott Benner (28:03)

And then do you fit the pieces together then?

Like, do you know what I mean?

Like, is it a puzzle in a box when you start, or do you open up the pieces and go, I wonder if I can make something out of this?

Rebecca (28:12)

Oh, it's for sure a puzzle.

The way that I work is I love note cards.

Scott Benner (28:18)

Mhmm.

Rebecca (28:18)

And I'll write out ideas of of different things that are happening.

Again, in working very closely with Elizabeth, we were talking about different events that she had going on, and she wanted to go back to her high school where the actually, it was her middle school where her first Dancing for Diabetes was ever held.

So we create looking at events, different things that are going on.

I make different scene index cards.

And then I put them all up on a whiteboard, and I start shuffling them around.

Rebecca (28:49)

What leads from one scene to the next?

And then how do we get every scene should lead into the following scene.

And then if you need more explanation of something, where does that fall in?

And so, yes, it becomes this giant puzzle, and you're constantly shifting things around.

And then once you film, it shifts all over again because you have things that happen while you're filming that you didn't anticipate were going to happen.

Rebecca (29:12)

So then you kind of add those in, and and it becomes this giant shuffle.

But when you're you're focused on a through line of where you need to go, everything will eventually fall into place.

But the shifting and the the tossing out of ideas, it's it's a beautiful creative meh.

Do

Scott Benner (29:31)

you edit as you go?

Rebecca (29:32)

I don't typically edit as I go.

I have had to for this project because we we needed to create a a pitch deck, which you use to, you know, launch out to investors.

We needed to create a trailer for we just had a a big gala event that we held in Orlando at the doctor Phillips Center.

So I've had to edit my way through this because we're trying to show individuals different scenes that are happening and and why they would either want to watch it or get involved and invest in.

I have a really great idea of what we've collected so far because I'm always there during all of the filming.

Rebecca (30:09)

But I typically like to collect everything and then sit down and immerse myself in the edit.

Because once I get into the edit, I I like to be sitting here for, you know, eight to ten to twelve hours because everything starts flowing and you just you're very present in the edit.

Scott Benner (30:26)

How many hours of film do you have so far?

Rebecca (30:29)

I wanna say thirty.

Scott Benner (30:30)

Okay.

That's a lot.

Are you gonna be at the thing on that next week for for Elizabeth in Atlanta?

Rebecca (30:36)

I will not be in Atlanta.

No.

Scott Benner (30:38)

Okay.

Because you have similar coverage already.

Is that the idea?

Yeah.

Yeah.

Scott Benner (30:43)

Yeah.

It's so interesting.

How do you keep it from feeling Pollyanna?

Do you know what I mean?

Like, I've seen stuff in the past where it's just like, wow.

Scott Benner (30:51)

Why is this all, like, big smile lady where everything's great?

And, like, like, how do you, like, how do you get to the grittiness of it without making it a bummer?

But making it real enough that it doesn't feel like it's does that make sense?

Like Yeah.

Yeah.

Scott Benner (31:08)

Have you had concerns like that?

Line there.

Yeah.

Rebecca (31:10)

Yeah.

There's a fine line, and you actually asked me earlier, and I don't even think that I answered it.

You said, why would somebody who doesn't have type one be interested in watching this?

I think that there's a fine line here of telling the grittiness because people who don't see type one don't get it.

I'm just they don't get it.

Scott Benner (31:30)

For sure.

Rebecca (31:31)

And when they, you know, see a kid who's checking their blood sugar and they're like, oh, well, you just shouldn't have had that soda.

You know?

All of the the misconceptions that are out there, they're so real, and they impact these people every single day.

I think that the vignettes will be focused on on underlying issues of what each protagonist deals with.

And then through those issues and through facing that adversity, they've all come out on the other side to do something, to create something.

Rebecca (32:04)

So, like, Gary Forbes, he is a former NBA player, and he is now working on a comic platform, where he turns kids with chronic conditions into superheroes.

And, specifically, one of those characters has type one diabetes.

But it's through his journey of you know, he had all sorts of things that he came up against going into DKA, going into he had two car accidents because he was low.

