#1935 My Body Beeps
My Body Beeps
Katie Lockwood is a therapist and author with cystic fibrosis and CF-related diabetes. She writes picture books that put kids with medical conditions on the page — including one about growing up with diabetes.
Jump to a moment
- CF-related diabetes is its own thing. Katie was diagnosed with cystic fibrosis hours after birth; over time it destroyed her pancreas, so she now wears a pod and CGM. She describes CFRD as looking partly like type 2 and, in most day-to-day ways, like type 1 — though without the same ketone risk. She takes around 20 medications a day and sees many specialists.
- The old advice collided with the new diagnosis. Because people with CF often struggle to keep weight on, Katie was raised on ice cream and Chinese food — and when diabetes arrived, the early guidance was essentially “keep eating that, just add insulin.” She talks candidly about how the goals, and the life expectancy she was given, have shifted dramatically across her life; born when it was around 18, she just passed the number she grew up expecting.
- She turned her experience into books. A therapist who supports families affected by disability and illness, Katie writes picture books that give kids authentic representation. My Body Beeps is about growing up with diabetes and shows a CGM and a pod on the page; others cover surgery and rare conditions. Each runs roughly $10,000 to make; she works for free and crowdfunds so she can give many away.
- Her daughter has Mobius syndrome. Katie's older daughter was born with a mild form of Mobius — affecting the cranial nerves that move the eyes and drive facial expression. Unable to find a book about it, Katie wrote one, Why Me Mama, with an owl as the main character (owls turn their heads instead of moving their eyes). The real children she connected with became the story's other characters.
- Representation is the mission. Katie didn't grow up seeing herself in books, and wants kids dealing with “extra stuff” to see themselves on the page. She invests in professional illustration, editing, and design so self-published doesn't mean lower quality, partners with foundations and camps to distribute copies, and is now working on a sequel to My Body Beeps set at diabetes camp.
- Katie Lockwood — Acorn Cottage Press — Katie's books (My Body Beeps, Why Me Mama, My Surgery Day) and how to reach her: acorncottagepress@gmail.com.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed — the free starting point mentioned in the episode.
- Juice Cruise 2027 — The third annual Juicebox community cruise, booking now.
Every word of the conversation
Cold open & sponsors0:07
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CF, and a pancreas it destroyed2:07
Hi. I'm Katie Lockwood. I am a therapist, author, educator, and I have cystic fibrosis and diabetes.
Katie, type one.
And I'm coming from Cape Cod.
Oh my goodness. You have type one?
I have CF related diabetes.
Oh, explain.
So cystic fibrosis is a genetic condition that I was born with, and it affects all of the organs in my body. And one of the things it did was destroy my pancreas. So I now have insulin dependent as well as so I wear a pod and a CGM.
What else does it do? Is it is it out there, like, running roughshod through the neighborhood with a bat? Wait. What's going on?
For many people, it does. So I was diagnosed a couple hours after I was born because I had some GI issues. And one of the things is that my body doesn't process fats appropriately
k.
Including vitamins that are fat soluble. Mhmm. So I take about 20 different medications each day, have multiple treatments. I'm seen by many specialists. Primarily, the the biggest impacts are on the lungs and the digestive system.
Do you have any issues with your lungs?
So I'm relatively very healthy, but it is a lifelong chronic condition. And so I can get so I typically will catch colds and things a little easier than others. It will take me a little bit more to get over them and to kinda get always try to keep up to that baseline.
Are you telling me you don't worry about global warming or you just get sick more often?
I get sick more often.
Okay. Okay. Alright. I I appreciate you laughing at my fairly morbid joke
four minutes ago. I I did grow up with a chronic illness.
Oh, okay. You you
Several of them.
You know how to swing hands on this, I would imagine. Brothers and sisters?
I do. I have one younger brother. He's six years younger than me.
Does he have any issues?
No. He is very healthy and surfs and climbs and all of the things, but it was a decision that my parents had to and his parents too, I guess, had to kind of navigate through when they had me and if they were gonna continue to try to continue their family.
Yeah. They're a glutton for punishment, those people. I mean, honestly, being like, joking aside, like, can you I mean, do you do you have children?
I do.
Yeah. Can you imagine giving birth, and then they're like, where's the baby? And you're like, actually, hold on. Let me tell you a couple of things, and that's what you get told?
Yep. Yep. It's like, no. We don't have time to weigh and measure her. We're gonna ship her next door to Children's.
My goodness. Have you ever talked to your mom and dad about it?
Yeah. Yeah. Especially my mom. She raised me as such a wonderful advocate and always pushed me to kinda do everything I could possibly do
Mhmm.
But with also some slight overprotective tendencies.
Yeah. Yeah. She talked about the impact on her ever, or does she keep that from you?
I think to an extent. We've talked I'm I'm I'm a couple specialists as well in my therapy, and we have had several conversations about how much it can impact the family and the couple and kind of how that impacted her relationship with my dad.
Oh, did she have to get rid of him?
Yes. Yes. Just threw him off the boat.
I would imagine. She's just like, that's enough. I'm voting you off the island now. It's enough. How long did they make it?
They waited until my brother graduated high school.
Oh, that's very Caucasian of them.
Very, very convenient for me.
For you? Why?
Yeah. Well, they waited until I got married too, so that was helpful.
Oh, that's very nice. And then did they, like are they are they, like, in a a lifelong blood feud? Do they get along? How is org?
You know, divorce is never pretty, but they actually do an exemplary job Very nice. With at this point. They're at every holiday, every event for my children, so I really couldn't ask for more at this at this stage.
That's very nice. It it is the story that they that that the illness is I mean, how do they tell it? Are they hanging it on you, I guess, is what I'm asking? Or what what
is it?
No. Think that's more a more nuanced
Yeah.
View of it than I think that that did have an impact, though, on they had a little one with something really serious, and they had very different approaches on how they were gonna handle that
Yeah.
Or if they were able to process it. And so I think my mom took on more of the caregiving and the medical burden. Mhmm. And that that impacts you over time.
Is it difficult on you to know that that happened?
No. But I I can see as a parent now and in a very happy relationship with my husband, I can see how it easily can become that. And so it's something that I've always been really mindful of.