So there are all of these things that build up his story.

And now what are the actions that he's doing to to share that story and to better the lives of others?

Rebecca (32:39)

So I don't think that it's ever going to be Pollyanna because there are so many, you know, complex emotions that are the underlying drivers of of the positive outcomes.

Yeah.

So I wanna share all of that.

And I think that that's intriguing to anybody whether you have type one diabetes or not.

I would love to watch a movie where, you know, you see somebody who's dealing with this disease, something that you don't truly understand.

Rebecca (33:03)

You're like, wow.

I didn't know that, you know, people are afraid to go to sleep because they might not wake up in the morning.

I didn't know that somebody could be misdiagnosed at five years old and and then pass away.

I didn't know that parents who, you know, just like you, have a two year old who is diagnosed.

It's like taking care of a baby.

Rebecca (33:20)

You need to be checking them all the time.

So I think that there are fascinating stories that need to be told to people who have no idea about what's going on, people who have type one who can watch this film and be like, yes.

Somebody really gets what this is like.

And finally, there's a story that that everybody can watch that kind of explains what's going on.

Scott Benner (33:41)

Do you think it it's helpful, like, in your ability to be dispassionate about it that you don't have type one or a personal connection to it, but you have context?

Rebecca (33:50)

Yeah.

Probably.

Scott Benner (33:51)

Yeah.

I'll tell you because what I've I've I've been around I don't wanna call it the space.

That feels weird.

But I've been doing stuff in diabetes for a really long time.

When I'm dissatisfied with how people are doing things and I'm, you know, I'm I'm busy acting like the king of the world in my own mind or in this room.

Scott Benner (34:07)

I don't like it when people come off like the, I don't know, the secretary from Ferris Bueller.

You know what I mean?

Where it's just like, oh, gosh.

Golly.

Everything's awesome.

Scott Benner (34:15)

You know?

Right?

Like, that stuff.

And I don't like it when people are like, I almost died today for the want of a cookie.

And I'm like, there's a middle there's a middle in there that's not so, like, either dramatic or and and ham fisted or, you know, dismissive of the seriousness of it and trying to make it all be like, oh, no.

Scott Benner (34:37)

I'm good.

Everything's good.

Like, there's a reality in the blend there, and I I'm I'm super excited to see you to get ahold of that.

That that is just a to me, we don't have enough of that around diabetes.

If you want people to really understand it, then you have to let people talk, but you have to also mix in, you know, real life and some levity.

Scott Benner (34:58)

And it's gotta be a full blend of what it means to be a human being, not just, you know, not just a a slice of it that makes it seem all one way or the other.

I don't know if that makes sense.

But

Rebecca (35:09)

No.

Definitely.

And I think exactly what you just said, the reality holds both truths.

Like, it's an awful daily it's a horrible disease.

And the reality of of having to deal with that all of the time while also trying to live out your dreams and do amazing things.

Rebecca (35:27)

I mean, the fine line exists in everyday life.

Scott Benner (35:30)

I just I find too with interviewing people.

So I I don't have the benefit of looking at people, which I think has sort of made me better at this over time because No.

There's a lot of intimating that has to happen, and I can't be wrong or it it comes off as false pretty quickly.

And I was just listening to an interview I did recently with, like, a 25 year old type one.

And you could tell that she had there was stuff right under the surface she wanted to let out, but she didn't have the words or the reason to let it out.

Scott Benner (36:02)

And then if you just ask the right question, it it opens a floodgate for them.

And they they can unburden themselves, but in a but not in a, a distasteful way.

It's just very real.

And, you can tell how the better they feel when I'm done speaking to them, the more sure I am that the conversation was valuable for someone else to hear.

Does that make sense?

Rebecca (36:25)

Yeah.

Yeah.

For sure.

Scott Benner (36:26)

So it's a really interesting job.

I much rather what I'm doing than the stuff I've done previous in my life.

It's a it's a great job if you can get it, is is what I'm saying.

Will you miss it when it's over, or do you think you'll have had enough of the immersiveness of of the process?

Like, how because you've done other things in the past.

Scott Benner (36:45)

Like, do you find yourself, like, does one job just build your humanity for the next one?

I mean, do you lose it completely?

Like, is there a world where you'll wake up six years from now and, like, have not thought about diabetes for a while?

Is it a thing that you process, or how does that all work for you personally?

Rebecca (37:02)

No.

Elizabeth can't get rid of me.

I'm on I'm on the board of touched by type one now.

I don't ever foresee a day where I'm not working with touched by type one and Elizabeth.

I know that this documentary film will come to an end, and I do think that I'll be sad when when it's over.

Rebecca (37:22)

But like you said, this is this will just build up to the next project, and I've gotta find something else that I think is interesting and that I feel passionate about and think that people should know about and keep the ball rolling.

Scott Benner (37:36)

It's interesting.

So you don't really know what you'll do after this?

Rebecca (37:40)

I have a few ideas.

Scott Benner (37:41)

Okay.

Rebecca (37:42)

Because you should always have something in production and post production and in development.

So

Scott Benner (37:47)

Is it about a a a little too old, not that handsome podcaster?

Is that what's happening right now?

I'm just kidding.

Please don't

Rebecca (37:54)

You you know how to find me.

Scott Benner (37:55)

If you pointed a camera at me, I would be either I don't know what would happen.

I is is one of two things would happen, Rebecca.

Either the fat kid inside of me would put his head down, or I would be absolutely unbearable.

Would I would pontificate forever.

Rebecca (38:13)

I have filmed you at at

Scott Benner (38:16)

Oh, yeah.

Yeah.

Yeah.

Rebecca (38:17)

My goodness.

Scott Benner (38:17)

At Touched by Type one.

Rebecca (38:18)

At the the Touched by Type one oh gosh.

What is it called?

The annual Yeah.

Scott Benner (38:25)

The the conference.

Yeah.

Yeah.

The conference.

Rebecca (38:27)

The conference.

Thank you.

Scott Benner (38:28)

The conference.

Stand up there.

That was that was is that right?

Is that where it was?

Rebecca (38:32)

Well, I've seen you there, like, three or four times.

And one time you were over talking to a child at a table, and I went running over with my camera, and you were like, get out of here.

Don't tell me.

Scott Benner (38:43)

Was that a couple of years ago?

Rebecca (38:45)

Yeah.

Scott Benner (38:46)

Yeah.

I was worried about my weight back then.

Now you can point it at me if you want to.

It's different.

But, no.

Scott Benner (38:51)

I I just know that I'll like, there was I I did this thing for JDRF.

It was huge in, Georgia one year.

I mean, there was a room.

It was 650 people in that room.

And there was this part of me inside.

Scott Benner (39:04)

It was like, please get a nice wide shot of me talking to 600 people.

Like, that and then there was the rest of me that was like, but could you shoot it from the roof?

And I actually said to the cameraman, I was like, do not point that thing at me from down there.

I was like, you better go find a ladder and climb, my friend.

I used to think of my I didn't think of myself as caring about that.

Scott Benner (39:23)

But when push came to shove and a camera came out, I was aware of it.

And now I've actually, you know, with the help of a GLP medication, Rebecca, I've lost, like, 70 pounds.

Like, and now I don't think about it anymore.

It's very freeing, actually.

I actually just did some content for Omnipod recently.

Scott Benner (39:40)

Mhmm.

And it was one of those things like, you know, show up at a studio, stand in front of a big, you know, high def camera with a lot of light and nowhere to hide.

And Yeah.

And I and I was like

Rebecca (39:52)

It's terrifying.

Scott Benner (39:54)

And well, the the terrifying part was how not terrified I was, which is why I think that if you pointed the camera at me, you would just be like, this guy's insufferable.

He has a lot of thoughts.

But I had this nice moment afterwards when, I mean, when they got done with it, obviously, some very talented people, you know, do the editing and and, you know, do the color and all that stuff.

It looks so it looks amazing when it's done.

But I had a few people online tell me that I was really natural at that format.

Scott Benner (40:23)

And I thought, oh, I've been avoiding doing that my whole life.

And then somebody said, I think this would be a great way for you to get some of your information out.