Okay. Very well. It's it's interesting. I appreciate you sharing that. I'm I'm assuming that's not what you thought you're gonna be talking about in the first five minutes.
But I'm
a fairly open book. So wherever you go, I'm good.
I do really appreciate that. Okay. So you grow up do you do you call yourself type one, or do you use is this feel like a you know, like, when people have three c, for example, they're like, well, I don't really have type one diabetes. I had a surgery. And then, like, how do you think about it?
CFRD: type one, with its own rules7:42
So they call it CFRD, so cystic fibrosis related diabetes. Fancy. Yeah. Yeah. My understanding is that it kind of shows up in some ways like type two and in many ways like type one.
Like, I don't seem to have an issue with ketones.
Mhmm.
But in many other areas, it it's very similar to a type one diagnosis.
Yeah. So when when you have to tell somebody, do you just say I mean, do you give them the whole thing, or what do you tell somebody in, like, casual conversation?
I think I just kinda say cystic fibrosis and diabetes.
Gives them the idea that there's been a car crash somewhere, and they go Yeah.
There's a lot going on.
Yeah. Yeah. They go, okay. And they they don't ask a lot of questions after that, I imagine.
Yep.
Yeah. Cystic fibrosis probably scares the hell out of people in general conversation. Right?
Yes. Yeah. I think we'll if they've never heard of it, it's like, are you contagious? It's the first question, which I am not. Although it is a it can be really scary, and there's certain germs that people with CF have that can transmit to other people with CF
Oh, wow.
Which is atypical, I think, in just kind of disease territory.
Mhmm. And how would you know?
You would only know if someone told you.
Yeah. I was gonna say.
Although I was at a meeting once and someone's coughed, and I said, I'm so sorry to, like, ask you a question, but is do you have this? And she had something very similar. And I was like And you locked it in fascinating. We're now Facebook friends. We try not to be in the same room.
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Whoo. Thirty minute warm up time. That's right. From the time you put on the Dexcom g seven until the time you're getting readings, thirty minutes. That's pretty great.
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Links at juiceboxpodcast.com to Dexcom Omnipod and all the sponsors. But you can remember it. Dexcom.com/juicebox. Check it out. You can tell by their cough because it sounded like a cough you had?
Yeah.
That's fascinating.
Yeah. Yeah. It's really interesting. It's No kidding. It's also it's hard because when I was a child, they did not have the safety protocols that they do now.
The germs, and the end of CF camp11:17
Mhmm. And so I became very close to several people, and, unfortunately, most of them have passed away. So that was a a big part of my adolescence and kind of journey. But now you're not allowed to be within six feet. And so they kind of stopped a lot of the fundraisers that I grew up with that were really a joyful experience.
Yeah. I was gonna say that that puts a damper on the get togethers for sure.
It definitely does.
No camp, I guess.
Oh, yeah. That's a big one that used to exist.
Oh, no kidding. Yeah. When did they find this out? Like, what year did did what year did somebody go
I was alive Yeah. Because they had some kind of camp. I was too young to do a camp by myself. Mhmm. But I remember we went something with my parents when they had, like, activities for the kids to do together, and then the parents had different support groups.
And then something happened at an older camp where one of the bad CF germs passed over from one patient to another, and then the person who got it passed away.
Jeez. In that time, like, didn't take long for it to happen.
Yeah. It didn't take long. And so and then it was it's just too much because then the other person would did not pass away. Right? Yeah.
But that that was the end of the CF camps.
That was that. Yeah. Now we just just mail you a check. Yeah. Yeah.
We don't need to we don't need to see you. Thanks. Well, that's really that is really by the way, people should really appreciate how good I am at this. I got a lot of interesting information out of you in just a couple of minutes on something that they didn't think they were gonna learn about. Yeah.
Yeah. Yeah. Okay. So but let's let's jump to it a little bit. Growing up with diabetes, were using an insulin pump.
Did you get a CGM at any point? What do you you said you have it now, but at what point did that stuff happen?
Ice cream, insulin, and shifting goals13:07
I was a teenager.
And how old are you now? I'm sorry.
I'm 38.
38. You were a teenager. You got a pump. Did did it make things easier?
I think at that point you know, I grew up with CF, so adding the diabetes was really hard for me. And I think a lot of it is intertwined because with CF, typically, people are underweight and, you know, struggle to keep on weight, things like that. So I was raised on, like, ice cream and Chinese food.
Oh.
And then adding, you know, the the failing of my pancreas to continue kind of shifted a lot of my eating habits and kind of how I need to take care of myself.
Yeah.
But the CF community really wasn't on top of that. They kinda were still in the, no. Eat all of the ice cream still, but now give yourself insulin. So but the the goals at that stage, I think, were different than what they are now.
Uh-huh.
And the life expectancy was very different. So I'm sorry. CF goals. Complex. CF goals?
Yes. Yeah.
Oh, the goals back then were what? Like, have a bunch of ice cream die early?
Yeah. Pretty much. Like so when I was born, the life expectancy was around 18.
Get out.
And when I was a teenager, the life expectancy was 38. So I just celebrated my, like, life expectancy birthday this year.
Yeah. I guess you're done. Well, I mean
I know. And now I need to work on living to 80. So
Have they changed that number? Or is
It has. Luckily, it just keeps rising as I get older. So I figure
following you.
It's just following me, so I just have to just keep going with it.
What what is the new age?
So it changes depending on when you were born. So
I see.
Currently, maybe somewhere in the forties. But if you were born now and had axe have access to the newer medications, Mhmm. They're projecting, I think, somewhere in late forties, fifties. Oh my god. Expect that to continue to go up.
Hey. That's that's it that's the thing you live with every day.
Yes.
Yeah. How how do you deal with that?
So a few things. I think I have a pretty positive attitude.
Mhmm.
I was raised to not live like I was going to die at those ages. I was five when my mom told me that I had to go to college because I need to get good health insurance.
And so paying for this for the rest of my life, kids. Let's go.
Yeah. Yeah. And then but you know what? When I got my second master's, she was like, do I have to go to this graduation too? Like, mom.
Did this.
Not me. Yeah. Yeah. Yeah.
Yeah. This is your fault. You can buy me dinner.