And all I thought was, who's gonna do that?

Like, how am I I don't know how to light that.

I don't have I'm not I don't wanna get involved editing video.

Scott Benner (40:38)

Like, it all just seemed, like, overwhelming.

And I know that's ridiculous because most of the world just holds up their phone and just puts out whatever they do and doesn't worry about the rest of it.

Mhmm.

But I think I might be a bit of a princess now that I've seen myself color matched.

I think it's I think maybe that's how I prefer to look.

Scott Benner (40:56)

Even even today, I'm I'm not sure what I'm gonna do about it.

But do you do any of that?

Like, I'm not asking you for me.

I'm actually my my bigger question is is, how do you make a living doing what you're doing?

Like, it sounds like this project's taking years.

Scott Benner (41:08)

Right?

So,

Rebecca (41:09)

like And this project will take years.

Scott Benner (41:11)

Yeah.

So do you do do you intersperse with, like do you do other work?

Like

Rebecca (41:16)

Yeah.

Scott Benner (41:16)

Yeah.

Rebecca (41:17)

So my production company, Hodges Film, I take on smaller projects that I work on throughout the year.

This past year, I I was very limiting to that.

I wanted to solely work on this documentary.

Scott Benner (41:29)

Mhmm.

Rebecca (41:29)

I obviously get paid for for the documentary.

Scott Benner (41:33)

Yeah.

Yeah.

Rebecca (41:33)

I have a a line budget item for myself.

But, hopefully, when this documentary gets seen by people, then this will propel another documentary.

My goal is to continue to continue to work on feature film.

And then I think everybody takes commercial or PSA small smaller work in between, but feature film is where I wanna live.

Scott Benner (41:53)

Got it.

That's awesome.

And you're and you've been doing this for how long now?

How I don't know how old you are.

I didn't ask you.

Rebecca (41:59)

2016 is when I started my own company.

I got into the industry in 2012.

Scott Benner (42:06)

Okay.

Wow.

That's a long it feels like a long time.

How did you find the nerve for it?

Because I recall feeling like the where I grew up, no one did the thing.

Scott Benner (42:17)

Like, so when I was young and people was like, what do you wanna do?

I'm like, I think I could write a movie script.

People would look at me like, you might wanna just get a job in a factory and shut your mouth.

Yeah.

There was no one around me to, like, say, oh, I know a guy who did that to kinda expand on that for a second.

Scott Benner (42:30)

Like, my son played baseball right through college, and I think he thought that was possible because he knew other people who played baseball in college.

And he also knew a guy who played professional baseball, so the whole thing seemed reasonable.

Rebecca (42:42)

Mhmm.

Scott Benner (42:43)

You know, whereas when I started talking about it, people were like, no.

That's not a thing that's not a thing people do.

Was it your enthusiasm and what you found at college that made you incapable of ignoring it?

Was it a little bit of that mixed with your parents being like, oh, thank god.

We did not think you were gonna be a good doctor?

Scott Benner (43:02)

Or, you know, like, what was by the way, they didn't say that.

I I added that.

What made you feel like it was possible?

Rebecca (43:08)

Yeah.

I think I'm just a very passionate person.

Mhmm.

When I when I get my hands on something that I wanna do, I'm full steam ahead.

So I think that it really just took me and I'm a firm believer that if you're doing something that you love, that, you know, everything else will follow.

Rebecca (43:26)

So

Scott Benner (43:27)

Oh, okay.

Rebecca (43:27)

It didn't really matter to me that I was going into the arts because I was like, well, I'm gonna make something amazing.

And, you know, everything else, insurance will come after.

Scott Benner (43:35)

And you did have a little bit of like, said your father was a professional.

Right?

So you there was some comfort.

Not comfort.

There was some security there.

Scott Benner (43:42)

I mean, I'm just saying I was broke.

Like, I I I was I had a really terrible job.

Yeah.

Rebecca (43:47)

I wouldn't say that because No?

I was broken, actually, as much as it was nice of my parents to say, you don't wanna do that.

My dad passed away when I was 22.

Oh.

And my my mom I you know, this is going deep now.