I was I was planning on hanging out in a parking lot and dying when I was 18. So you're you're the one that made all this happen. Yep. That's really interesting. Do you are there any people that can found those age survival ages or not really?
That go past them?
Yeah.
Yes. Yeah. There are. There are some people in their seventies and eighties. There's also been a lot of people that are diagnosed later in life.
Okay. Especially men when they're trying to
have
children because they they are missing their band's deference. And some people are are very mild symptoms. Some people maybe struggled with, you know, asthma and, like, constant sicknesses and then just didn't have a great doctor.
It just kinda piles on a little bit. Yeah. Wow. You said did you say I think you misspoke and said vas deferens, which threw me off for a second.
Oh, what is it? Vas deferens?
It's vas. Yeah. Yeah. Like vas deferens. And I know that from eighth grade biology class.
Thank you, everybody.
That's that's good. Yes.
Last day of eighth grade biology, I stole a stapler off of my teacher's desk because I didn't like her and kept it like a trophy for many years.
You you watched the office of The Office Space?
Oh my goodness. That's I was way before that. Don't worry. Okay. They might have got that from me.
Okay? Yeah. Yeah. I yeah. Yeah.
No. I I did that in front of her, by the way. It's one of my proudest moments. She was I'm not I I wish I was joking. She she was seated at the desk, and while I was talking to her, I took it.
I've never been so proud of my life.
And you you got out with it, so that's
pretty awesome. My it's it's it's a fantastic stapler. I kept it forever and ever. It was it was literally there just to remind me that anything is possible. So my goodness.
Yeah. Yeah. Yeah. And you cannot make a baby without vas deferens. That's gonna be tough because that's that's where the little sperms go.
You know what I mean. You've got it all figured out by this point. Wow. I appreciate you explaining all that to me. I really do.
Yeah. Of course.
Yeah. Yeah. So were your outcomes with your diabetes not great a one c wise because of the way you were eating and probably how the understanding of diabetes was back then, or do you even know what your outcomes were back then?
Outcomes, and advocating off insulin18:32
You know, I should really ask my doctor. So I've had the same doctor now for about fifteen years. I'm sure it's somewhere in the records. They weren't my numbers weren't terrible because they knew that diabetes is a pretty well linked thing to CF, it was something that every time I had blood work for my CF appointments, they would check for.
There were
no big threats about that. Yeah. So there wasn't, like, a huge period of time where we didn't know.
Yeah. What was your understanding of what you were doing for your diabetes back then? Just were you counting carbs, or how were you handling it?
Yeah. I was counting carbs and then just kinda learning more about the different equipment, things like that. I think they they wanted to put me right on insulin, and I think there was a little bit of a period where I advocated to try some of the medicines because I also didn't never was really struggling with being underweight at that at that stage. So I found that their argument for not for for just kind of hopping on insulin immediately wasn't sufficient for me at the time. And I did I was able to with, I think, glipizide and something else.
You made it for a little
bit? Hone a a bit. A couple years.
Okay. When
did CGM Which gave me some time to kinda, like, process
I was gonna say, right, to get your head around the whole thing. Yeah. When did CGMs come into your life? At what age?
My early twenties.
Okay. It's just it's half your life then?
Yeah. Almost.
And and then do you become a therapist because of your situation?
I think it definitely impacted kinda my trajectory. I originally got a degree in public relations and journalism.
Mhmm.
And then I only applied to nonprofits because, apparently, I didn't wanna pay any bills. And then I went through I decided I wanted to work in the schools and work with kids. So I did teach for America and taught special ed for a couple years. And at the same time, I got a master's in counseling.
Very nice. Do you see people virtually, in person? Do you have a, like, a practice that you that you're supporting?
So I am currently I work part time for a private practice doing telehealth.
Mhmm.
And I specialize in supporting families that are impacted by disabilities and medical conditions. So I see kids with type one. I see parents that are raising children with different diagnosis. Also work for a school full time that is also remote, which is great, but I used to work in the schools in person before COVID.
Must be fulfilling. No? Yeah. Yeah. That's lovely.
Do you
feel like you're helping yourself while you're helping them?
I do. I think kind of the biggest, like, side thing that I've done that's really helped me has been writing books. Mhmm. That's really felt really like, my brain did a lot of work processing and being able to support others through that process.
Becoming a therapist who writes books21:44
Multiple books. What kind of books?
Yeah. So I write different books about differences and medical conditions. The one I think that's probably the most topical for for you is it's called My Body Beeps.
Okay.
And it's about growing up with diabetes.
Alright. And then from your is it a a children's book? Is it a
It is. Yeah. It's a picture book.
Alright. Oh, picture book. Nice. And then but you do it for other disease states as well?
Yeah. I'm working on creating a little series, but I also have released one about preparing kids to have surgery. So my surgery day.
Oh, I'm looking right now. I see MyBodyBeebs. That's your name. I I got the whole thing worked out here.
Yeah. And that's me as a cartoon.
Did you get somebody to draw it for you, or did you do it yourself?
Oh, yeah. I don't have those skills. You don't have those skills. I've I've been able to partner with some amazing illustrators.
Yeah. Oh, this is lovely. Look at you. How long have you been at this?
I started writing in '21.
Okay. Five five years or more.
Yeah. About five years.
You've been kind of prolific here.
I'm working on it.
Is this a a labor of love? Is it, like, a legitimate business? Like, do know what I mean? Like, what we kids book.
So it's it's definitely more of, a mission focused project. Yeah. Authentic representation of disabilities is not very common. And I think especially the authentic part and traditional media, we don't we don't get to see ourselves. And kids that are dealing with extra stuff really, really need to see themselves on the pages and in the world around them.
K. Do you get to hear back from people that have read the books? Are you getting any feedback about them?
Yeah. Yeah. I hear from people all around the world, and I see pic I get to see pictures of them holding, like, the doll I had made and the books. And I get clips of them bringing the books to school to read with class or sending them to the school nurse's office depending on kinda which which title it is. I typically do a, like, a crowdfunding campaign for each project because each book cost me a maybe around $10,000 to create.
So those the funds that come in help me pay the illustrator, editor, book designer. I work for free, and and then I I'm able to send people packages kinda once it's done.
What's the draw of spending the I mean, do you I guess the question is, do you make that money back, that initial investment? And if not, then what's the draw of just not keeping it online?