Rebecca (44:02)

But my I moved out of my mom's house when I was 14.

So it's kind of like a a broken home.

And maybe that's one of the reasons why, you know, I had to grow up at a very early age.

And so, you know, helping to tell these stories that can that can, you know, impact people, and I can do my part in the world of of bringing positivity and and making the world a better place.

I think that there's a lot of deeply ingrained feeling in in me of needing to help others, I think, because I I needed help myself, and I had people that gave that to me.

Rebecca (44:37)

And so I wanna be that person for other people.

Scott Benner (44:39)

Oh, that's awesome.

Also, I think it would be wrong of me to point out that I have now done the thing that I've been describing for the whole hour by getting you to say something deeper that was real, and and that was nice.

Look at me.

I'm really good at this.

That's all I wanted to say, Rebecca.

Scott Benner (44:53)

There's no way in hell you thought you were gonna talk that today when we started recording this.

Right?

No.

Tell the people how good I am, Rebecca.

No.

Scott Benner (45:03)

I'm just kidding.

Rebecca (45:03)

You didn't.

No.

You're amazing.

Scott Benner (45:07)

People like, do people cry on the podcast all the time?

I'm like, no.

But I know they say a lot of things they didn't expect to

Rebecca (45:11)

say.

Yeah.

Scott Benner (45:13)

Just because there has to be a reason for that.

Just the same way I mean, listen.

It's pretty obvious.

Right?

You see a lot of people, who grow up with type one diabetes get into medicine, or you see Elizabeth who is absolutely propelled to help people because she needed somebody to help her.

Scott Benner (45:29)

And, you know, and you are trying desperately to tell people stories, and I recognize that because I'm doing the same thing.

Right?

Like, I grew up very poorly, in case you're wondering, Rebecca.

You know, my parents were divorced when I was 13.

I ended up raising my brothers.

Scott Benner (45:44)

You know, my mom was working most of the time.

We were completely broke.

And when I talk to people, all I wonder inside, always I'm also adopted in case you needed, like, a a double whammy on this.

Everything I do when I'm speaking to somebody is, like, the the kernel of the seed of the idea behind what I'm thinking is, why are you doing that?

Like, why do people do those things?

Scott Benner (46:09)

And not good or bad, by the way.

Anything at all.

Like, what is motivation?

What motivates somebody to do something?

What allows them to ignore common sense and become a filmmaker?

Scott Benner (46:19)

What ignores them to ignore common sense and treat a child poorly?

Everything in between.

Like, I am utterly fascinated basically about why did someone abandon me.

And, like, why do people do what they do?

And that's what I do when I talk to people.

Scott Benner (46:34)

I just try to figure out where their motivation comes from and where the motivation came from for the people surrounding them that, you know, in essence, were the, you know, the ones who propelled them in the direction their life took them.

So I just I'm very interested in why people do what they do all the time.

But probably any reasonable Freudian therapist would tell you it's because I'm adopted, and then my adopted family got divorced.

Right?

Pretty simple.

Rebecca (47:00)

Well yeah.

I mean, your identity your identity has shaped you know, the identity of now your podcast of how you're reaching out to people.

Scott Benner (47:09)

So Yeah.

Rebecca (47:10)

For it and for it, I think that searching for that nugget is it's an important nugget to look for.

Scott Benner (47:15)

Well, more importantly, I think, at some point, I was like, well, I can't just keep doing this for myself.

Like, I pretty much have my answers.

I know where I'm at.

So, like, how do you take that then, like, combined skill and use it for good, basically, which is what you're doing, by the way.

It's what Elizabeth is doing.

Scott Benner (47:31)

It's what you're doing.

It's what I'm doing.

It hopefully, what a lot of people are doing.

And and maybe one one day, we'll all get to see it, you know, come to fruition somehow.

The Global Race for a Cure

Scott Benner (47:40)

What would you say your feeling is about the chase for a cure, like, an outsider to it?

Does it feel hopeful?

Is it interesting?

Does it feel tangible?

Does it feel like you'll see it in your lifetime, or is it just great to know it's happening?

Like, what information have you pulled together on all that so far for yourself?

Rebecca (48:01)

So I am incredibly optimistic, and I am one of the people who continues to believe that the cure is five years or closer away, especially with the transplantations, everything that's happening right now.

I just did a tour at the DRI recently, and I got to see the three main avenues that they're working on in their search for a cure.

Scott Benner (48:26)

Mhmm.

Rebecca (48:27)

And I was blown away.

So I feel like it's right around the corner.

And in my talks with doctor Camilo Ricordi, he continues to tell me that this is a very, very exciting time to be in this search, but there are a lot of things that he and the the community are up against.

He was actually just talking about how The United States is not competitive globally because of the standards that they're facing here.

And so they have to treat everything like they're clearing it by the FDA instead of instead of just being able to research and and push everything that they're working on forward.

Scott Benner (49:02)

I just interviewed doctor Wachowski the other day Yes.

From Chicago.

And, yeah, he was talking about all this as well.

Rebecca (49:09)

So it feels it feels like a very exciting time.

And I'm not the only one thinking that.

I think a lot of people feel that way.

Scott Benner (49:16)

Yeah.

Rebecca (49:16)

But Elizabeth often tells me, you know, calm down a little bit, Rebecca.

We've all been waiting for this cure for a really long time.

So I try to limit my excitement because I feel like I'm I'm very invested now.

You know?

I want this cure for all of the people that I know who have type one, and so I hope that I see it in my lifetime.

Rebecca (49:37)

Again, I'm very optimistic that it's it's close.

How do you feel?

You have somebody that

Scott Benner (49:42)

First of all, Elizabeth is probably on her fifth or sixth five year journey with the cure is coming, I would imagine.

And I would tell you that I felt prior to talking to doctor Wieckowski and and even more so after speaking to him that, you know, there are regulatory hurdles.

There are hurdles of, you know, even being able to source islet cells.

There's hurdles about how many people can actually do the procedure, who the hell is gonna pay for it.

Rebecca (50:09)

You know,

Scott Benner (50:09)

how do you administer the medication that comes afterwards?

You know, is it really reasonable to ask somebody to do something like that every twenty one days?

And in the case of his research, you know, are they gonna have to make the the anti rejection meds something you can take at home eventually?

I think that when I hear you talk about it, I agree with you that, like, it feels like they're on the precipice of something.

And yet that I think the reality of life and commerce and everything else, even if they had it today, even if somebody stepped up right now and said, here it is.

Scott Benner (50:44)

It is the thing.

I have it.

I don't think that means that my daughter's getting it for twenty years maybe.

Rebecca (50:50)

Right.

Scott Benner (50:51)

And then, you know, and that makes her 50.

So does she care by then?

Like, I don't even know.

It's one of those things that I think I don't know how to explain this exactly, but I think it'll exist at some point, But it won't be for the people who are paying attention to it right now in mass.

Maybe some of them, probably some of them, not all of them.

Scott Benner (51:11)

Mhmm.

But there might be a day in the future where it just isn't as prevalent as it is now because of the thing that was learned and grew and and, you know, changed and and reformatted itself over and over again till it becomes what it ends up being.

And I don't know how long that takes.

Yeah.

You know?

Scott Benner (51:30)

But that feels like it

Rebecca (51:31)

is one of the biggest biggest questions is when there is a cure developed, how long does it take to get from high end research out to

Scott Benner (51:41)

Everybody.

Rebecca (51:42)

Your everyday Jill?

How how does that transition happen?

How many years does it take for that to happen?

And and that's a that's a real journey right there.

Scott Benner (51:50)

I sort of separate the medicine and the research from the reality, and I think and then I start thinking about, like, well, I look at how the world works, and we can't get my garbage collected on the right day.

Like, we're gonna do this.

Like, it's crazy.

That's why I think it's just a thing that slowly matriculates until it doesn't exist anymore.

And then one day, people just don't even realize it was ever a thing and but you can't quantify the day it happened.

Scott Benner (52:15)

I don't think there's gonna be a a cure day.

I don't think there's gonna be a line people get into, and they come out the other side of the factory, and they're okay.

I think it's just gonna happen slowly.

It'll probably start with the sickest people who can tolerate it.