So for the offset print run, a lot of a lot of the expenses kind of would need to happen regardless if it's just online or not.
Mhmm.
So if I wasn't gonna do the print run, it would save me a few thousand, but it's still an over $56 investment for each one.
So mostly is that mostly artists and Yeah. Typesetters, stuff like that?
Yep. The illustrator and then editing and book design.
Yeah. Wow. That I mean, when you when you don't think you're gonna, like, you know, 10 extra money, that's a really nice thing to do. It it really so what are you getting out of it? The you must be getting something awesome out of it.
I feel like a lot of it's, like, not definable, but I didn't grow up with representation around me. Mhmm. There wasn't characters or, you know, anything that showed who I was as a kid. And then my daughter was born with her own rare diagnosis, which was a shock.
Oh, no kidding.
Yeah. And so we I looked for books because here I am, a therapist, an educator, disabled, and I couldn't find anything about her rare condition. And I was like, oh my gosh. So that's what made me do my first my first project.
Her daughter, and Mobius syndrome25:56
And this is something completely your your child, this is something completely different than what you have? Yes. Would you share?
Yeah. So she has a mild form of Mobius syndrome, which I had never heard of, but it's the impact of the sixth and seventh cranial nerves.
Oh, I thought that was a Spider Man character. So thank god you got deeper into that. Yeah.
Yeah. Yeah. I do I saw a boat recently that had that on the side. I was like, I had just, like I think there's, a graphic the graphic novel.
Like, I don't think you guys understand that word. Yeah.
Yeah.
So wait. It it seriously, explain that a little slowly. What is it now?
Okay. So to have the true definition of mobius, your sixth cranial nerve needs to be impacted. That is when we take our eyeballs and we move them left and right.
Mhmm.
That nerve, its only job is to move your eyes left and right.
Really?
She was not born with that one.
Is that like a deletion kind of thing?
They say it's not genetic, and we've done all of the testing, and they don't know why it happens. My theory has to do with, like, some kind of blood flow issue at some point, but I'm not I'm not the expert as much as I think I am.
Is it is it incredibly rare? Yes. Is it more is it
more or less than rare million.
Than CF?
Yeah. Way rarer, which is fascinating because CF is a rare disease.
Yeah. And it affects males and females equally, it says here.
Yes. And there can be up to 20 different things impacted, including limb differences, a lot of like, hypotonia, it's a low muscle tone, hearing, vision, like a whole bunch of stuff that can be a part
of it. Wow. Hey. The numbers that came back to me fibrosis excuse me. My lip literally stuck to my other lip.
Occurs in roughly one in three and a half to four thousand births in The US. It says about forty thousand Americans are currently living with it. Mhmm. And then the Mobius is one in every fifty to two hundred and fifty thousand people. Yeah.
That's really something. My goodness.
And I think there is some issues with people getting appropriate health care and getting appropriate diagnosis.
On the Mobius.
With the Mobius. Yeah. I'm sure with CF two depending on where you live.
But Sure.
They seem to be do a better job of that, at least right now. There are some other conditions that are similar to Mobius and have the same, like, I would say, emotional impacts, but are slightly different. So if your eyes can go side to side but can't go up and down, that indicates a completely different condition.
Okay. Hey. Would you do something for me? Yeah. The social emotional impacts that you just just mentioned.
A pause, and a GLP aside29:00
Would you I don't I never do this, and I apologize. Wanna I go to I I have to pee. If I got up and went to the bathroom, would you think about that? And then I'm gonna come back and hit record again. You can answer that question?
Yeah. Absolutely.
I will not be long, and thank you. You're not being recorded while you're thinking. So if you wanna you're okay. I'll be right back.
Ladies and gentlemen, hold the phone. Scott's gotta go take care of his own. Two liters of water since quarter past three. So we're pausing the show because the man's gotta pee. He's gonna pee.
He's gonna pee. Sixty seconds, then he'll be back. Don't touch that dial. Don't lose the track. But while he's gone, let's talk about you.
Type one diabetes and you don't know the way. There's a place you can start and it isn't a guess. It's bold beginnings and it's free. No
Okay. Sorry. I'm back. You're being recorded again. I for people who are interested, two things.
Yes. I wash my hands. And the second thing was that I missed my GLP by a a day or two, and I almost immediately start gaining water weight when that happens to me. And then I took it last night, and now I'm I'm losing the water weight really quickly. I I when if I don't know if you've ever heard me talk about this or not.
Maybe you have no idea who I am. That would also be valid. But when I started using a GLP, they don't put you on a what they even consider to be a very like, a therapeutic dose in the beginning. And on the lowest dose, I lost, like, 14 pounds in the first week, and it was almost all water weight. It's incredibly uncommon, and it wasn't because I stopped eating.
So I think I think my body just doesn't work very well. And so, anyway but who am I talking to? I'm not trying to take not trying to take that torch from you, Kate. Don't worry. You're like, what do you literally, you're not the right person to get in a pissing match with about something like this to bring the whole thing full circle.
What the seventh cranial nerve does31:46
But sorry about that.
No. No worries.
Yeah. Yeah. So if you could if you could fill me in a little bit about what you meant by that, I'd appreciate it.
Yeah. So kind of look at the therapist hat on, you
know,
the condition in addition to the eye difference. The seventh cranial nerve is much more complex, and it has a lot more jobs in our body.
Mhmm.
And one of them is that it provides all the innervation in our face, so all of our facial movements. So the typical presentation of someone with moebius is that they have a lack complete lack of expression
Oh.
Which would have you know, has a lot of emotional impacts and a lot of societal impacts when we talk about relationships and jobs and, you know, mental health. It's just a lot there.
Yeah. How old is your child that has it?
She's almost six.
And are you noticing those things for her?
She is real we are all really lucky that her seventh cranial nerve is not completely missing. It's shorter than typical. So she has not as robust expressions, but she has full expression. And so there's no one that has ever really called out other than a medical professional about that, which I think, terms of the social emotional impacts, is huge.
She's she can pass, so to speak.
Yeah.
Yeah. Mhmm. And does she know what's happening?