And then or and, also, I'm gonna assume some of the richest people.

Scott Benner (52:31)

And then it will, you know, hopefully spread out over then, maybe eventually be covered by insurance in a way that, you know, you get diagnosed with type one diabetes and someone instead of sending you to the hospital, they send you somewhere and they go, oh, we're just gonna give you some of these cells and give you a little of this juice and you're all set.

Like, I don't know.

You know?

Yeah.

Yeah.

Scott Benner (52:51)

But I love your attitude.

So seriously.

No.

Seriously.

Rebecca (52:54)

This reminds me of Elizabeth was just recounting a story that she was told.

I can't remember who told it to her.

But the gist of it is that there was a boy in Africa when he urinated, their ants would come to the urine.

Mhmm.

And it was because of the sugar in the urine.

Scott Benner (53:15)

Sure.

Rebecca (53:16)

And so the the diabetes test is the ants come to your urine, and then that means that you have type one diabetes.

And for them, it's still a death sentence.

And so the you are almost like the sooner that you pass, the the easier it is for them to get help to other people instead of caring for you.

Okay.

So very morbid.

Scott Benner (53:41)

Yeah.

Rebecca (53:41)

But it's like you are taxing our health care system with a disease that we don't have a cure for, and so you're prolonging the inevitable.

Scott Benner (53:51)

Okay.

What a way to think of it.

Jeez.

Rebecca (53:54)

When you hear that and it it puts this disease into a different light.

So I hope that, you know, whether it's a cure that comes around, you know, no cure day or what, I hope that the development of of getting to the cure, like you said, maybe there's something in between that can that can slow down, that can I don't know?

Something in all of these instances that can can help people who are in those kind of situations that aren't lucky enough to live in The United States, that aren't lucky enough to have access to to care.

So that's kind of my hope in in all of these situations is that we can get something to people who don't have immediate access to to, you know, the greater health care loop.

Scott Benner (54:40)

You know how I feel about it?

I just realized you know that scene in the Incredibles with the little boy in the driveway?

And mister Incredible goes, what are you looking at?

He goes, what are you waiting for or something like that?

He goes, I don't know.

Scott Benner (54:50)

Something amazing.

That's how I feel sometimes.

Like, I don't I don't know what's coming exactly, but, I'd like it to be something amazing.

You know?

Like, I think it's kinda it's a little like, it's academic to sit around and pontificate about what you think it might be or how it's gonna look or whatnot, but I don't really care.

Scott Benner (55:07)

I just as long as it's something beneficial for people and it feels like a leap, that would be nice.

You know?

Yeah.

Like, give people some hope and real momentum.

Just a leap, I think, would be awesome.

Supporting the Film and Final Thoughts

Scott Benner (55:18)

I don't even care what it looks like.

Yeah.

I I don't understand what people argue about.

I mean, I I I'll help people make the point if they come on the on the podcast, and they're like, well, that's not a cure.

Like, doctor Wikowski right there.

Scott Benner (55:29)

He's got 12 patients.

He put islet cells in their liver.

He gave them something called tegoprobar, and they're they seem like they're okay.

Right?

And then there are people like, well, that's not a cure.

Scott Benner (55:39)

And I'm like, yeah.

I I mean, is that what you wanna argue about?

Like, you you know what I mean?

Like, they don't need they don't they don't need insulin anymore.

It's pretty awesome.

Rebecca (55:46)

Right.

Scott Benner (55:47)

You know, they're not gonna have a low blood sugar in a movie theater or crash their car or something like that.

There's a lot of, you know, value there.

I take your point.

It's not a light switch.

They didn't just flip the switch and go, hey.

Scott Benner (55:58)

No more I know that's how people's minds wanna think about it.

But Yeah.

I would always ask those people, why don't you go sit down and Google how many things has mankind cured?

Because you're gonna find out that it is a shockingly short list.

I don't think we're at that place yet.

Scott Benner (56:12)

Like, I don't think we're advanced enough to just throw a light switch and change how your body does something.

We don't even understand inflammation.

You you know what I mean?

Like, it's you know?

Anyway, be happy for whatever you got.