She knows that her eyes are different. And, you know, we've and her speech was a much more difficult journey Mhmm. Than perhaps it it would have been. And she also has the low tone, so she falls all the time. But she does everything, you know, from what we were leaving the NICU worried about to now.
Like, we're in, like, a very different place.
And how many kids do you have?
Two.
Two. Was she the first?
She was.
And how old was she when you knew?
Three weeks. We were we were it was during COVID, and we were at one of the NICUs in Boston and had a $100,000 MRI.
Oh.
That was a fun bill. I just laughed because what else are you gonna do?
Was it extra good? I
I think so. They do cross sections. So it's like a three t MRI with cross sections of the brain because the cranial nerves are really tiny.
Did it have any value once you got the information back?
It did because it gave us a reason for why she was struggling to eat.
Well, that's good.
Yeah. So because of that lack of the reduced innervation, she has had a really hard time sucking on a bottle or a breast. So
Gotcha.
So we ended up with a an NG, so through the nose, feeding tube for the first six months.
And you still went the way of your mom, and you were like, we'll have more kids.
Yeah. But we did we did do genetic testing to see if it was, like, a a really strange other genetic thing that
could tell you that laugh you just gave me was very telling. You you you your laugh went like this. Yeah. I don't know what's wrong with us either, Scott, but thanks for asking. Yep.
Yeah. Well, that's that's really next child's okay?
Yeah. No. She's good. She was of course, you know, she can't I would have written a book about her too, right, just for fun, but she was born premature and had hip dysplasia. So that she's the character in the surgery book.
Okay. Okay. I was gonna ask how do you like, I assume there's a book for your for your child, but you can't write a book about Mobius. So what do you do? You pick some aspect of it and make it a broader topic?
So it definitely it was my first project, and so I broke a lot of the picture book rules. So I ended up doing a character for every aspect that can be seen in Mobius. Oh, I Pixar made a
movie about that. Yeah. Yeah.
With animals.
Nice idea.
So do you know which animal doesn't move their eyes?
Okay. Hold on a second. I see what we're doing here. It's like a test. There's an animal that doesn't move its eye sharks.
No. No. And I'm saying, like, moving them side to side. They turn their head instead.
Oh, it's an animal that turns its head instead of moving its eyes. I feel like this is gonna be, like, some flamingo? No. Alright. Tell me.
An owl.
Oh, who? Who? Uh-huh. Thank you.
Yes.
I can't believe I didn't think of that, but that's okay. So you make the owl the I got you. Go ahead. What else?
So Rose in the book is it's called the book's called Why Me Mama. So if you pull up, you can check it out. And Rose is the baby owl in the story. And the story is just about her getting ready for her birthday and worried that people that won't wanna come, the other woodland creatures, because she feels different.
Mhmm.
And mom takes her around delivering invitations, and Rose sees how everybody's different. Sometimes we see it, and sometimes we don't.
Yeah. That's lovely. Good
for you. And all the characters are real children around the world that I had connected with either in the Mobius community or through the Kickstarter.
Okay. Oh, you kickstarted the book?
I did. I raised $23,000.
Get out of here.
Yeah. I had no idea what I was doing either. So
Is Kickstarter still a thing? Is it still working? I know somebody made a board game with it.
Oh, cool. Yeah. It's still there.
Yeah. Do you use it still, now you have other ways?
I'm still working on the other ways. I now do kinda, like, smaller campaigns. My my goal for this one was 6,000, and it just, like, kept going.
I see.
But it got some, like, media attention too. But now I kinda it it doesn't raise that much money.
Yeah. Because because social media changes so quickly.
Yeah. The
Why sharing got harder37:56
things that work five seconds ago and I don't even mean, like, raising money. I I always I mean, my my best example would be when I was writing a blog before I was making a podcast. I could put something on Facebook, and tens of thousands of people would see it in twenty four hours. And now that doesn't work that way anymore. Just that simple.
Like, because Facebook wants to sell ads, they don't want
Oh, yeah. Yeah. Yeah.
Right? So but then the the shift that that puts on on the your ability to share things is it it's really immense. And then there's more and more people doing the same thing, and then you can't differentiate yourself. And it's it's it's interesting how they're gonna they'll say they changed it, but I think they're ruining something.
So There's also only so much time in the day.
Yes.
And taking care of my own health, my kids' health, taking you know, working, paying bills, also trying to wash watch some trash TV occasionally.
Like Yeah. How many
things do you really the books.
Yeah. Yeah.
Up a lot of time.
Yeah. No. I I appreciate that too. It is it is listen. I don't know what's right and what's wrong and or how things will shake out.
I I can just tell you from my perspective.
It's definitely different. Yeah.
Yeah. It has really changed, and it it will stop people from sharing good good information. You're just gonna I think what you're asking for is for everybody just to bend their leg and arch their back and bounce once, and then that's what apparently, that's what it's gonna be one day. Or people or people beating each up out in the parking lot of a seven Eleven or something like that. So, anyway, I think they say you get what you deserve.
I think we're gonna end up getting the social media that we deserve. Anyway, so you're in the
middle this I try to train my algorithm to show me kittens and puppies and, you know, nice nicely renovated vacation homes. But
That's the thing. My wife my wife has so many photos of homes and, like, rooms and things like that. I'm like, what's that for? She goes, that's just stuff I like. And I was like, what are gonna do with it?
She goes, I don't know. Probably nothing. I went, oh, okay. So at least that's at least that's a nice thing. You know what I mean?
Yeah. I don't wanna complain because I'm I'm having I'm in a bad mood this week about it, so I don't wanna start talking about it. It just is I don't know. It's fascinating to me. And it's gotta really impact trying to sell a a physical book to somebody.
Yeah. It it's also hard, I think, you know, the books that I create aren't all really created with, like, an Amazon audience because I'm limited in kind of getting the word out about them. Mhmm. And I if I'm able to do, like, a craft fair or things like that, I I have just an easier time kind of sharing out about stuff.
Do you know I wrote a book?
No.
No. I wrote a book in 2013, and selling a book is maybe the most difficult thing I've ever tried to do. It is just it is just not easy.
How did it go?
I mean, not not well. I I wasn't famous, so the publisher didn't put a lot of effort behind it.
Okay.
I did a I got a lot of media for myself. Actually, one of those media things is the reason the podcast exists now.
Okay.
Because Katie Kirk told me I was good at talking to people. It's her fault if you don't like the podcast. And but but along the way, I I got myself on NPR. I got myself, like, in my hometown newspaper on Father's Day, like, stuff like that. You know?
Like, like, difficult stuff, but nothing worked as well as I've I've told this before. I'll tell it to you very short because other people have heard it already. But after the Katie Couric interview, she made either I forget if it was AOL or Yahoo, but she used to have a, I don't know, presence on one of them or, you know, I I don't know, some sort of a business agreement with one of them. And the article about my me being on her show, it blew up. And the way it blew up is that people in the the the comments were arguing as to whether or not it was a closeted homosexual or not because men don't stay home with it.
Because I was a stay at home dad. That's what the book was about.
Oh, okay.
Yeah. So while they fought about that, I actually rose to number 50 on Amazon's list.
Oh, jeez. Yeah.
It just didn't last that long.
Yep. Yep.
And so it went away, and then I, you know, I took my they never asked me for my advance back, but the truth is I don't know if I cleared it or not, to be perfectly honest.
Well, I think I I have never done a traditional deal, but my understanding is that your advance, get to keep whether or not you get anything after that.
I I was told I had to sell it, so I don't know what ended up happening. But I know nobody ever asked me for any money back.
So Okay.
Yeah. I said that yeah, I bought a McDonald's with it and a and a tank of gas.
Yeah. So But it seems like it helped lead you to the next thing.
It did. Yeah. And it was a really great experience, actually. The entirety of it was a great experience. It just you I was never gonna be able to sell the book.
Mhmm. You you know what I mean? So it it leads me to ask you, like, what do you consider, like, success when you're when you make a book?
I think, partially, my goal financially is to break even. Yeah. That's my goal. So anything more than that would be lovely. I really wanna just be able to get them into the hands of as many people as possible that really need them.
And, ideally, I'd like to be able to give them away and have them sponsored by other people. And I think I'm I have not seen any anyone else crowdfund in the way that I have more people that pledge to my campaigns for me to give the things away
Mhmm.
Than that than for them to get them.
That's interesting.
And I I think that people can buy into like, they buy into what I'm doing, and they see the value, and that's really nice. But it's it's at at such a small scale Yeah. That it's hard to kind of like, I know there's so many more kids that would benefit.
What kind of a company could you see getting behind, like, buying the books so you can give them away?
Yeah. Well, I think for, like, the that my my body beeps, like, there's the visual representation in there of the CGM Mhmm. And the Omnipod. So, like, having some kind of a relationship with something like that would be amazing. I did one nonprofit in the Midwest is collaborating with me.
They ordered 500 copies, and they're including a copy with each family package that they send out
That's lovely.
Which is really, really lovely. And that, I think, is kind of the direction I wanna go in is to be able to do more of those kinds of partnerships.
Oh, that's awesome. Good for you. Yeah. And now do you kinda have the the footing about how to do it since you've done it once?
No. Because they re they they found me. To you. And so they reached out to me and was like, you know, we didn't even budget for this, but we love it, and we really wanna include it. You know, will you do do, like, a wholesale thing?
And I was like, yeah. Absolutely. And now I kinda need to figure out how to approach other organizations. And because they do like, other organizations do do that, that they send out, you know, the different boxes or, you know, a doll and a book or things like that. But
Getting the books into hands45:40
Well, I wish you luck. I hope somebody hears this and and reaches out to you. Where would they get ahold of you for that?
Think just email. I'm at acorncottagepress@gmail.com. Okay. And I I answer my my DMs on Instagram pretty well.
Very nice. I just had a person I interviewed say to me, did you answer my email with AI? And I went, I might've. I I I have a I get a lot of emails. And and I was like, I'm not embarrassed, but, like, I I said, sometimes I sit down.
I I answer, like, 400 emails. I'm like, I don't like, I can't I can't. You know what I mean? Like, I'm trying. But that's really the way I hope somebody does reach out for you.
Somewhere in the Midwest, like, can we shout them out, give them some credit for doing it?
Yeah. Let me I'm gonna share the correct information. I believe it's Kids With Courage. Yeah. The Kids With Courage Foundation.
Nice. And that was that I'm not asking you for a number, but was it an oppressive number or was something they were able to do without you're just trying to cover the cost of the books and get them there. Right?
Yeah. So they they paid a certain amount, which was much less than retail. Mhmm. And then they covered the shipping. Awesome.
Let's get to it then. Let's get some people out there.
Yeah. And it will what's also helpful is that whenever I can sell whatever I sell, I'm able to then put into the next project. Yeah. So being able to surpass, like, the actual cost of it means that, you know, with $10,000 for each project, like, it can kinda go into the next one, which is really helpful. And so when they were did that, I was able to put the down payment on the illustrator for the next book.
This must be how you got on the podcast because I must have known enough because I I have a fairly I wouldn't call it a rule, but I don't usually talk to authors because it leads to many more authors reaching out. I don't know another way to put this exactly. Yeah. And I and I get put in a I get put in a weird situation. A, the podcast isn't a book club.
And b, that when they wanna do it on Facebook like, we don't let people sell their own stuff on on the Facebook group. It just it leads to a mass of people trying to do that. And then it leads to like, the the the page just gets overwhelmed with people trying to sell things, and then it loses its value for, you know, what it's there for. And so we have pretty strict rules about, like, self promotion, and it makes me feel terrible. I I honestly wish there was just a way to do it, people trust me.
Everyone listening right now just had an idea. I appreciate all your ideas. It doesn't work. Okay? Whatever your idea was, we thought of it.
It doesn't work. So but I but to get you on the podcast, I I I guess I must have known enough about your story to say yes. I don't know my I I don't remember my own life, so it's hard for me to say.
Yeah. No worries.
But I love your story. So, obviously, I loved it in the past too. It it just really is you have a really fascinating path. And if I'm if I'm being honest, like, the you you have a perspective on, like, the fragility of life that a lot of people don't have too.
Yeah. I think that's one of the strengths, really. Like, when we talk about resilience, you know, like, that's just what life is. And so we're talking kind of earlier on in the interview about like, I grew up with CF, so it's just part of who I was. Mhmm.