Rebecca (56:23)

I think everybody's waiting for something amazing and waiting for that leap.

And I don't feel like that leap is far away.

Scott Benner (56:30)

Yeah.

No.

I'm glad.

I I'm glad you feel that way, and I'm glad you understood what I was saying.

I am really disappointed.

Scott Benner (56:35)

I couldn't remember the quote from The Incredibles, but, you know, I got a lot in my head.

It's hard to remember.

Rebecca, where can people go to learn more about the film?

Rebecca (56:46)

Beyondthediagnosisfilm.com.

That's the website.

We're on Instagram.

We are on YouTube.

We are on Facebook.

Rebecca (56:55)

You can reach out to myself, which is Hodges Film.

You can reach out to Elizabeth Forrest at touched by type one.

But, yeah, I think that we want people to to get involved and to follow along with the story.

And when it comes to supporting the film and going out and seeing it, going to premieres, that's we want to drive this through the community and get this movie seen.

Scott Benner (57:19)

Yeah.

What are you asking people to do right now?

Anything?

Just start following so they know more?

Do would you like them sharing stuff or telling folks?

Scott Benner (57:26)

Is there something they could be doing to help them tell you?

Rebecca (57:29)

Follow, share.

We have a platform for donations, which you there's a link to on the website.

But we are in phase two of filming, and we're still looking for funding to to go into, post production.

But I think mainly getting in there, sharing, talking about it, and just staying in touch.

Scott Benner (57:51)

Yeah.

Yeah.

Hey.

Listen.

Everybody remember, Elizabeth is running a it's a charity.

Scott Benner (57:56)

It's yeah.

Touched by Toughbun is not a it's not a money making business.

It's a thing she does to try to help people live easier with type one diabetes, and she's raising money to give to, those out there looking for a cure.

She's hustling her, her butt off.

So

Rebecca (58:10)

She is hustling.

Scott Benner (58:12)

Rebecca, I really appreciate you doing this with me.

And, also, I appreciate you coming on a half an hour early when I bugged you late last night and said, you do this earlier today?

So thank you very, very much.

Rebecca (58:20)

That is a okay.

Scott Benner (58:21)

Awesome.

Hold on one second for me.

I'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system, which of course anticipates, adjusts, and corrects every five minutes 20 four seven.

It works around the clock so you can focus on what matters.

The Juice Box community knows the importance of using technology to simplify managing diabetes.

Scott Benner (58:48)

To learn more about how you can spend less time and effort managing your diabetes, visit my link, medtronicdiabetes.com/juicebox.

I'd like to thank the blood glucose meter that my daughter carries, the Kontoor Next Gen blood glucose meter.

Learn more and get started today at kontoornext.com/juicebox.

And don't forget, you may be paying more through your insurance right now for the meter you have than you would pay for the Kontoor next gen in cash.

There are links in the show notes of the audio app you're listening in right now and links at juiceboxpodcast.com to Kontoor and all of the sponsors.

Scott Benner (59:31)

A huge thanks to today's sponsor, AbleNow.

AbleNow offers tax advantaged Able accounts for eligible individuals with disabilities.

If you or your child lives with diabetes, you may qualify because of ongoing medical needs.

With Able Now, you can save for a wide range of disability related expenses without affecting eligibility for certain disability benefits such as Medicaid.

And thanks to recent federal law updates, more people are eligible than ever before.

Scott Benner (59:58)

Learn more and check your eligibility at ablenow.com.

You spell that ablenow.com.

There's links in the show notes and links at juiceboxpodcast.com.

I can't thank you enough for listening.

Please make sure you're subscribed or following in your audio app.

Scott Benner (1:00:15)

I'll be back tomorrow with another episode of the juice box podcast.

If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group.

Juice Box Podcast, type one diabetes.

But everybody is welcome.

Type one, type two, gestational, loved ones, it doesn't matter to me.

Scott Benner (1:00:35)

If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook.

The Juice Box podcast is edited by Wrong Way Recording.

Wrongwayrecording.com.

If you'd like your podcast to sound as good as mine, check out Rob at wrongwayrecording.com.

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