And but the diabetes actually hit really hard because I was like, I already have something. Like, why am I getting why am I getting something else?
Hi. I got minority. Thank you. This is probably this is probably for someone else.
Yep. Yep. And the same thing with, like, when my daughter was born, I always thought, like, you know, it was a big decision to have children with this unpredictability of life. Right? And I was like like, her thing to deal with was supposed to be me.
It's having something really serious. It wasn't supposed to be her own her own thing.
I see what you're saying. You're like, I was gonna have a kid, and her problem was gonna be my problem. And Yes. Then she got my problem and her problem.
Yep.
Yep. That does seem unfair. Does that make you I don't know your holdings, but does that make you less or more religious minded?
I'm I'm not religious.
Yeah. Did it take I have
a I have a really hard time with with that.
Yeah. I was just wondering if it moved you in one direction or you've just left you where you are.
Yeah. My my I was raised Catholic, but I've never really been connected to it. I I think it it creates a lot of it's my mom is more religious, and I think it really helps her and helps create, like, a foundation of I don't know so much about community, but just, like, hope.
Yeah. And
that Didn't do the same for me. It didn't do that for me. So
Yeah. Maybe maybe the most insulting thing anyone's ever said to me was, god gave ardent diabetes because they knew you'd be good at it. And I was like, I don't feel like you're selling it the way you think you are. But yeah. Yeah.
But if you only get what you can handle Yeah. That like, I know I can handle a lot. Like, I'm tired.
I I could handle a nap and a sit in the sun. How's that how's that vacate?
Yeah. Like, you wanna send me on a cruise? I can handle that.
Yeah.
Hey. I can't No more.
I can't.
No more diagnosis.
I can't send you on one, but I can recommend juice cruise 2027. Perfect. Which is booking right now at juiceboxpodcast.com/juicecruise.
Good luck.
Selling books, and working a room51:11
Thank you. You hate this part of it, the selling for the book, or do you enjoy this do you enjoy talking about it?
I'm actually really good at it. And which I think I do a better job, like, face to face than I do otherwise. Mhmm. But, like, we go to a craft fair, and my husband, when I'm like, oh, I'm gonna just, like, meander around. He's like, you need to come back.
I'm like, I cannot talk about your books the way that you can talk about your books. And and I'm like, I I wanna shop too. Yeah.
You have to, though. I did a book fair once. I was just telling somebody about this this last weekend. Why is it why was I telling them? Oh, we were at we were friends for life.
I was at the Sugarpixel booth of friends for life. Customtype1.com/juicebox. And I was just throwing all my links. And and I was and I was working with John at with Sugarpixel, and he made these really great comic books. And I would and I was just sort of this is gonna sound really strange, but I was just the pretty girl that leans on the car at the Sugarpixel booth, which I know is incredibly strange.
But trust me in that setting, works out pretty well. I'm a good I'm a I'm a good draw at the booth. And so we had done a talk together, and then I was spending the next two days with him at his booth. And I would take the comic books and just I'd grab some, and I'd walk around. And you're not not really allowed to give things out outside of your space.
So I would just kinda walk the space, make eye contact with people, chat with them, tell them about the comic books, give it to them, go get another one, do it again and again. And I was giving away, like, a lot of comic books, which was the goal. But there were plenty of other that people were giving away that people weren't walking around with. And someone asked me, like, what do you like, how'd you, like, you know, how'd you figure out what to do here in this situation? I said, I went to a book fair one time in Collingswood, New Jersey.
It's a really, really huge popular book fair that happens, like an author fair once a once a year. And there were just countless hundreds of people there who had written books. And I wasn't there for five minutes when I realized if I stand behind this table, no one's no one's buying one of these books. And I just grabbed a handful of them. I got in front of the table, I started chatting with people.
And at lunchtime, I was out of books, and I left. And everyone else looked at me like they wanted to kill me.
Yeah.
And and what I I told the guy next to me because he's like, how did you do that? I said, you're gonna have to talk to these people. They don't they don't know they they're interested in your book. And there's too many of them here. You're they're overwhelmed.
They're just they're looking at covers. It's
I think also authors or people that are traditionally
Mhmm.
Like, drawn to writing and creating are a little bit tend to be more introverted.
Yes. Yeah.
And to me, like, I've never considered myself to be a great writer. Like, I I'm an I'm an advocate, you know, more so.
Yeah.
And so, like, the the the book is, like, the vehicle for helping. It's not like, that isn't the writing piece is not my passion.
But you know how to do it well and in a way that'll help people and support them, they'll enjoy that kind of thing.
Yeah. And to do it in a way, like, with other people that are experts in their own fields. You know? Like, I don't I think a lot of times when we think, like, self published, we don't we don't see the quality come through. And that's why I think it's really important, especially when you're focusing on topics that don't have a lot out there, to do it really well.
Mhmm.
And that cost it costs money
Yeah.
To do it really well, and it it takes experts. So, like, I do an I invest in professional editing Awesome. Many layers of it and professional book design and a professional illustrator, which I think makes a big difference.
Yeah. No. For sure. And that's that's really fantastic. Yeah.
No. I I had the same experience when I was doing some of those interviews that I set up for myself. I think it was after the NPR one that I did. The the publisher contacted me, they was like, that was really good. And I said, what was?
And they're like, your interview. And I was like, thank you. And I said, why are you surprised? And they said, oh, most authors are terrible. It's terrible.
And and a lot of people don't don't stand up. They don't talk to people.
Yeah. Not me. I'm like, I got all these books. I gotta get rid of them. Yeah.
Let's go. And also, what I write it for if I'm not gonna tell you about it? Like, it's that weird idea that they're gonna come find you that throws
you off.
You know? So, anyway, I think it's great that you're doing all this and that you're out there, you know, craft fairs and wherever else you can figure out to do it.
Yeah. No. And it's hard it's hard. Right? Because I also have two kids that are four and five right now.
So there's only so much space.
Yeah. No. I don't know how you're doing any of this, to be perfectly honest with you. Do you know? Are are you some days like
doing it? I think it's, like, every spare minute of, like, when they're asleep.
When they're asleep?
Pretty much. And they're not sleep enough. I wrote
a I wrote a blog post at 04:45AM today.
Just Perfect. Yeah. I wanted to share too that I am working on a sequel to My Body Beeps.
Okay.
And I don't have a Kickstarter or anything yet, but I probably will need one unless sponsor wants to reach out to me. But I am setting it at camp, going to diabetes camp. Mhmm. And that the idea about kind of how wonderful it can be to connect with others that also share some of your lived experience.
I happen to know that the ADA is keen on talking about diabetes camp right now. Oh. You should reach out to them.
Okay. Well, if there's anyone in particular that you think I should talk to, please let me know.
Maybe I would know a person. Hold on
second. I can send you a picture of the draft cover. It's really cute.
Stop. I would tell you this. A, definitely do that. Send it to me. And b, this whole thing is contingent on this person recontacting me the way they said they were going to after I just met them in person.
But I was approached if you're by the way, they said they listened. So, hey, ADA. I was approached by somebody over there who said that we wanted to talk about camp stuff. Why don't you contact me? There.
Okay?
Yeah. No. What I what I did with the donated books from the first campaign for My Buddy Beeps was I donated them to different camps so that they could kinda each have one, like, in the nurse's office at camp, things like that. And I asked if they would wanna if people would wanna do be, like, beta readers for the the second, which I'm not ready yet to, like, send that out, but I'm excited to partner with as many people as possible.
Yeah.
And one of my clients who has type one and is currently at camp right now is helping me with story, which has been a really nice therapeutic piece too, like, to use in therapy. But I'm really excited about it. And if you remember kind of from the beginning of our talk today, I wasn't able to go to camp because I wasn't able to
You're gonna get a germ or a cough.
Completely close to other people. And that is something that people don't with type one diabetes, that is not something you have to worry about. So I think it's just such a wonderful opportunity to connect with others and
Well, let me
share, you know, share your challenges and
Yeah.
Understanding and celebrate each other's strengths.
A camp book, and an idea58:27
Can I can I I'm gonna let you go in a second so you can go back to your life, but let me float my idea?
Yeah.
Why would not why wouldn't we be able to get multiple camps and then just change one page of the book to reflect the book being about their camp?
Yeah. We absolutely could. Or put, like, at the well, the only issue would be the print runs.
Yeah. But
then Like, it depends on how many people ordered. So
Then the the amount they would need to give to you would be for the run plus the act the different page in the print. Yeah. That's very doable, I would think.
I I one of my ideas is to have community participation to help design. Like, if it remains a fictional camp, to have kids with type one design, like, the T shirt and the logo
Mhmm.
And Mhmm. Kind of crowdsource some of the creative bits. But I think that could work kind of partnering with different camps as well.
I'm saying, like, why couldn't, like like, the Clara Barton camp do one? Like, why couldn't
Oh, yeah.
Like, Sweeney do it? Why couldn't ADA do it? Like, why couldn't a number of them do it? Then they'd all have the book if they like the book. Let let's say that.
And and then they could give them away at camp to the kids that are coming.
Yeah. Absolutely.
That makes a lot of sense to me.
Alright. That's what I did with my the first project. I partnered with the Mobius Syndrome Foundation, and they helped sponsor some of the costs. And then I sent them hundreds and hundreds of books, and now they they include that with their their packages to families too.
Okay. Alright. I fixed the whole problem. We just need somebody to reach out.
We just we just need some sponsors so that I can do what I wanna do, which is just give things away.
Yeah. No kidding. How how, I'll ask you this when we're done recording. Alright. You guys should reach out to Kate if you're interested in this.
Go look at her other books and decide what you think, and then reach out to her at what was that email address again?
Acorncottagepress@gmail or on insta@acornunderscorecottageunderscorepress.
Kate, thank you for doing this. I really appreciate it.
Of course.
It's awesome. Hold on one second. I wanna ask you another question. Okay. I'm gonna hit stop.
Heck of an episode today, wouldn't you say? Let's thank Dexcom and the Omnipod five for sponsoring. That's right, my friends. We were sponsored today by the Dexcom g seven. Dexcom.com/juicebox.
Head over there right now. Look into that fifteen day Dexcom g seven. Fifteen days a long time. It's like half a month. Don't check my math, but I'm pretty sure I'm right.
And let's also thank the Omnipod five. My goodness gracious. Omnipod five tubeless. That beautiful algorithm's updated now with that new 100 target. Get in there.
Find out more about it. Omnipod.com/juicebox. You want some tubeless insulin pumping? Yeah. You do.
By any chance, have you tried the small sip series? It's curated takeaways from the juice box podcast voted on by listeners as the most helpful insights for managing their diabetes. These bite sized pieces of wisdom cover essential topics like insulin timing, carb management, and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine. Take a deep dive, take a sip, and discover what our community finds most valuable on the journey to better diabetes management. For more information on small sips, go to juiceboxpodcast.com and then go oh, actually, we changed the website.
Let me see. Go to juiceboxpodcast.com. And from there, there's these two little lines on the right side top. That's the menu. Then click that, then click series, then there's pro there's small sips right there, pro tips top, all beginnings, bolus four, asks that.
There's a lot of them there. There's actually a little search there too. Could you just type small sips into the search? Oh, wow. That search works great.
Look at that. And then you could go right to, like, all results for small sips. Oh, and that takes you to the FAQ. You should check out the FAQ page too. I think that's juiceboxpodcast.com/jbfaq.
Seriously, that thing's amazing. Actually, the whole website is I mean, have you, like, seen it? You should you should go check out the website. The website rocks. It is a potpourri, a never ending cornucopia of support for you and your diabetes journey.
That's right. It really is. What else we got over here? Oh, I don't like the way that works. I'm gonna fix that.
Note to self. Change the change the masthead on the frequently asked questions page. Yeah. I don't like that. Fix that.
Oh, Claude. Oh, hell. I forgot to say thank you. Thank you so much for listening. I'll be back again very, very soon.
What is that noise? Stop it. Stop. Can you hear that? It's my chameleon squeaking.
Are you squeaking? What are you rubbing the branch against the don't tell people I have reptiles. They'll think I'm weird. Thanks so much for listening. I'll be back very soon with another episode of the juice box podcast.
Look at me. Get all deep in there with another episode of the juice box podcast. You can hear it. What was that? Oh, I'm getting alarms and alerts on my phone.
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